Tag: Cerebral Palsy Blog

Six Years of Searching Ends with One Simple Answer: Disability, Chronic Pain, and Horses

danielleshanti

Like many, many adults with cerebral palsy, I learned long ago that “not progressive” means that the damage to the brain does not progress, but cerebral palsy’s effects on the body most definitely DO worsen over time. Because we are told CP is not progressive, and because most healthcare professionals don’t know much about CP, we who are living with it are on a guideless journey of mostly unpleasant discovery. Thankfully, the internet has enabled us to connect with each other. We are each other’s only companions in the dark. Does anyone else…? What do you all do when…? How do you handle…? Of course, each person’s experience with cerebral palsy is different, just like with so many other conditions that are grouped under one gigantic umbrella, so we give each other plenty of contradictory, if well-meaning, advice. By the way, people with CP are taking charge and trying to get healthcare to meet our needs. Check out Cerebral Palsy Grows Up!

Since 2019, I have been on a journey of my own that has often left me feeling in the dark. It’s all been documented here, but I want to bring all the heretofore disparate pieces together now so we can see the big picture. Bear with me and my detailed self-involvement. I want this as a record for myself and might as well put it here, too. (I mean, it is my blog of my life with a disability. What do you expect?)

Here’s a not-so-quick rundown of all the moments I’ve deemed relevant to this particular exercise, timeline-style, kind of:

-Date unrecalled (many years): TMJ (jaw) pain and sharp ear pain.

-June 2008: Neck tension episode so extreme, it caused vomiting. Constant neck and shoulder tension, onset June 2016.

-August 2014: Onset of burning toes, especially when cold or wet. Assumed Raynaud’s. (Turns out it’s not.)

-June 2018: Diagnosed with celiac disease. With positive ANA and high centromere antibody. I’ve had my celiac panel blood test done seven times so far, including the original in 2018, when my tTG result read, “ >250.” Normal is <15. Since then, despite a very strict gluten-free lifestyle, subsequent results have fluctuated between 221 and 81.2. I am happy to say that the 81.2 was from August 2024. The only reason I’m going into this much detail about celiac numbers is that the literature states that when the numbers remain high, look for additional autoimmune diseases.

-May 2019: Ongoing sore throat (months). Faint positive for strep. Took antibiotics, but the pain remained, intermittently. This set off my search. The throat pain didn’t seem connected with anything else.

-October 2019: Ongoing throat pain, now constant. Negative strep; ENT referral.

-December 2019: ENT diagnosed laryngopharyngeal reflux (LPR). Prescribed Protonix for three months. April 2020 follow-up postponed because of the COVID-19 pandemic. Unremarkable esophagram (barium swallow test).

-December 2019: I started using trekking poles to walk longer distances, preparing to use ExoSyms.

-March 2020: Sudden onset of burning forearms, tender/sore thumbs and base of thumb. Loss of grip strength. Suspected cause is trekking poles. Not better with cessation of use. Moderately improved with PT (June–September), but not back to pre-pain function. (This coincided with the pandemic lockdown when everyone’s jobs and lives were upended. I now think that the stress of the sheer number of unprecedented events in 2020 was a big contributing factor.) 

-May 2020: H pylori negative. Checked this because of throat pain and reflux diagnosis.

-July 2020: ENT follow-up. Doctor said the inflammation was gone. But the pain was still there. Referred to gastroenterology.

-September 2020: Dramatic increase in throat pain. Chest pain/burning sometimes. Occasional honking cough. GI referral moved up. Avoided acid and caffeine, tried sleeping propped up, no alcohol, etc. Tried Pepto and Mylanta; didn’t help. (This coincided with beginning “distance learning” with my elementary school students. Have you ever tried to teach six six-year-olds how to read via Zoom? This again, I now think, was connected to the unprecedented stressfulness of the world, and the US, in 2020.)

–October 2020: My first upper endoscopy, which was an extremely stressful and emotional experience for me. Results stated “granular mucosa” and “reactive gastropathy with mild chronic inflammation.” No one seemed to think these were concerning or indicative of anything.

-January 2021: GI video visit follow-up. Sent back to ENT (sinuses?). 

-January 2021: ENT appointment with a different doctor. Scope showed minor inflammation. Flonase, Claritin, nasal rinse prescribed.

-February 2021: Tried Claritin and Flonase a couple weeks, didn’t seem to help. Same for nasal rinse.

-22 March 2021: Stomach pain and burning woke me up at 5am. Nausea. Throat/reflux felt very strong. Stomach pain eased some with food.

-Spring 2021–Dec 2021: I decided to try seeing a functional medicine doctor. He ordered loads of labs and diagnosed me with Chronic Inflammatory Response Syndrome due to mold exposure. Hard science re: CIRS lacking, but (inactive/prior water damage) mold was confirmed in our home. Mycotoxin urine test showed elevated levels of four mycotoxins, but the test doesn’t have the science to back it up.

-May 2021: Pop in groin. Had MRIs of lumbar and right hip. Diagnosed with labral tear, mixed type FAI, arthritis, probably trochanteric bursitis. Tried steroid injections. 

-April 2022: Sports medicine referral at UC Davis: gluteal tendonitis, lumbar facet arthropathy. Sent to PT. Referred for EMG. Tried gabapentin June-October 2022.

-March 2022: Significant increase in beverages/saliva, even food, going down the wrong pipe and causing coughing. Over the past six months? Often daily. Leaves chest hurting.

-April 2022: My PCP had originally suggested ENT or allergist for my throat pain, and we had started with the ENT. So now I asked for a referral to an allergist before deciding whether to tear apart our house to do mold remediation. I had been researching my symptoms, and on RareDiseases.org, I saw something that fit. I asked the allergist about granulomatosis with polyangiitis. He chuckled. (And was right that I didn’t have it).

-May 2022: Forearms still burning. My tTG was back to being very high. Since I also had positive ANA, I wondered if I had an additional autoimmune disease. My new PCP at UC Davis looked at my labs and history and agreed to refer me to rheumatology.

-June 2022: First visit with rheumatologist. No obvious signs of scleroderma, lupus, or other autoimmune diseases.

-June 2022: Leg EMG, nerve conduction study (ordered by sports medicine). Testing for neuropathy: findings “essentially normal.”

-July 2022: Referred to pain management by sports medicine.

-June–November 2022: Tried gabapentin, very low dose to start and worked my way up. First time consistently taking pain meds. Once I was on a standard dose, I stayed on it a while, but I didn’t notice any improvement in pain, and thought I might be starting to experience some side effects, like mild dizziness.

-July–August 2022: Spent two months away from home while brain retraining to see if there was a mold connection. No consistent change in throat pain, but interesting meditation experiences with The Gupta Program.

–July 2022–January 2023: Used The Gupta Program consistently, but no lasting changes.

-September 2022: Pain management doctor discussed compounding cream, CBDa, duloxetine, baclofen pump, and lumbar radiofrequency ablation (but nerves grow back). Referred me to pool therapy, but there are no facilities I can feasibly get to.

-September 2022: Arm EMG (ordered by PCP). “Normal study” with no evidence of peripheral neuropathy.

-September 2022: Right foot and ankle x-ray, at Sutter, for sharp pain that interfered with weight bearing and a new bulge on the side of my foot, onset July 2022. Referred to PT.

-October 2022: First visit with GI at UCD, for “uncontrolled celiac disease.”

-November 2022: MRI for right ankle, at Sutter. Osteoarthritis and not much else.

-January 2023: Tested for strep just in case, before helping a family member post-op. Faint positive again, just as in 2018, but again, no change with antibiotics.

-February 2023: First neurology visit. She was amazed and concerned by my abnormal reflexes and ordered some MRIs. Sigh. Ugh.

-March 2023: Dexa scan (ordered by GI). Low bone density.

-March 2023: Cervical spine MRI (ordered by neurologist). Various mild-to-moderate degenerative changes in places and disc bulges.

-April 4 2023: First appointment with PM&R, at UCD. Fun thing about a teaching hospital is that I had a group of people analyzing and discussing all my various symptoms, and it’s the closest I’ve felt to being in an episode of House, MD. Too bad there weren’t any helpful revelations. “If it hurts, don’t do it.”

-April 11 2023: Brain MRI (ordered by neurologist) because of “abnormal reflexes” in my hands and arms. Only findings: “Small white matter lesion in right brain” that is unlikely to have caused my symptoms.

-May 24 2023: Neuro follow-up. Doctor’s notes include: Small fiber neuropathy could possibly explain her forearm sensory deficit, although she could have mild cervical sensory radiculopathy given her symptoms improved with OT and MRI of C spine did report mild disc bulging at multiple levels. Since her symptom remained stable, symptomatic care for cervical radiculopathy or small fiber neuropathy is recommended, no matter if she does skin biopsy or not. “Symptomatic care” means topical ointment or lidocaine patches.

-June 2023: Endoscopy #2, UCD this time. Very little signs of damage from celiac disease.

-July 2023: I brought up the possibility of fibromyalgia with my UCD PCP. Started Savella in September. Didn’t help. I guess it’s not fibromyalgia.

-September 2023: I was casted at my local Hanger Clinic for a left AFO (recasted and padded in February 2024). Already had one on the right side.

-October 2023: I fractured my right shoulder in a kitchen fall. First panic attack.

-March 2024: I purchased a posterior walker. Started trying it around the neighborhood. Much less labor intensive than using trekking poles, but I’m still not comfortable using it in public (it’s bulky and rattles loudly).

-April 2024: First visit to a new podiatrist. He HELPED my excruciating left big toe!

-May 2024: Appointment with a new neurologist (referred by rheumatologist?) Re: throat and arms. “You have CP.” Referred to otolaryngology and PM&R.

-May 2024: First Teledoc appointment with psychiatrist, because I’m finally open to medication for anxiety. Tried Lexapro. Didn’t seem to help. Tried Prozac next for a few months. Helped but too many side effects.

-June 2024: First Teledoc meeting with counselor. Weird and unhelpful. Had three appointments with her before trying another, who was also weird and unhelpful. Stalled on my quest to find a good therapist.

-October 2024: First visit to UCD otolaryngology for an esophagram and scope. After the scope, he said I have mild laryngeal dystonia/dysphonia. Referred to voice therapy.

-November 2024: PM&R visit #2, with new doctor. No gaggle of students this time. Just a long, detailed one-on-one session, with a few standard strength/tone assessments. Started oral baclofen. Referred to acupuncture.

-December 2024: PM&R follow-up. Increased baclofen. Referred to urology for lifelong, basically, frequency and urgency.

