Tag: CP

Traveling with Cerebral Palsy: Flying and Road Tripping with a Walker

danielleshanti

In September 2025, my husband and I took a trip to Colorado. This was the first time I flew with my posterior walker. Previously, I had traveled with collapsible trekking poles that I collapsed once we arrived at our gate and put under the seat in front of me on the plane. Because I am an anxious person in general, I was really nervous about flying with a walker. We always only travel with carry-ons and don’t check luggage, so dealing with a large piece of mobility equipment felt like a big change.

Having a walker is a big change. I started thinking about getting one years ago because using poles puts so much strain on my wrists, forearms, neck, and shoulders. I knew exactly what I wanted: a posterior walker with a fold-down seat. And I wanted it to be purple. Posterior walkers are very common for people with CP because the around-the-back design helps us keep our hips over our ankles, rather than being hunched and/or leaning forward on a typical front-facing walker. I’ve never tried a rollator, the ones with four wheels, handles that are raised and include built-in brakes, and a seat. I know they work for a lot of people. I just didn’t want a big, bulky piece of equipment in front of me, potentially blocking my view of obstacles, and I didn’t want to have to turn my body around every time I wanted to sit. 

I stalked the Nimbo website for a long time before finally making my purchase, and I was really excited to try the walker out when it came. I especially loved the shiny purple shade! If I’m going to use a mobility aid, it might as well be bright and beautiful. Purple is much more fun than the boring metal ones I used as a kid. Even though I was excited about the color, and I knew it was going to give me the stability I needed while taking strain off my upper body, I didn’t really want to use it in public spaces. It takes up so much more room than poles. I know how far we’ve come to make public spaces accessible, and I know how far we still need to go. 

I started by taking walks up and down the sidewalk in front of my house, getting used to the way I had to lift the front wheels ever so slightly when going over a change in terrain. (Like coming off a curb cut and into the street to cross. The change in height between the concrete gutter and asphalt road is enough to stop my wheels.) My upper body immediately felt less strained, and I didn’t have to grip the handles as hard as I do with my poles. But there’s one thing I don’t like about my walker. Because I added the fold-down seat, I find it really, really loud. The hinges are metal on metal and rattle loudly, even when we tighten the bolts a bit, and even when we try to pad them. The noise is incessant. It makes it harder to hear. I find it really obnoxious and grating. The bumpier the surface, the louder the rattling. I am very appreciative of smooth sidewalks. (I think I am extra-sensitive to sound. Don’t let it deter you from trying one, but do be prepared.)

After I had decided for sure to bring the walker on the trip, we needed to practice using it. I had taken it around the neighborhood and into a few businesses, but using it in public wasn’t comfortable for me yet. My husband also needed to get used to folding it and unfolding it since that’s not something I can physically achieve by myself. It takes two hands; therefore, I would tip over if I attempted it. 

We decided I’d use it at the farmers market. Years ago, when I walked unaided, I used to enjoy the farmers market, though I’ve always found it a little stressful navigating the crowds. A lot goes into maneuvering around people with bulging bags, oblivious children, groups eating and chatting. Then there’s the actual procurement of produce: navigating through people, picking out your fruits or vegetables, bagging them, handing them over to be weighed, getting out the correct amount of money and handing it over, taking your purchase back, and getting it and the wallet properly put away, all while surrounded by others doing the same. For me, there’s definitely a bit of physical/mental/sensory overload. 

Over these past several years, we’ve hardly gone to the farmers market. Honestly, most Saturday mornings, I want to stay in, in my pajamas. But with the trip looming, one Saturday, I got dressed and got my shoes on, and Bradley collapsed the walker and loaded it into the backseat and off we went to Central Park. Once I was standing with my walker and began walking toward all the people and tables, I immediately realized how much safer I felt moving in a crowd. The ground was uneven in some places, like navigating a bricked area around a tree, so I still had to be careful with my wheels and watch where I was going. Eventually we made it to the covered area where the majority of the produce sellers have their tables, and where the concrete is wonderfully smooth. I walked through the crowds. I strolled through the crowds. I don’t stroll. I am not able to stroll without assistance. There is nothing easy about walking unaided. With my walker, I was about to look around with ease, and walk without straining, without fear of bumping someone or getting bumped. One thing I love about being in public with a walker is that it’s like a force field. It broadcasts, “Hey, watch out and give me space! Disabled person coming through!” 

I felt such relief and happiness at the farmers market with my walker, and that made me completely certain that bringing it on the trip was the right decision. When the day of the trip arrived, I entered the airport with my walker. I must say, going through security with a mobility aid is a nightmare. I do not take my shoes off, and I wear AFOs in both shoes. This gets me a full-body pat down and wiping of my shoes and hands, which means I have to sit and wait for a female worker to come and do it, which can be quick, or very, very long. In the past, they’ve put my poles through the metal detector. Obviously, they can’t do that with a walker. I waited for assistance for so long at security this time. I can’t stand with the feet on the footprints in the body scanner, but I could have walked through the regular metal detector unaided. They barely swiped my walker at all–it was waiting for a woman to do the pat down that took so long. I’ve been putting it off for so long, but if you’re able, DO THE TSA PRECHECK before you travel and save yourself so much time and stress.