-13 December 2024: First appointment with voice therapist (SLP). He said it doesn’t seem like laryngeal dystonia, but rather just spasticity/increased tone. 

There’s a saying in medical school. Well, I’ve never been to medical school, but I heard this way before it was on Grey’s Anatomy, so it must be an established maxim: “When you hear hoofbeats, think horses, not zebras.” In case it isn’t obvious, this saying means that symptoms are most likely caused by a common condition, not an obscure one. You’ve got your overzealous interns coming up with rare diseases, and statistically, it’s more likely to be something that isn’t rare. Horses, not zebras.

Of course, we all secretly think we must be the one zebra in a herd of horses. Just because something is rare doesn’t mean it’s never that thing. It just means that it’s rarely that thing. Someone has to be a zebra sometime. Maybe it’s me. Having access to the internet only encourages our zebra suspicions.

According to my imperfect memory, I grew up without a primary care provider, only seeing physical therapists and an orthopedic surgeon. I never got “sick,” so I didn’t need a doctor. Okay, it’s true that my dad was a GP, so I had a live-in doctor. And he did give me stitches both times I needed them. But my point is, I was, generally, a very “healthy” kid. 

I didn’t even know how one went about getting their own primary care doctor, and it felt like a very big step for me in my twenties when I finally did it. I had my own doctor who wasn’t related to me. I had my first pelvic exam. (We in the CP community discuss this adventure regularly. Stirrups are not required!)

I was a kid who almost never needed a doctor, and now I am someone who not only has a primary care doctor and gynecologist but who, in the past six years, has also seen ENT/otolaryngology, an allergist, gastroenterology, rheumatology, sports medicine, pain management, integrative medicine, functional medicine, internal medicine, physical medicine & rehabilitation, podiatry, and neurology. There’s an undeniable element of absurdity in this list. I fully acknowledge that.

I decided to look outside family medicine and seek integrative medicine in my thirties because I was experiencing more and more chronic pain, fatigue, and general decline, and I hoped something more, well, integrative, would help. It was the integrative medicine doctor who tested me, to my surprise, for celiac disease in 2018. If I hadn’t gone to her, I think I would still be undiagnosed. I did not go to her for gastrointestinal issues, but her office took the most thorough history I have ever experienced. Because I do have celiac disease–with panel numbers that have always been out of range, no less–I have a legitimate reason to have a gastroenterologist. Because I have two markers indicating the potential development of other autoimmune disorders (again discovered by integrative medicine), I also see a rheumatologist twice a year (Although these markers were discovered in 2018, I didn’t see a rheumatologist until 2022). It’s still a little weird to me that I have these two specialists that I see regularly now, after being so outwardly healthy my whole life.

The constant throat pain that appeared in 2019 kicked off the ENT/GI journey, and the addition of the burning forearms in 2020 eventually added rheumatology and neurology to my “care team.” Various CP-related issues and injuries led me to sports medicine, pain management, podiatry, and PM&R. Sprinkled throughout were numerous procedures and MRIs that were all the more fraught for being rather inconclusive, except showing that I am, like everyone–but more and earlier–experiencing lots of “degenerative changes.”

It was June of 2022 that I switched over from Sutter Health to UC Davis. When I had chosen my first long-term primary care provider in 2012, I called up Sutter because that was the hospital in town, and I knew how to get there on the bus. I liked my doctor, and after a decade with her, it felt weird to decide to see someone else. Furthermore, because of my childhood associations, I thought of UC Davis as the place you go when you are having surgery, not the place you go for regular healthcare. But I was feeling frustrated and positively worn out, and I wanted to see if I could find answers elsewhere. I didn’t like the idea that one medical establishment could really be better than another, but I decided to find out.

Overall, my experiences at UC Davis really have been more positive than my interactions with doctors at Sutter. The doctors I’ve seen at UC Davis have been more willing to admit when they don’t know something, and therefore also seem more open and friendly, and to genuinely care, for the most part.

I saw a second neurologist in May this year after asking my primary care doctor about vagus nerve stimulation. I have continued trying to find relief for my throat pain–it’s the one thing that still feels unbearable indefinitely. I have tried lots of “acceptance and surrender” with The Gupta Program (which brings together pieces of many different systems, including Buddhism). I do agree with the Gupta Program that “what you resist, persists” (borrowed from Carl Jung). There are plenty of pain studies about meditation and mindfulness. The less you focus on pain, the better you’ll feel. And of course it isn’t easy. There are minutes and hours I don’t think about my throat, and other minutes and hours when I notice my attention on the sensation continually. 

After trying Gupta, I kept searching for answers and relief, and I’ve learned a little bit about the vagus nerve. The vagus nerve goes down both sides of the neck, and affects almost every system in the body. There is such a thing as vagus nerve dysfunction, and vagus nerve stimulation (VNS). I thought that maybe I could do 72-hour heart rate monitoring to check my heart rate variability (HRV) and the health of my vagus nerve activity, as suggested by the doctor in this video on the vagus nerve. 

However, when you go to a neurologist and ask about vagus nerve stimulation, they are thinking of it in the context of a surgically implant, for treatment of such varied conditions as seizures, depression, and stroke. I was not under any impression that I needed a device implanted in my body. There are many ways of stimulating the vagus nerve that are non-invasive. I just wanted to talk to someone who was knowledgeable about the vagus nerve system as a whole, and how it may or may not be affecting different parts of me.

I have been planning to write about this appointment since it happened in May. By planning, I mean avoiding. So much so, that I had several other appointments that followed it, and I thought, well, I’ll just wait until after this next one and then write about all of it. And here we are on December 31st, and I do not want this task to follow me into the new year (I’ve been writing off and on for weeks). This appointment was hard for me. It was hard because after we talked about my chronic pain and fatigue and increased muscle tone and decrease in function, and also my forearms and my throat, the doctor concluded, “You have CP.” As if this fact explains everything. I sat in the chair and I stuttered, “But, my diagnosis is mild spastic diplegia…” The notes from the appointment state that the doctor suspects “spastic laryngeal muscles.” He referred me to otolaryngology and also back to physical medicine & rehabilitation. 

I’ve held on to those words, “mild spastic diplegia,” for my whole life. I heard them as a child while doctors and physical therapists spoke over my head after testing my reflexes and my dorsiflexion and watching me walk up and back, up and back. I’ve read them in my medical records. They are the words I use to explain myself to people and to introduce myself to new doctors. Mild spastic diplegia, affecting my legs. 

Over the years I had come to accept that because my spastic diplegia influences my gait and my posture, it will therefore affect my back and shoulders and neck and jaw. However much I didn’t want my CP to affect my upper body, it does. Everything is connected. I was even adjusting to the pain and tension in my forearms being a CP thing. But my throat, too? My throat? No, no, no thank you. If my neverending throat pain is a CP thing, that means I am likely stuck with feeling like I have strep throat for the rest of my life. There, I have written it down now. It only took me about seven months.

Also in May, I had my first appointment with a mental health professional (made months before, not as a result of the neuro visit). I have been wanting to go to therapy for years. I finally decided I was ready to try medication for anxiety, and the psychiatrist I had my virtual appointment with readily diagnosed me with generalized anxiety disorder and prescribed medication. That journey will be a separate post, if I ever get around to it. But it’s been interesting, and has influenced this journey as well. Did you know anxiety meds can cause increased muscle tension? Me either, until I read the long list of possible side effects and then experienced it for myself.

In October, I went to my first otolaryngology appointment. The lovely “barium barista” who guided me through my swallow study told me the doctor I would be seeing was highly regarded. Patients from all over the country came to him when other doctors were at a loss. I talked with the doctor and he put a scope up my nose and down my throat. Then he had me say sentences like, “Please pass the peas and potatoes to papa,” and the other one that is more voiced that I forget, about rain. (That one was harder for me to say.)

He said that it looks like I have mild laryngeal dystonia. Not at the level where he would inject botox into my vocal chords (that’s what he does). I have a diagnosis! Laryngeal dystonia! It is not mold, I am not sick. I just have tight muscles. What was devastating in May almost felt like a relief in October. I think this had a lot to do with the Prozac I was trying at the time, actually. Cue some research as I learned a new word to fold into my identity:

Dr. Judy Gooch

Is it Spasticity, Dystonia or Rigidity

Spasticity and Dystonia: What does it look like?

In November, I saw a new doctor at physical medicine & rehabilitation. She thought trying oral baclofen was a fine idea. Just to recap, the pain management doctor I saw in 2022 was ready to surgically place a baclofen pump, but when I asked about oral baclofen he only said it wasn’t as effective. Two years later, I’m trying oral baclofen. It’s…doing something? On her referral to voice therapy and acupuncture, I saw that she had written laryngeal dysphonia, not dystonia. Cue more research:

Laryngeal Dysphonia from Dystonia Europe

In a talk through Dysphonia International, Dr. H. A. Jinnah said there are terms often used interchangeably: spasmodic dysphonia and laryngeal dystonia: “Laryngeal dystonia is a group of disorders and spasmodic dysphonia is one of them.” The treatment is often botox injections into the vocal cords, but the doctor I saw said mine was too mild for that. While, after seven months of sitting with it, I can wrap my mind around my “mild spastic diplegia” cerebral palsy affecting darn near every muscle group in my body at this point, I still struggle with the expression of spasticity in my throat equaling a constant, strep-throat-like pain. The various manifestations of pain in the rest of my body do not feel like this. And there is something about it being in my throat, my voice, that is less ignorable than in my extremities. My voice feels like me, and for it to hurt all the time, for me to find, not pleasure in singing along with musicals, but pain, has been really hard.  

This month I went to my first voice therapy appointment with a speech and language pathologist. He doesn’t have experience with CP, but based on my history of trying all the things and nothing having a lasting effect, he doesn’t think there’s anything he can do. Voice therapy isn’t what I need. It takes muscular strength and breath work to produce sound. He gave the example of a gramophone. The box at the bottom is the muscles, diaphragm, etc. in the torso, and the horn is the muscles in the throat. The vocal cords are just the itty-bitty needle. He’s willing to try massage and muscle taping and teach me (& spouse) to do it ourselves. There are lots of tight muscles in my throat. The pain signal comes from nerves, and there are lots of nerve endings in the throat as well. The baclofen hasn’t decreased my muscle tone enough to reduce the pain of the tension anywhere in my body. I’m back to thinking of round two of The Gupta Program to work on calming my nervous system and its hypersensitivity and constant loop of pain signals.

This year, I also watched the documentary Joan Baez: I am a Noise. I may be completely misremembering this, but I think in an interview segment she watched a clip of herself singing in her early days, and then she was asked straight out if she could still sing like that. She answered, No, I can’t sing like that anymore, and yes, I miss it. Of course, Joan is 83, not 43. I think she didn’t sing publicly for quite a while. Instead, she stayed connected to music by finding joy in dancing. And she painted, because some people get to live lives full of remarkable ability and talent like that. More recently, she has given concerts again. She seems to have reached a truce/peace/acceptance of her voice and her abilities as they are now. It is natural for us to look back and to marvel and wonder at the way things used to be, at what we used to do. For all of us. I can hardly believe I used to walk more than a mile unaided and work for hours straight and then walk some more. (In my twenties. In my thirties I vividly remember the feeling of my pelvis being full of cement and wanting to lie down on the bike path on my way home.) 

I think coming to terms with a decline in ability is perhaps easier when you’ve already come to terms with never having had full able-bodiedness in the first place. For me, it’s the pain that’s hardest. And that no matter what, it’s always there. It’s the lack of respite that is exhausting at best and overwhelming at worst. And that is why I’ve spent the last six years searching for an answer to my throat pain. In the hope that one of these things is not like the other. (Throat pain is not like all the other body pain.)

After six years of searching, I finally know that one of these things is like the other. My spastic diplegia isn’t only diplegia. I have to accept that a major part of my identity is no longer what it was. I am not who I was. We continue to be new versions of ourselves, and often we miss parts of the old ones.

I am a horse, not a zebra. I do not have some rare condition with an easy cure. I have cerebral palsy, a very common lifelong disability that affects my muscle tone. Even in my throat. 

Now that I sit here on the final day of 2024, after procrastinating and processing for the last seven months, I’m relieved to have finally written it all out. Thank you for reading, if indeed you made it this far!

May we all find moments of peace and happiness in the year to come.

Cerebral Palsy Awareness Month 2024: Free Fitness for Those with Limited Mobility

danielleshanti

This post has been brewing for months, so here it is, finally. It’s already March, 2024, and it’s Cerebral Palsy Awareness Month, so let’s pretend my timing was completely intentional.

In August and September last year, I was settling in to our new house and discovering new free (or low-cost) resources. I was doing my best to both stay active and keep my nervous system calm, even with the heat and chronic pain and fatigue and life. I’d found a few tools I was really grateful for and I wanted to share them. Then I fractured my shoulder and I stopped doing those new things. I’m not back to them all yet, but they are still good. Good for all brains and bodies, and available to anyone with internet access.

First, I looked up free meditation apps and tried some. Since my one-year membership to The Gupta Program ended, I missed all those meditation choices. YouTube has changed things, and my favorite meditations I saved there are now interrupted by ads. The free app I like best is the Insight Timer. There are loads of different guided meditations, and you can filter by topic or length or male or female voice. I always choose body scans or a yoga nidra.

The second amazing resource I found is the AARP. No kidding. I saw a FB advertisement for a free virtual exercise class, and I looked it up. Did you know you don’t have to be over fifty or a member to participate in AARP classes? They have loads and loads! And not just exercise classes, but cooking, and educational ones, and music and film ones. It’s called the AARP Virtual Community Center and it’s awesome! So often I am overwhelmed by everything that is awful in the world, and then I find something like this, and I think, sometimes, we do things right. Sometimes, we are amazing. Use the filter to find the ones you’re interested in. I’ve done chair fitness and qi gong, and I even tried laughter yoga. That was super….weird and fascinating. I can’t use my shoulder as an excuse anymore–though five months later it’s still not back to pre-fracture function–and I’ve got to get back into trying new things!

The third thing I discovered is not free. But it’s nearly free, so I’m including it. Over the years, physical therapists and doctors have suggested water therapy. There isn’t anything in my town, and the place in the next town over doesn’t take my insurance. So, I didn’t think it’s something I’d ever be able to try. Then I looked at my city recreation page. Again. There are a couple public pools attached to parks here, and there are classes like water aerobics. But I lived on the west side of town, and the pool with the aerobics was on the east side. Now I live on the east side, so I looked it up again. I saw on the “Aquatics” calendar that there was a water aerobics class twice a week. The cost per session? Four dollars. The location? A twenty-minute walk. So even though I positively deeply dislike taking off my clothes and putting on a bathing suit and putting on my shoes and walking to a pool and switching my shoes for water shoes (or else my toes will get torn up on the bottom of the pool), climbing into a pool and climbing out of a pool and being in a wet bathing suit and switching my shoes again but with wet feet, and walking home and taking off my shoes and taking off a wet bathing suit and putting on clothes, and then rinsing out my suit and hanging it up, I had to give it a try. And don’t get me started on having to pee. I pee before I leave the house. I pee when I get there. (I hate using a public restroom in a bathing suit.) Can I make it home before I pee again, or do I have to use a public restroom in a wet bathing suit? It was positively exhausting. But the 45 minutes that I was in the water? That was good. The participants are 98% senior citizens and they all chat and know each other and are friendly, and the instructor is enthusiastic and encouraging. 

For August and September on Tuesdays and Thursdays, I was someone who did water aerobics. “Hydrotherapy” for $8 a week. And it’s year-round! In a “heated” outside pool. I didn’t know if I was still going to make myself go at 8:30am when it got cold, but it was still hot on October 3rd as I lay on the kitchen floor with a fractured shoulder. I thought, well, maybe I can still go if I’m careful. And then I realized, no, that’s not going to happen. And I haven’t been back since. Sometimes I think, my shoulder is good enough for pool therapy now, and it would probably benefit from aerobics. But I just don’t wanna face the whole process again, but colder. Someday, not now. 

My point is though, that your town or city might also have super cheap classes that you don’t know about! Go on the official website and find recreation. My town also has an adaptive recreation program, and a really active senior center. I’ve never tried to take classes there, and they are a little pricier than water aerobics, but I’m pretty sure they’d let me in even though I’m not a senior yet. I also know that people who participate in community classes are generally awesome and would likely be happy to carpool if transit options are limited.

Because I didn’t want to leave you with only two free resources and one not-free, local one, I looked up a few more. Here they are, all together:

Insight Timer app

AARP Virtual Community Center . Filter by Category rather than Date and select “Exercise & Wellness.”

Adaptive Wellness through Disability Partnerships has a calendar of classes!

The Cerebral Palsy Research Network’s MENTOR Program is free.

The National Center on Health, Physical Activity, and Disability (NCHPAD) has a free fitness program that you can register for as well. They also have some interesting videos on things like fall prevention, and a directory of programs by state and country. I find the website confusing, but there’s lots there, so poke around!

Here’s my own playlist of inclusive workouts that I like on YouTube. I’m sure there are lots more. Use search terms like “chair fitness” or “seated workouts.”

Finally, I have updated my About Danielle page and my CP and Chronic Pain pages to reflect recent events. (The government finally agrees with me that I’m disabled! Again/still. Yay!)
Happy Women’s History Month and Cerebral Palsy Awareness Month to all the women with CP out there! If you want to read books that feature cerebral palsy, check out–and add to–my cerebral palsy book list on goodreads!

The Gift of Space

danielleshanti

I’ve always loved the idea of tiny houses. I love the way everything fits together like a puzzle, the thoughtfulness that goes into functionality and design. I love that tiny houses are the antithesis of the “more and bigger” mentality that pervades our culture, that smaller living spaces save money and energy and preserve habitat.

Ten years ago, I moved into my future husband’s 673 square foot home. Though not a tiny home, it’s a small one by US standards. This home has three rooms: a vaulted-ceiling living room/kitchen, a sizable bathroom/laundry room, and an adequate bedroom with a pretty big closet. I love the neighborhood and the transit options, and while it took some finegaling to make room for me and my stuff, we eventually made it feel comfortable and functional-ish there. When I had an editing job, I worked at the kitchen table, and when I tutored, I was able to use the community room nearby.

Then the pandemic happened, and we both needed to work from home. My husband worked in the living room, and we squeezed a tiny desk into the bedroom between the foot of the bed and the dresser for me. My part-time job at the elementary school went remote, and I know Bradley could hear every word of my phonics lessons as I attempted to teach reading over Zoom.

We needed office space. Bradley’s job stayed remote two days a week even after sheltering-in-place lifted, and the kitchen table was not a good long-term solution. We started to think about moving more seriously. I didn’t want a big place. “Just one more room,” I kept saying. Just an additional office/guest room. I certainly had no desire to clean more than one bathroom.

But when three-bedroom places came up on Zillow, my ideas started to evolve. What if I had an office too? What if I had a dedicated room where I could edit and tutor rather than making it work at the kitchen table? What if that room had a permanent space for physical therapy, so I wasn’t always trying to use the bed or floor? Beds are not an ideal surface, and the floor is hard to get down to and up from, and, let’s face it, usually needs vacuuming. It doesn’t take much of a deterrent to stop me from doing something I don’t actually want to do, and I was far from consistent with my PT.

A three-bedroom place for two people? Was it ridiculous, wasteful, upsizing so much? I struggled to justify the increased load on the planet, but still dreamed. Bradley could have a room that was just his, for work and hobbies, without having to shove everything into a closet when guests came. I could have a multi-purpose room to meet all my needs, which could also be a guest room when needed. Our bedroom would be just for sleeping. It sounded positively magical.

On July first this year, my husband and I moved from a 673 square foot home to a 1023 square foot one. Though it is far from our dream home, our 1969 three-bedroom two-bath house feels so big. There’s even an attached two-car garage. What a luxury. In order to have both a PT table (a queen platform bed with a mattress topper and foam gym tiles atop it), and a tutoring table, I get to have the primary bedroom as my office, and it feels completely extravagant and special. There was already a built-in desk, so I don’t even have to clear away my computer and piles of papers when it’s time to tutor.

There’s been a lot to adapt to in this house. The two bathrooms are both small and a bit awkward to maneuver in. Maneuverability is important when you need to pee. Grab bars went into the shower stall in one and around the bathtub in the other. We had remodeled our previous bathroom to take out the bathtub and have a barrier-free shower, but I must admit that I enjoy taking a bath and that it feels a lot safer to wash my hair sitting down than standing in the shower stall. (I’ve never liked the idea of a shower chair, and even if I did use one, the shower is so small here that there’s barely room, and nowhere to put it when someone else showers.)

There are steps to get into the house and steps down into the garage, which is where the laundry is. Laundry has always been a very laborious task for me and now I have fancy front loaders that came with the house. My legs find it excruciating to bend and crouch when removing laundry from the machines and this is something I hope will get better with time. My husband added a handrail to the garage stairs right away, and we managed to fit a storage bench in front of the laundry machines, so that I can kinda sit while crouching and reaching, though room for the washer’s open door means the bench is far away from it.

Perhaps one of the hardest things to adjust to after moving to this side of town is the lack of transit options. At our old place, a bus stop with four bus lines was steps from our house. Here, while the bus stop is close, there is only one line that serves this neighborhood. And there’s nowhere to sit while waiting. Transit riders know that taking buses is generally much slower than driving, at least in smaller towns, so we factor lots of travel time (and wait time) into our daily lives. But this particular bus line is not designed to connect to many others, so I either just miss the next bus I need, or wait 20-30 minutes for it. Or I take one bus and walk 30 minutes, which is exhausting. I recently had a twenty-minute appointment that ended up taking me four total hours to get to and from by myself. If you’re wondering why I don’t drive, you can read the About Danielle page. I also don’t want to spend money on a rideshare service when transit is free for people with disabilities, and I believe in it and want it to be better. (I wrote a letter after that four-hour debacle.)

The goal of this post is not to complain about all the new and inaccessible things I have to adjust to after moving. Rather, it’s to recognize that we are still the same people that we were before we moved. Obvious? Maybe. People (especially this person) tend to dream and then fixate on their fabricated logic: If we had more room, we’d actually have a place to put XYZ. If I had an office, maybe I’d write more/be more productive. If I didn’t have to get down on a dirty rug, I’d stretch more. When we move to a quieter neighborhood (living next to a busy bus stop has its cons), I’ll sleep better and have more energy. Et cetera.

It didn’t take me long to realize that, yes, more space is truly a wonderful gift that I’m so grateful for, and despite that gift, we are still fundamentally the same. I did not transform into some elevated version of myself. We still leave our mail in a neglected pile, still have ever-evolving drifts of crap on our tiny dining room table. (Our additional 350 square feet does not mean there’s a better dining area.) There are still phone calls to avoid making, and odds and ends to avoid unpacking. There are still endless dishes and endless laundry that we don’t stay on top of. Why do humans need to eat so often? And wear so many clothes? 

Existing and functioning still feels really hard, even with more space.

There’s so much that I love and don’t love about our new house, just as there was so much I loved and didn’t love about our old house. That’s how life goes, if you’re lucky.

And so I continue to tutor, at my dedicated tutoring table. I continue to provide my perspective as a sensitivity reader, at my built-in desk. I continue to do PT and meditate on my “therapy table.” I continue to be grateful that my living room is now separate from my kitchen. I continue to marvel at how much safer I feel emptying the dishwasher in a narrower kitchen. I am here, still me, in a new environment, making it through the days, living in an ever-constant stew of fatigue and gratitude.

Life with ExoSyms: Take Two

danielleshanti

8 February–24 March, 2021

I’ve mentally composed bits and pieces of a blog entry so many times that it seems as though I must have already written it. But I haven’t, so here we are, as I finally buckle down to write during my second spring break of the pandemic.

When I first got my ExoSyms, I was told it would take one to two years before I was using them to their full potential. I liked the idea of marking time, tracking that progression, until I could say, “It’s been two years and look at me now!” But I’m nine months in, and I don’t feel like marking time anymore. I’m no longer going to put the number of days in the titles of my posts. Progress is not linear, and there’s no endpoint. I keep thinking, What if they’re not for me? What if I just don’t progress beyond walking on a flat surface with poles? Maybe my body truly cannot use them to their full potential and it’s a case of too much, too late. 

I’m part of a Facebook group for women with cerebral palsy. Recently, someone wrote about how she used to walk independently and now she needs a walker. She fights the feeling that she just needs to “try harder,” that she shouldn’t take twice as long to clean the house and use twice as much energy doing it as she used to. Others chimed in, feeling the same. The decline is real. And it’s making itself known to me in very real ways. If ExoSyms had been available to me when I was twenty or twenty-five, before all the chronic pain and decline really took hold, maybe I could have really used them then, and extended my peak quality of life. But now? I just don’t know if I can do it.

The pandemic certainly hasn’t helped. It’s had a physical and mental effect on all of us. Maybe there’s a small group who were really able to use the time at home to cook well and do yoga and take up running. For the majority of us, our physical activity has plummeted and our time in front of screens has skyrocketed. Of course it’s not good. I’m not sure that I can ever achieve my pre-pandemic level of activity again. In 2019, when I first started using trekking poles, I was delighted with how they helped me, what a great option they were for longer distances. Now? Now I need them. I have gone from walking independently to using a mobility aid, just like so many others with cerebral palsy.

With PT, I had left off with my therapist at a loss and ready to let me go for six months. Instead, I decided to keep going. When I returned mid-February after a month away, not having pursued more x-rays or the facet block shot as he suggested, I said that I think consistent therapy is a worthwhile thing. My cerebral palsy is not going anywhere, and I can get stretched with a therapist in a way that I simply cannot replicate at home. That session was the first time this therapist had ever really explored my increased tone and decreased range of motion, I think. (He has taken over from C, who is recovering from surgery, and we had been focusing on core and glute strength and lumbar issues.) So this was for him an introduction to how my body works. He realized that, yes, actually, I can benefit from passive stretching. There was a “wow” moment, as in “whoooa, that’s tight.” Yes, I thought, now you understand.

He did stretches that I can’t do alone and encouraged me to try them with assistance from my husband. So, I’m back to going every two weeks. We’ve even done a couple ultrasound sessions on my right piriformis, which is more often painful than not.

Also in February, I finally made myself get in touch with Ryan at the Hanger Clinic and let him know what’s been going on with my back, and that I hadn’t walked in my ExoSyms for more than three months.

“So you’re really starting over then. That’s okay,” he said. It’s not entirely true, as I’ve tried hard to keep up with strengthening my glutes and core, and I hope I’ll have at least maintained what strength I had in the fall. Ryan suggested some back support and told me to practice walking fifty feet five times at a stretch and then take the Exos off. (Rather than trying to wear them for hours at a time, navigating around furniture, etc.) He sent me four brace options. I sent those on to my physical therapist, and ordered the winner.

My new brace arrived on March 8th. This is the second time that I’ve made an assumption about physical aids and been proven wrong. The first was about the poles, and how I thought they wouldn’t help and just be a tripping hazard. With this brace, I had wondered before if back support would help, so I was open to trying it right away. I still figured it was likely that it would just be uncomfortable and not do much.

I have to lie on the floor, bend my knees, and make sure my back is flat before I strap myself into it. The first time I did it, and got myself back to a standing position, I said, “Whoa.”

This thing holds me up. It holds me in. It’s there, supporting me. Hugging me so firmly. It doesn’t let me take steps the way I usually do. It’s amazing to realize how much my lack of trunk control must be affecting my gait, my alignment, my whole body. Because I don’t really feel like I do lack core stability. It’s another “Oh” moment. How can I know what stability feels like if I’ve never felt it? This little bit of stability afforded to me is like a glimpse into another world.

 The worry, of course, is that my core will become weaker as I rely on the brace. I don’t think this will happen. It’s more like it’s giving me a continuous awareness of my core. Like when a therapist or instructor touches your abdomen and says, “Tighten here.” It’s easier to do it when you know where to focus, or when you have something to tighten against. The brace feels similar to the super-tight belt and pole combination, used during Hanger training week to teach me how to “squish” with each step. I think for me the belt did more than the pole. As soon as Jared took it off, I didn’t feel my core as well, couldn’t tell whether I was really squishing. 

I may be feeling a further benefit as well. It’s a little like having my own personal weighted blanket on me at all times. I’ve never tried a weighted vest, used with kids on the autism spectrum, but I’m guessing this is similar. It’s the firm hug that calms the nervous system. It’s Temple Grandin’s squeeze machine. I’m not saying I’m completely calm now, but I can say that I like wearing this. If you have anxiety, it’s an inexpensive option to experiment with. Yes, it can be uncomfortable. Yes, it tends to ride up and need readjusting throughout the day. Yes, it makes wearing clothes interesting. And yes, it’s going to be way too hot in another week or two. But–I like it.

I’m tired of letting the pandemic get the best of me, and with the stability for my back that I needed, I’m trying, once again, to increase my physical activity. I returned to three seated workouts I like on YouTube. I find these extremely challenging once they get going, and have started again with only fifteen minutes. The only time I’ve made it through an entire workout (several years ago), it took me and my husband months to work up to it! All three of these workouts are truly gems. Along with some schnazzy workout gear, they all feature people of different sizes and races and abilities. Two of the workouts have real, live people with cerebral palsy. It’s truly an awesome sight to behold. As I feared, however, these arm workouts are really, really hard on my tight neck and shoulders, so they are not for every day. 

Inclusive Exercise Playlist

As such, I’ve also returned to my trusty Yoga for the Rest of Us DVD that I’ve used intermittently since 2006ish. I’ve been doing it before work. This is not as impressive as it sounds, since I no longer have to be out the door at 7:30 am, but still. 

I’ve also been taking more walks in my brace and with my poles. Instead of twenty slow, careful, cautious minutes worrying about my back and trying to engage my core, I can now do 60+ slow, careful minutes engaging my core.

A week after getting my brace, Monday, March 15, I put on my ExoSyms to try my first true practice session since November 1st. I no longer walk across the house without poles, instead making sure my poles are right there when I need to walk to the front door. Day 1 was hard. My right hip was so sore and tired. The “Is progress even possible?” thoughts resumed. I did my three up-and-backs along the sidewalk and made my way back to my front door, ready to take them off. The next day, I did it again. The third day, I reported back to my physical therapist and got stretched. Thursday and Friday, I put them on again. It felt like a good week. At least I was doing something with them on. I had this realization: I need to practice on Saturday too. No more giving myself the “day off.” I don’t need a whole “rest day” after only ten minutes of dedicated practice. After all, I’m not pushing myself or taking risks or hurting my back now; I’m slowly building endurance. This is something that needs to happen every day. That’s all there is to it. 

Saturday morning came, and I fully and absolutely did not want to strap myself into my four pieces of heavy carbon fiber and take myself outside. Not for the first time, some of the most relatable lines from Leonard Bernstein’s MASS came to mind, from “I Don’t Know”: 

Why I drift off to sleep

With pledges of deep resolve again, 

Then along comes the day

And suddenly they dissolve again.

I don’t know…

So many pledges of deep resolve we make, only to let them go when we simply would rather not do the thing. My husband said, “You just have to do it anyway. Even as you’re telling yourself you don’t want to, put them on.” He was right, of course. So I put them on anyway on Saturday. And on Sunday. And on Monday, the 22nd, something happened. It’s always hard to know if I’m using my core and squeezing my glutes and “loading the devices” all correctly, all with the right timing for each step cycle. I try it different ways, not knowing which way is right. I remember Jared telling me to kind of lead with my pelvis, but how do I do that and lean into the knee cuffs properly (load the device)? Also, when I’m stretched well in PT, I can actually feel a little looser at the front of my hip for a while. Which means that I have more range of motion in my step. I can actually straighten the knee before the foot comes off the ground to swing through, rather than keeping my knee slightly bent throughout. At least, that’s what it feels like. I don’t know if that’s what’s actually happening. 

So, right now I have a smidge longer stride that I have to figure out how to coordinate with the Exos. Do you know how weird it is to suddenly have a longer stride? It throws everything off if you actually try to use it. But looser hips and a longer stride are very good things, so now I’m trying to see if I can keep it going until my next professional stretching session on the 31st. I’m out there in my back support and my Exos, practicing, trying to incorporate this new stride and coordinate everything. And suddenly I’m walking faster. It’s a week after I’ve started walking in them again, and I’m startled to realize I seem to already be going the same speed I’d built up to last fall. Maybe even faster? 

It felt like I was just walking. It felt really good. There’s no way I can know where I’ll go from here. If or when I’ll progress beyond using poles on a flat ground. All I can do is keep practicing. 

Here’s video from March 23rd, and a side-by-side with the last video we took before the back injury last fall. Any difference? Hard to tell.

Life with ExoSyms Day 3: Training Week at Hanger Clinic

danielleshanti

Training Day Three: Wednesday, 17 June. 10:30–12:30, 3:15–4:15.

Today was a day.

The hoped-for, early morning knee sections delivery does not happen, so we go to the clinic for my regular PT session with Jared. I “warm up” in a room with parallel bars, while Jared finishes up with someone else in the gym. Ryan stops in and tells me the knee sections aren’t ready yet, but he hopes they will be in the afternoon.

With Jared, I start with the ab work that we figured out yesterday. Three sets. At the parallel bars, Jared puts a rectangle of cardboard under one foot. It has carpet on the bottom, so it should slide easily on the linoleum. The goal is to slide the rectangle backward without bending my knee. I do not understand how this is possible. My right foot gets it sometimes, but my left foot can’t quite do it. My right glutes/piriformis area cramps up with the effort, and I start to beat on it with the side of my fist. Like I do. Jared disappears and returns with a massage gun. After I say I’m willing to try it, he puts it right where I point and turns it on. It sounds like a jackhammer. It feels like way too much, but it is more effective than my fist.

It wasn’t this exact one, but you get the idea.

Next, Jared gets another carpet, so I have one under each foot. As I grip a parallel bar with both hands, I try to move my toes out and toes in. I can hardly move the carpet, and I feel it in my glutes and inner thigh. “Do thirty,” he says.

Right now, my left knee collapses inward quite a bit. These rotation exercises are to help strengthen the outer hip so that my knees won’t tangle with each other. In the CP world, this is called a “scissor gait.” With the knee sections on, there will be bulky equipment there to exacerbate the issue. Jared warns me that many patients are surprised at how heavy they are, how much equipment it is to get used to, and that people can sometimes feel emotionally weighed down as well. “We call these devices instead of traditional braces because it’s a whole system. The knee sections, the hamstring assists are optional. You might wear just the left until that side is stronger like the right, and then wear both.” He’s trying to prepare me, wants me to know it doesn’t have to be all at once. I appreciate that. And I wonder what hamstring assists are? I’m ready to come back and find out in the afternoon.

The last thing I do with Jared is stepping over “hurdles.” I say “hurdles,” because you will see in the video that the hurdles have been completely flattened. I practice taking bigger/higher steps, supposedly using my abs and doing my squish. I really don’t know how to coordinate hands, feet, abs. Up and back six times, never really getting the hang of it.

I am very good at stepping ON the hurdles, but not quite OVER them.

 Ryan takes my ExoSyms to prep them for the knee sections and tells us to come back at 3pm.

At the hotel, we eat lunch and I take a nap. When I wake up at 2:30, the muscles between my shoulder blades are extremely tight. The pain is quite strong, quite bad. I’m used to having neck and shoulder tension, but pain like this, right between the shoulder blades, is new to me. I take some deep breaths and ask my dad how to stretch that area. He shows me how to raise my arms up by my ears, cross my hands, and intertwine my fingers while keeping my head up. When I try it, I just can’t do it. It burns so much. I’m crying now, taking huge, deep breaths not really on purpose. My arms and hands tingle. My heart pounds. I take an ibuprofen while Dads rolls a frozen water bottle over my back. Still gulping air. Feeling shaky, a little ill. It’s time to go back to the clinic, but Dad tells me to lie down so he can do the ice treatment a little longer. We won’t be keeping Ryan waiting; he has plenty to do.

We walk the few blocks back to the clinic. (My mom has the car in Seattle.) I wonder if I’m going to make it. Still taking huge breaths, but my heart rate is down now. After we get there and get on our masks and gloves, the ibuprofen seems to be kicking in. I love how sometimes medicine seems to actually help now. What a concept.

I feel a lot better, though still quite tight, by the time I sit down next to my devices. Ryan says there’s “something weird” going on with them. 

Ryan has added a layer of dense foam padding on the inside of the knee cuffs. This is much better, feels firmer holding me up. I had been wondering why the cuffs had so much space between them and my shins. They now also have metal pieces coming out of them in a few places on the outside. I assume for the knee sections to attach to somehow. 

But he takes a knee section, puts the top part over my thigh, and just looks at it. Says he’s never experienced anything like this in ten years. A “knee section” is two pieces that connect at a hinged knee. Everything is made in-house at Hanger. But he sends the knee parts to California to get riveted together because he doesn’t have a riveter at the clinic. Whoever riveted my pair has connected the left bottom piece to the top right piece and vice versa. A human error. And there’s nothing Ryan can do about it except overnight them to California to get fixed and have them overnighted back. Which means I will have my complete devices on my last day. One day of training instead of three. Great. It’s not his fault, and he’s very apologetic. It’s frustrating, but we can’t do anything about it.

I tell Ryan about my muscle tension and he puts me on the vibration plate for a couple minutes. He has me practice walking for a bit and gives me some stretches for my back. Then I change back into my regular shoes and we walk back to the hotel. 

I think Ryan has a more incremental approach than Jared. Ryan: “Go slow. Rest. Get used to them.” Jared: “Do thirty, please.” We really don’t know what my limitations are. I had no idea I was straining my back so much. I need to ease up tomorrow because this is awful.

Food, more ibuprofen, more ice, journal, meditation, sleep. Day three complete.

Life with ExoSyms Day 2: Training Week at Hanger Clinic

danielleshanti

Training Day Two: Tuesday, 16 June. 8:00-10:00.

I start the morning with a check-in/ pep talk from Ryan: The body, the mind, and the ExoSym are like three different sheets of music. They’re all doing different things and they need to come together as one. It’s a big ask for me to use muscles I’ve never used before.

While I wait for Jared, Ryan gives me the assignment of walking up and down the length of the gray walkway with poles, in front of a mirror to watch for hip drop. I’m looking forward to continuing to work on my squish and load the devices properly. I hope I get to use the pole-and corset combo again. But it turns out that I’m in for completely different stuff today.

Jared arrives and tells me to continue walking: 10 up-and-backs. Before I finish, he stops me and asks me to walk backward. I knew I’d be asked to do many things I am not comfortable with. That’s the point. I told myself before I came that I would attempt everything without making a big deal out of it. Walking backward first thing on day two is a big ask. I can’t help but remind Jared that I usually have a hand holding on to something at all times. That it feels very likely that I’ll fall over backward in these things. I’ve already had a few suddenly-off-balance, full-body clenches. Not to back out or protest, exactly. Just to let him know that this isn’t going to go smoothly.

My legs aren’t strong enough to step backward without my upper body leaning forward to try to help. “Try not to hinge at the waist,” Jared says. Yeah, no kidding. I put enormous pressure on my hands/wrists/arms leaning so much on the poles. Plus, these things are heavy. Jared tells me to put my hips forward. When I lean my upper body forward, I am not “loading” the devices anymore; my weight comes away from the knee cuffs instead of going into them. I need to do so much work on my core.

I have over two minutes on the vibration plate today. I feel it in my teeth. It’s so weird and exhausting. But nice? When I step off, my lower legs feel completely heated up. The synthetic sleeves under the braces are so hot.

Next, it’s time for balance work. I stand between two vertical metal bars (like for lifting a barbell while standing). Put my feet together and apart. Try to take my hands off the bars. Step up onto a small block. Jared brings over a mirror so I can see if I’m keeping my hips level. I am not. My body and brain do not know how to correct this. Now take one hand off the bar, then the other. My toes and calves clench and my knees want to buckle.

The only thing my body really refuses to do is let me raise my arms over my head or out in front of me. I’m not ready to let go of the bars for that long yet. Mental block or physical limitation? Both, I think. Perhaps I could have done it were I not on the block, or if I were between parallel bars instead. Next, we try the balance board, again trying to stand level and take one hand away.

Following that, I do some ab work on the floor. That means that I have to get down onto the floor. Jared uses a bench and shows me a couple different positions. One is spreading legs far apart and bending one knee. That one is definitely out. The other is going into a lunge position and bending the back knee to the floor. I try that one. Before my back knee is down to the floor, the ExoSym on the front leg bites into the back of my calf. Hmm. Once I’m kind of kneeling, I’m kind of stuck. I’m supposed to move one hand from the bench to the floor and lower myself down the rest of the way. I do it, ExoSyms clattering together as I position myself on my bottom somehow.

Clear view of the struts up the back.

We try several positions for me to engage my core well. I end up on my back with one leg bent, one straight, a folded yoga mat under the extended foot so it will slide even with my shoe on. I bring the extended leg in and back out, keeping my core engaged, trying to use my hamstring but actually kinda tweaking the front of my hip.

Jared has another patient, so he brings the bench and mat into a side room with parallel bars. He assigns me 9 more sets (eight on the right, twelve on the weaker left). In between each set, I am to stand up (haul myself up using the bench), walk up and down between the bars, and get myself back down onto my back with my foot correctly positioned on the folded mat. Nine times. Sure, no problem. Ryan pops his head in and asks how I’m doing. From the floor, I say I still have seven more. I mean seven more complete sets, but the next time he comes in, I’m up between the bars, and he plucks the mat off the floor and starts sanitizing it. I feel very relieved. My right side is starting to hurt anyway. You can see in the video that Ryan has me progress to only using one hand on the bars. He’s encouraging about my hip drop. Then he tells me he’ll see me tomorrow. I still had four or five more sets to go. Don’t tell Jared.

Walking with two hands and then one. In between sets of ab work on the floor.

I am supposed to come back early in the morning to get my knee sections. I am nervous because I know that they will add so much more bulk and weight. But I’m also ready because they keep telling me how much progress I will make with knee sections. They should be ready by 8am. I will wait for a text from Ryan to confirm.

Food, ibuprofen, journal, meditation, sleep. Day two complete.

Life with ExoSyms Day 1: Training Week at Hanger Clinic

danielleshanti

Disclaimer: This post and the ones that follow are going to recount my ExoSym Training Week at Hanger Clinic in great detail. They are meant to be a record for me and provide an account for CPers who are embarking on their own ExoSym journey.

I’m back from the Hanger Clinic with my ExoSyms. 

Burning question: Was I able to walk out of there, ready to start my new life wearing the devices all the time? 

Short answer: No. It’s going to be a very long process.

Saturday and Sunday are travel days. When we left off, I was lamenting new arm/wrist/thumb pain. And then I was marveling at improvements after an OT session. I have kept up with my new stretches pretty well, even though it feels a little silly to exercise my thumb. I love that I can do these stretches sitting at a table. No getting onto the floor and contorting and straining. Just movin’ my thumb. During the long hours in the car from California to Washington, I am amazed that my shoulder blades feel somehow lubricated. That when I stretch my neck, I can feel the muscles stretch rather than stay clenched in tension. I just hope it will last.

As a point of reference, here is what I look like in mid-June walking on my own and with poles. (After seven months of trying to work on core and glute strength with a home program set up by my PT.) I don’t often see myself walking, and honestly, it doesn’t feel as tough as it looks. It’s my normal. But man, that looks laborious. With the poles, I can see that I’m standing taller, with less side-to-side sway.

Training Day 1: Monday, 15 June. 9:30–2:15.

Monday morning, I feel curiosity and a cautious anticipation. It’s just going to be how it’s going to be. Mostly, as I do my stretches, I am super happy that my body is feeling pretty good, that my neck still feels like the vise has loosened.

My parents and I (my husband stayed home working this time) walk the few blocks from our hotel to the Hanger Clinic, where we are required to don not only masks, but also gloves. I quickly realize my cloth mask isn’t going to work with my glasses if I also want to see, even though it was supposed to mold to my nose. So I switch to the disposable provided. Hands are immediately sweaty. Not the most fun way to begin, but I appreciate the extra caution.

Prosthetist and ExoSym creator Ryan Blanck begins the day reiterating everything from my first trip last November. I have some permanent limitations and I have some weaknesses that have occurred, not because of the original cerebral bleed at birth, but because of the resulting body mechanics and compensations. For example, I have spasticity (increased muscle tone) that’s not going anywhere. I also have a weak core, but I should be able to strengthen that. It’s nice to hear someone tell me a lot that I already know about my body because it’s rare to meet someone who really understands how CP works. The devices are designed for a stronger, future me. It will be tough in the beginning and it will take time. Ryan also emphasizes that we are partners in this, for years to come. He wants text updates and weekly videos showing my progress. He wants to be in contact with my physical therapist. And he really means it.

At 10am, he brings in my ExoSyms, real carbon fiber now, with struts and all. He also brings in my shoes and heel lifts that go inside them from last November. He helps me put the devices on and checks the fit. “I’ll be impressed if you get the shoes on,” he says as he walks out the door to another patient. Maybe he just likes setting people up for success. Shimmy the shoe back and forth until it goes over the heel of the device, and it’s not too hard. He did let me know that it’s easier to do one device and one shoe before starting on the other leg, otherwise your carbon-fiber covered feet just slip everywhere. 

Putting on my ExoSyms for the first time
Ready to take my first steps

Yes, the devices are heavy and bulky. They still feel like ski boots, but this time I am prepared for that. Ryan is still not in the room, but I pull myself up between the parallel bars and start walking up and down. Heavy, awkward, loud. But now I know that I need to learn to use them and to build up muscles over time. I am not able to imagine, right now, what it will feel like to move in them more freely, but I believe that it will happen.

ExoSyms are clunky and loud. But you can see the heel-toe gait that I feel rather indifferent about in this moment.

When Ryan returns, it’s time to get casted for the knee sections. Aha, that explains why there is a cast cutting saw and casting supplies by my chair. Somehow it didn’t occur to me that the knee sections are just as customized as the ExoSyms themselves. Ryan starts by wrapping my leg in plastic wrap, starting at the bottom of the knee cuff on the ExoSym and going all the way to my upper thigh. It’s certainly an interesting, rather intimate experience. We roll the legs of my shorts up, with my consent. I can barely stand with my legs far enough apart for him to squeeze the roll of plastic between and around my thighs. After the plastic wrap comes the plaster. Then I have to stand there, keeping my knees as straight as possible while the casts dry.

The yellow strips that he uses to guide the saw are up the back of my leg this time, so I cannot see him as he cuts the casts off. I grip the parallel bars tightly as the saw starts up, and the noise of it cutting into the plaster, combined with the intense vibration, takes me straight back to getting casted for AFOs as a child. The dreaded “tickler.” It does actually tickle, because the back of my thigh is very ticklish. But not in a good way. At all. I breathe through it, and one and then the other are done. Ryan takes the casts away and I practice walking more, with my poles this time.

Trying to walk with poles

Next, we go out to the front desk to hand over the cashier’s check for half the total amount. (I chose the in-house payment plan of half up front and the other half spread over nine months.) Thanks, Mom and Dad. I sign some papers and receive a hard copy for myself.

Then we return to the gym area. During this time, because of COVID-19, they ask that patients only have one support person in the gym, so Mom and Dad take turns being the photographer/videographer.

Ryan introduces us to Jared, the physical therapist. He then introduces me and my cerebral palsy to Jared. Ryan recommends training on flat surfaces only until my knee sections are ready, and then he’s off to other patients. Jared tells me a little about himself and his approach. He lets me know that, though he may seem like a drill sergeant sometimes, he has enough in his repertoire that if there’s something I’m not comfortable with, he will be able to adapt it. He reiterates that these devices are designed for a future, stronger me. He realizes that sometimes our minds understand actions that our bodies don’t know how to do yet. He asks what I want out of training, and I tell him my three goals: walking, stepping up and down (as from a curb or bus), and getting down onto and up from the floor.

We go over to the parallel bars, and the first thing he teaches me how to do is “load” the devices. This means leaning into the knee cuffs, putting your weight into them and keeping it there throughout the step. First, he has me lean forward onto my hands until my heels come up. Then I take steps on the balls of my feet, trying to keep my shins into the cuffs and engage my core. Next I come down from the balls of my feet, and I’m supposed to do the same thing–no leaning forward. I’m doing better keeping my weight into the device with one side than with the other. Jared demonstrates what I’m doing wrong, and I try to fix it. Then he gives me a different verbal cue, and that works better. I am praised for being able to modify my gait successfully. Synthesizing verbal and visual instructions into a physical outcome is no joke.

After learning to load the devices, it’s time to work more on core engagement. Jared asks if I’m willing to try wearing a tight belt with a pole down my back. Sure. When he returns with the equipment, he asks my permission to put the belt around my waist. When I say yes, he does so, and tightens it. It’s REALLY tight. The pole goes between my shoulder blades and through the belt, creating a gap at my lower back. Jared puts a mini bottle of baby powder into the gap, telling me to squish the bottle using my core. Let me be clear. Intellectually, I understand the action. It’s a pelvic tilt. I have never been able to do this well, especially while standing. (My pelvis is busy when I’m standing, and you want me to tilt it?) 

I don’t know that I actually squish the bottle, but my back contacts it, at least. As I “squish,” my heels come up off the floor. This is what everyone means when they say “engage your core” when walking. It actually helps power each step. Huh. 

Jared tells me, “Do 100 please.” Then he amends, “You already did ten, so do ninety more.” So I stand there holding on to the parallel bars and do ninety more squishes. Jared had already let me know that he only counts to one, so I knew to keep track myself and never ask him what number I’m on. When I make it to 100, I walk. It takes several tries to put the squishes together with walking between the bars. 

Next Jared gives me my poles and takes off my corset. I immediately feel like I’ve lost the squish, even though I’m keeping my weight into the knee cuffs. I ask if it’s possible to cheat somehow, because I seem to be doing it, even though I can’t feel it. Jared assures me that there are several indicators that I am doing it correctly and asks for one of my poles to demonstrate. I hand it over and I feel, right at that moment, as if I’m teetering on the edge of staying upright. I can barely listen and feel a little panicky. I want to reach out and take my pole back from him. Relief floods me upon its return. 

I walk along the gray walkway really trying to load my devices, really careful and concentrating. Then he asks me to walk as fast as I can, without thinking about all that. It’s maybe half my typical speed? I don’t know. Extremely slow and laborious. And not yet possible at all without poles.

We return to the parallel bars and Jared has me step up onto a very low box and down. Up again and down backwards. You can see in the video that I do a double take at that. (Yes, we did discuss how Ryan distinctly said flat surfaces only.) I can do this, stiffly and slowly, as long as I am holding on tightly with both hands. 

I tell him at some point, during some activity, that my toes are gripping and my calves are tightening up. Ah, he says, in recognition. He has me step up onto an electric vibration plate next to the parallel bars. I hold on to one bar with both hands, nervous. I have heard of these, but I’ve never used one. He asks whether I want him to start in at full speed, or go low to high. I say start low. He turns it on, and before I can process any sensations, it’s all the way up. Holy moly! Almost indescribable. My vision is vibrating. My brain. If I shift, I feel it in my vertebrae. By turns amazing and completely unpleasant. Jared leaves me there, vibrating for two minutes or more. This is a very long time. When he returns, I am more than ready to get off. I suppose it could relax me if it didn’t freak me out.

We try to do more balance work, like raising my arms above my head. My toes are relaxed for one or two seconds before they grip up again. Lastly, he tells me to grip a very thick band in both hands that’s looped around one bar and raise it straight up. This I cannot do at all, but I am stronger on one side than the other. Jared is noting how my body functions.

My first session with Jared is over! I practice walking some more while waiting for Ryan. When he asks how everything is going, I tell him that my right heel is burning, and my left a little, too. He has me take off my ExoSyms to make some adjustments. We wait a long time, about an hour. If Ryan tells you “a few minutes,” be prepared to wait longer.

He brings back my ExoSyms with more arch support, to offload the heel. When I put them back on, the arches feel very noticeable, hard and uncomfortable, but the heels are better. Soon, I don’t notice the arches so much. Ryan bids us goodbye, telling me to do ten good steps in the hotel room, without letting the left hip sink. “Ten good steps are better than 100 bad ones.” It’s 2:15 by the time we leave, and we’d been there since 9:30. Lesson: If something hurts, tell Ryan as soon as you realize it, just in case he’s less busy then. Also, if you have downtime and you’re mobile, use it for restroom/water/food, even if you think it’s just going to be a minute. You’ll probably have plenty of time.

Recall that we had walked to the Hanger Clinic from the hotel. Recall that I had just put on my ExoSyms again to check the heel/arch. Mom and I walk out of the clinic, so relieved to take off our masks and gloves and breathe freely again. I figure I might as well try walking back to the hotel. I don’t want to sit down and take everything off and switch to my other shoes. It’s not that far, and it’s flat. Sure. 

As soon as we leave the building and reach the parking lot, I realize it’s a bad idea. I am tired. I can’t remember any of the pointers I’ve been given, and my gait feels so uneven. Like I’m lopsided. Then I reach the first curb cut–up–and I almost fall over backward. Unlike any experience I’ve had. No wonder Ryan told me to stay on flat surfaces. There is no ankle flexion when in an ExoSym, and inclines need a special technique. I haven’t learned to do that yet. There are several more curbs to come. I walk so slowly, inching along, trying not to panic at the course I’ve set myself on. 

We make it to the hotel, finally. And I’m never doing that again.

I am very tired, and I have VERY sore glutes medius. Food, ibuprofen, journal, meditation, sleep. Day one complete.

Actually Happening: Cerebral Palsy and ExoSyms

danielleshanti

My trip begins tomorrow, and I spend next week at the Hanger Clinic in Gig Harbor, Washington, learning to use my ExoSyms.

But first, I must document yesterday, June 10. At 9am I went to my first occupational therapy appointment for my wrists/hands/thumbs. I gave her the whole story about using trekking poles and then having pain and not using them (for months with no improvement). And now I need to use them, so I need help. From behind masks, we did the strength and range-of-motion baseline assessments. My therapist told me that it sounds like I have several things going on (yay). She gave me exercises for De Quervain’s tendonitis and the radial nerve. Showed me how to massage the palm side of my forearm with two tennis balls taped together. I’ve never thought about those muscles being tight before, but she said they were. She massaged them with cocoa butter, which was the first time I’ve had human contact from someone other than my spouse in three months. She showed me how to tape my thumb and wrist and also approved of the brace I’d tried. Made adjustments to my trekking poles to try to keep my wrists in a good position. Sent me on my way. Productive appointment.

Later in the day, my neck and shoulders–the whole trapezius–began to feel different. Tingly. A little like the clamp on my neck that’s been pulling my head and shoulders painfully toward each other for four years was…loosening. Some. I got down onto the floor and carefully went through the stretches I’d been given years ago (and still attempt regularly). And I felt actual stretching, not just fighting against tension. Huh. Perhaps this was how it was supposed to be all along. Perhaps this is why physical therapists often seem a bit skeptical/frustrated when I tell them stretching only feels the same or worse. Because I’m supposed to feel this instead of that. Maybe now all those things I’ve tried before will actually work? Quick, somebody give me some Flexeril! Kidding. Sort of. After stretching, I meditated (third consecutive day!). And darned if I didn’t achieve a full-body floaty relaxation. Wow. What’s going on? This morning, when I sat down to put on my shoes, I think it was just a bit easier to bend over and reach and pick up my shoe from the floor. 

So what did it? Did I just need someone to massage my forearm with something that smelled like chocolate? I’ve had my forearms massaged before. Maybe not for that long in just that way. I am getting better at meditating. Maybe that’s it. Distance learning is finally over for the summer. Maybe that’s it. 

It’s not as though my neck pain is gone. There’s still a long way to go. But now I know that less pain is possible. That I can continue to work to loosen the clamp. 

It’s ExoSym time! I’m trying to be excited and positive, but honestly, I’m scared of how hard this is going to be. I’ve never asked my body to do something like this, and I don’t know how it’s going to handle it. I cannot expect to strap them on and go like so many others. Another ExoSymmer with cerebral palsy pointed out that it’s a little like having surgery. A period of rehabilitation must follow. There might be pain; there will definitely be soreness. We have to give ourselves time to adjust and build our strength. Weeks. Months. Years.

Megan, who blogs at Wheatfield Ramblings, has very helpful advice for people who are just starting their ExoSym journey. One tip she gives is come with goals. Here are mine:

During my week at the clinic, I would like to learn how to:

Walk

Step up and down, as with a curb or onto and off of a bus

Get down onto and up from the floor

After all, I have to start at the very beginning. It’s a very good place to start.

Spoon Theory and Cerebral Palsy Time

danielleshanti

You know how there are dog years and human years? A thirteen-year-old dog is old, but a thirteen-year-old human is not. 

There is also cerebral palsy time. Generally speaking, people with physical disabilities use more energy than their able-bodied peers to do the same tasks. I don’t know for certain how much more energy I use to walk a mile than a nondisabled person. But I’m pretty sure it’s a significant amount. My fitbit says my heart rate is 90 or more, while my husband’s is in the neighborhood of 70.

Spoon Theory was originally coined by Christine Miserandino when she was trying to explain to a friend what it feels like to live with lupus. It’s meant to help someone understand invisible disabilities, or conditions that are disabling but are not immediately visible. It has since been applied to disabilities in general, and some even embrace the term “Spoonie.” I do not, because I do not need any cutesyfication of my life.

Spoon Theory goes something like this. Everyone starts out the day with a certain number of spoons. Various tasks use up various numbers of spoons. When you’re out of spoons for the day, you are done. Let’s say I have twelve spoons. For me, taking a shower uses up two spoons, getting dressed one, putting on shoes, one. Getting to work could be one or two or three, depending on whether I walk or bus and whether I have a seat on the bus or stand. So let’s say I’ve used up six spoons and it’s only 8:30 in the morning. Time to start my day. Able-bodied people maybe use–one or two? So, I don’t shower in the mornings. I conserve those spoons for the work day and shower later. Cooking takes spoons. Standing, chopping, getting chopped food into pot without spilling. Going back and forth for ingredients and utensils. Emptying the dishwasher, as I’ve described before, takes spoons. Laundry. Spoons. If you sleep well, you can replenish your spoons. If you don’t, you may start out the next day with fewer spoons. Chronic pain affects sleep, etc. etc. Some days might be better than others and you seem to use fewer spoons on the same tasks. 

Story time: I stayed with my sister for a week and did the cooking. We picked out some tasty new recipes that were more complex than my usual beans-and-rice fare. Her kitchen is way bigger than mine and I didn’t know where anything was. Sure, new recipe, bigger kitchen, and new layout will take some getting used to. But wait, the stove is in the corner, with no countertops next to it. It’s one of those cool antique gas ones, and I literally cannot touch its surface safely once the burner is going. So I’m supposed to bring a dish of mixed ingredients/liquids over to a bubbling pot and pour it in. Remember, I have trouble stopping my body’s forward motion. Enough with the excruciating minutiae. The meal took many spoons.

Sometimes I feel like I should/could be doing more. I work 23 hours a week (well, I did when school and tutoring were held in person). I know that all of you who work full time and more can hardly imagine the luxury of working part time. So much time to fill with all the things you actually want to be doing! 

But really, when I make it through the day, even if that day ends at “only” 2pm, I feel done. Twenty-three hours in CP time has to be close to forty in able-bodied time. 

Most nights, I call from the bedroom to my husband in the living room, “Did I make it?”

And he’ll respond, “9:02.”

“Yes! Good night.”

Sometimes, it will only be 8:43, and I’ll have to make myself stay awake for seventeen more minutes. 

Functioning takes energy. Fatigue is real. Pain is real. Working part-time is okay. A person’s value is not measured by how many paid hours are in their day. That’s a hard one, American people, but it’s true. 

Not all disabilities are immediately apparent like mine. I’ve had to grow and learn and discover that there are many, many conditions out there that are disabling. What’s more, chronic conditions are loads of unpredictable fun. People can feel okay to walk one day, and need assistive equipment another.

If someone uses disabled seating, or restrooms, or parking–believe them. Remember that you do not know this person or what they live with or what it feels like to inhabit that body and that brain. Let’s all try to be kinder, more empathetic. Let’s all try to imagine others complexly.

Cerebral Palsy and Pain Management: What I’ve Tried

danielleshanti

For the various muscle tensions and pain that come with my cerebral palsy, here’s what I’ve tried and my experiences with them.

Moist heat/cold packs: These feel nice in the moment, but offer no lasting effects. Nonetheless, I have a heating pad plugged in next to my bed at all times, and various herb/grain packs in the freezer that I use both heated and chilled. Mostly, they are comforting and make me feel like I’m doing something to take care of myself even though I know it doesn’t really help.

Muscle rubs/sprays: Various brands, most of which give a cooling sensation. Again, they don’t do much. Every once in a while, I think I can feel my neck let go slightly, for a moment. I have also used them in combination with other methods.

Various OTC pain relievers: Don’t you love it when doctors ask, “Have you tried ibuprofen?” Why, yes. Yes I have. “Did it help?” No. No it did not. If it had, I would not have felt compelled to make an appointment and get myself to this office and talk to a doctor for fifteen minutes. The truth is, I’ve never been able to tell if NSAIDs do anything. They might do a little, sometimes? For me to really know, I’d have to do the exact same scenario two ways, one medicated and one not, and directly compare them. But the time space-continuum doesn’t allow for that. Is it really true that people can take ibuprofen and actually feel better? 

Voltaren: prescription topical gel (designed for arthritis) on my knees. Nada.

Flexeril (cyclobenzaprine): This is a muscle relaxant I was prescribed for my neck, only meant to be taken for two to three weeks. I was uncomfortable with the idea of being on prescription drugs. Because it can cause drowsiness, my doctor told me to take it before bed. I did that once or twice and felt no different in the morning, so I put them in the back of the medicine cabinet. Months later, when I was having a rough neck-pain day, I decided to take one. I promptly spilled the remaining pills into the (wet and not particularly clean) bathroom sink, and that was the end of that experiment. 

Physical Therapy (childhood and adult): I had PT as a young child, and again for rehabilitation after surgery. Since my CP gives me muscles that are both tight and weak, PT focuses on stretching and strengthening, especially my hips (and hamstrings and adductors and etc.). As an adult, I’ve been referred for my SI joint, knees, and neck. None of my pain has been an acute onset as a result of injury. My pain just happens. All the issues I’ve ever gone to physical therapy for are still there. That would lead me to the conclusion that physical therapy does not work. But it’s not that simple. A physical therapist’s job is to set you up with a program you do at home, supposedly multiple times a day (ha!). Sometimes I do the program consistently for a stretch of time, and sometimes I don’t. Most often, I get home and try to replicate what we did and find that I’m straining something else in the process. Then I go back the next time and adapt it, etc. If a therapist could visit my home every morning and evening, maybe there’d be progress…? Even when I do succeed, like in stretching and strengthening my traps, that has not resulted in any noticeable decrease in my overall neck pain. While that’s extremely disheartening, I can also say that PT is probably not making anything worse overall, so I might as well keep trying it. At least I feel like I have someone who is trying to help me. And it’s my cheapest in-person option.

Ultrasound: I’ve had ultrasound done on my neck and shoulders a couple times as part of a PT session. It is meant to give a deep heat to the muscles and increase circulation. It was lovely to lie on my stomach, with the headrest set at just the right angle, and have some prewarmed goo gently massaged into my neck. Sure, the deep heat was relaxing. Maybe if it were for an hour instead of ten minutes, and I could fall immediately to sleep afterward? No lasting effects.

Pilates: I attended private pilates sessions for a number of years, even going twice a week at times. Did it help? I couldn’t tell you. I do know that I enjoyed having one-on-one time with an extremely knowledgeable and empathetic professional in a nonmedical setting. I can tell you that I became ever so slightly stronger and more flexible. But it was also during these years that the knee pain and neck pain appeared. I’m not blaming the pilates at all, just pointing out that it’s hard to measure improvement on the pain scale when new issues present themselves. I enjoyed being able to lie down while another person grabbed all the pillows and props I needed to be supported just so. I enjoyed being able to focus on a particular movement or muscle group. I enjoyed trying to apply various verbal cues to my body (“Imagine your pelvis is full of sand…”) and being cheered on: “Yesss! Yesyesyes!” As though, sometimes, I was able to do something well.

Massage: I’ve had several massages. I really enjoy the massage while it’s happening. I like that attention is paid to the palm of my hand and to my eyebrows, to muscles large and small. I like the quiet and the dark. However, I lament the whole process. Taking off my shoes and clothes, climbing onto the table, getting settled under the sheet. Having to turn from my front to my back in the middle of the session, on something raised high off the floor and narrower than a bed. And then, when I’m nicely relaxed, having to climb down off the table, put on my clothes and shoes, walk to the bus stop, stand and wait, climb into the bus, and get seated. Is any of the relaxation left by then? Not really. 

Acupuncture: I only did four sessions of acupuncture. During the first one, I found it so stressful that I was supposed to stay still with needles in me that I could not relax. In fact, I think the effort it took not to move made my muscles tighten more. The next session I did better at deep breathing and tried to relax. But I felt no difference. Repeat the whole process with clothes and table and bus from above. After two more tries, that was enough.  

Feldenkrais / Anat Baniel Method: I heard about Feldenkrais from another person with CP who was enthusiastic about its benefits. It’s about movement, biomechanics, neuroplasticity. I gave it a good try–ten sessions. The woman I worked with had never had a client with CP before. I lay on a table and she moved my body and/or I followed her instructions. I felt heavier/more relaxed into the table when we were finished, but it never lasted. If it were actually affordable, it’s something I wouldn’t be against continuing. I think mindful movement can only be a good thing. Anat Baniel is a holistic “neuromovement” method that branched off from Feldenkrais, and I did one session. Intriguing. Expensive.

Feldenkrais

Anat Baniel Method

TENS unit: I have only tried this one time. I didn’t feel comfortable using it on my neck, even though that is currently where I want relief the most. I did not like putting the sticky pads on my neck, nor the pulsing vibrations, so it did not get a fair trial. I did not feel any benefits during or after the one time I tried it.

Supplements: Curcumin with black pepper, magnesium taurate. Curcumin, from turmeric, is an anti-inflammatory and black pepper aids in absorption. Took one bottle faithfully. No difference. Magnesium is supposed to help muscle cramps. Took one (or two?) bottles faithfully. Some people with CP take supplements and do seem to notice a difference. I did not. 

Weighted Blanket: Weighted blankets have become a much-beloved item for people on the autism spectrum, and for those with anxiety. And really anyone. They are calming and comforting and help people relax and sleep better. I’ve tried two, after much searching for blankets that are not polyester and do not contain plastic beads. I faced a conundrum when choosing the weight of the blanket (based on my size and weight). Would I need a heavier one because my muscles are extra tight? Or would I need a lighter one because my muscles are weak? For me, going lighter than the recommended weight would have been better because it’s already hard enough to change positions while sleeping. With added weight, it’s a true struggle. As far as results, I get too hot while sleeping to appreciate the blanket for most of the year. When I’ve tried it, I haven’t felt more relaxed or slept better. I do enjoy it for sitting and reading or watching a movie, after the work of getting situated under something heavy–but only in winter.

CBD oil: I tried one liquid from Green Mountain (hemp), and I couldn’t tell any difference. When a new dispensary opened downtown, I went in and tried their recommendation (they rolled their eyes at Green Mountain). It was Papa and Barkley capsules. Honestly, I don’t remember if it had a bit of THC with it or not. No noticeable difference. Then I tried Charlotte’s Web, the fancy famous one helping people with seizures, pain, and all sorts of conditions. You’re supposed to take it twice a day regularly, not just as needed. So I did. No noticeable difference.

CBD lotion: No difference.

Cannabis: THC reacts on the body’s cannabinoid receptors which produces an anti-inflammatory effect. The only incarnation of cannabis I’ve tried so far is cannabis-infused dark chocolate, which contained 10mg of THC. Although I cannot say I was completely comfortable with the effects on my mental state, physically it was quite something. My limbs felt heavy and relaxed and I don’t think I felt pain. I wasn’t aware of my SI joint anymore. I carefully put myself into a hip/adductor stretch, and my knee just kept going outward (stretching more than it ever does). I could turn my head from side to side without pain and it just kept going. My thoughts went thus, “I feel a lack of spasticity. Is this what people without spasticity feel like all the time? Everyone with spasticity should be able to feel this.” One second I felt totally out of it: “Ugh, I don’t want to do this again,” and the next moment: “This is amazing. I’m so glad I have the ability to do this again.” I lay down and my husband used our electric muscle massager on my legs. I was awed by the result. My muscles were so deeply relaxed they felt heavy/not quite there. Almost like a layer of separation between me and my body. My muscles felt like they were melting at the touch of the massager. I didn’t feel a single involuntary tensing of the muscles; it’s like they were incapable of tensing. My eyeballs felt relaxed. My brain felt relaxed. “Is this what people without anxiety feel like? Or just high people?” My body weight felt like it was so deep into the bed. Like nothing was being held back in tension. Nothing was tense–all was given over. That feeling lasted a couple hours before I started to come out of it. It’s like I could feel my right hip rematerializing inside my body. I felt woozy. Sleep wasn’t magically good, but I felt more relaxed the next day than is usual, and when I stretched I could feel my muscles actually let go. It even lasted a couple days. This may have been psychological in part–the knowledge that something finally did affect me, the knowledge that relaxation is possible. It lightened my mental/emotional load. I was interested to keep trying cannabis, to see if I could have some of the physical effects without the mental ones (this is supposedly what CBD can do).

I tried a half dose. It didn’t really work. I felt a bit out of it and woozy, without the positive part. I tried taking it right before I went to bed, so that I could sleep through being high but still get the relaxation. Didn’t really work. When I took a full dose again on a bad pain day, it didn’t have the same effect either. Some pain relief without the full-body letting go feeling, but with effects I didn’t really like. I’ve tried taking nibbles of the chocolate over a longer period to simulate something more like smoking. And I’ve never again had the experience of the first time. I don’t particularly enjoy the high nor the wooziness I feel coming off of it, so it remains an enigma that I’m not fully comfortable with.

Meditation: I don’t know where my incorrect idea of meditation came from. I always had this idea that you were supposed to sit there and clear your mind. Not think about anything. Well, I knew I couldn’t do that, so I never gave meditation serious thought. I did always enjoy the Final Relaxation Pose (savasana) at the end of my Yoga for the Rest of Us DVD. The guided body scan from head to toe, a gentle voice telling me to imagine soothing comfort flowing to each muscle group. Was I in less pain? No. Was it nice? Yeah. I’ve continued to try other guided meditations, both body scans and guided imagery. I’ve learned that no one expects you to maintain a blank mind. Your mind will wander and come back. That’s okay. That’s expected. Mindfulness is about being in the moment without judgment. The great thing about guided meditation is that someone is there telling you what to think about; your mind isn’t blank, but focused instead. 

One meditation I found on youtube talks about the intention of kindness and compassion toward your body and yourself, wherever you are. “And it’s okay if you don’t feel it. We’re just practicing.” You see, we’re just practicing. I can do that. Another one I love has a guy who says my body will relax in its own time, and in its own way. More than once, I’ve just started to cry. And once or twice, I’ve felt it. A little bit of floating. It’s actually a little alarming, except that I know everything is okay. I can sit here, now, and relax one side of my face and then the other. My eye socket, my jaw. I can feel my cheek droop. I didn’t know how to do that before. If I could apply that ability to my trapezius in any kind of lasting way, my quality of life would be much improved. I have not achieved a daily meditation practice yet, but it really seems to be my best option. It’s free. I can do it lying on my bed. And it takes as little or as much time as I want, whenever I want.

Note: I have looked into, but have not tried, both Botox and Baclofen. Both of these are commonly used by children and adults with CP, though I think more in the moderate to profound range. They don’t seem like a good fit for me right now.

Further Note: Most of these one-on-one sessions with any kind of practitioner are not covered by insurance and the cost would be prohibitive for the vast majority of Americans. If cost were not an issue and I could be teleported with no effort, I would have daily pilates and massage sessions.