Once we were through security, we had to find our gate, and it was a long walk. Good exercise before sitting for hours. With a walker, of course, I didn’t have the option of using the escalators, so we had to locate elevators. I also didn’t feel comfortable with the moving sidewalks, so I walked alongside to see if I could keep up with my husband. I also left my walker outside the restroom with my husband while I went inside, as I didn’t want it blocking the walkway, nor did I want to maneuver it into and out of an accessible stall if I didn’t have to. I am grateful to still feel able to leave it when I prefer to. 

We arrived at our gate, and it was time to gate-check my mobility device. It was NO BIG DEAL. I went up to the counter and told them I needed to check my walker. They asked if it folded up and filled out a tag and handed it to me to attach to my walker. Well, first they handed me the wrong one. There are apparently different ones depending on what you’re checking (including car seats, wheelchairs, etc.). I used my walker all the way until the door of the plane, at which time, my husband collapsed it and handed it off to someone. This may have been the most stressful part (for him), but we did board early with the people who needed extra time, so it wasn’t too crowded.

We were on a smaller plane, so when we disembarked in Denver, we walked down a series of long ramps to the tarmac. And there, at the foot of the final ramp, stood a large, multi-level wheeled cart with strollers and car seats on it, and my bright, shiny purple walker. My husband was tasked with carrying both our backpacks, lifting the walker down, and unfolding it for me. (Thank you!) Navigating airports always involves lots of walking and standing and trying to find the rental car place, where the wait is then inevitably long. I used my fold-down seat more than once, including at the shuttle stop to get to the rental car office. The great thing about airport shuttles is that they are designed to handle large, bulky luggage and equipment like skis or snowboards, so it was again, no big deal to fold up my walker and stow it away on the shuttle. (The shuttle was not accessible for wheelchair users, but I was able to climb aboard.)

So we made it to Denver and we rented a car, and my husband got very good at folding and unfolding my walker. Our weeklong trip was centered around a “hot springs loop.” I did not bring my walker into any of the hot springs facilities, but I did use it around the towns, including inside a small coffee shop, which was a tight fit, and it was a little tricky to find the accessible entrance. While I sometimes felt conspicuous, I was mostly very happy to have it with me. I took it on paved trails, accessible botanical gardens, and into public libraries!

Here’s an important tip I did not learn until after I returned home: Check all the screws/bolts and endcaps on your walker before and after flights. After vibrating for hours inside an airplane, small pieces on the walker are apt to be loosened. And there are a lot of small pieces holding a walker together. I didn’t notice I was missing a couple pieces until I got home. I went on a walk and noticed a washer on the sidewalk and mused aloud to my husband that it looked like it could be off my walker. After I parked it in the garage, I saw that, indeed, I was missing a washer and bolt, and one black plastic stopper that closes up the end of the metal tubing. I guess things rattled loose on all the travels, and I’m glad the metal pieces waited until we were home to finally fall off, and I was able to locate them on the sidewalk and put them back on. We also tightened some pieces on the hinges and they rattled slightly less and were therefore slightly quieter. Checking and maintaining my equipment is new to us!

I dreaded the trip. I enjoyed the trip. And I’m glad I took my walker. Here’s another gentle reminder: If you are thinking that maybe it’s time to look into a mobility aid, it is. It’s time. Both times I started using one, with my poles and my walker, I had an amazing feeling of “Oh my gosh this feels so much better and safer! I should have tried this a long time ago!”

Enjoy these photos. Why yes, I am wearing the same gray trousers in every photo. But those are four different purple shirts! 

Denver airport, shuttle stop to the rental car place
Yampa River Botanic Park, Steamboat Springs
Atkinson Canal Trail, Glenwood Springs
Vail Public Library (They had a puzzle table inside, and paved trails right outside!)
Betty Ford Alpine Gardens, Vail

Aging with Cerebral Palsy: Can I Still Move My Body Every Day at 44?

danielleshanti

When September arrived this year, a week-long vacation to Colorado loomed. Many people would be excited at the prospect of a trip. I am mostly exhausted by the idea. Over the past months and years, I have become less and less active and more and more tired. With the heat of summer, it was easier than usual to avoid doing the things that I knew would be good for me: stretching on my dedicated physical therapy platform, going for walks, obviously, and participating in the free adaptive exercise classes online or the water aerobics classes at my neighborhood pool. The thought of leaving my home and my cat, traveling, facing airports, shuttles, a road trip, checking into and out of various accommodations that may or may not be accessible… It was all a lot, even though taking a trip was also a good thing. 

We were leaving on September 14th so when September 1st rolled around, I knew I needed to do something to prepare for walking through airports and climbing in and out of a rental car. I took a walk. Not a long walk, just fifteen minutes. But I made myself take a walk. I took off my inside shoes and I put on my outside shoes. I went down the garage steps and I opened the garage door and I maneuvered my body into my posterior walker and I closed the garage door and I walked down my driveway and I turned left onto the sidewalk and I walked. And then I turned around and came home. I parked my walker in the garage, and I climbed the two steps to the house, paused to press the button to close the garage door, stepped over the threshold, closed the door behind me. I sat on the bench, took off my outside shoes and put on my inside shoes. 

Every moment feels like work. Every step toward getting out of the house is a task that I do not want to perform. But that day, I performed those tasks, and I took a walk outside. The next day I did it again. Sometimes I waited until evening and my husband took a walk with me after dinner. One night, it was already 8:30, and I hadn’t walked yet. Ugh. But I took off my inside shoes and put on my outside shoes, and my husband and I took a walk. Not a long walk, just fifteen minutes. Just the same walk up the sidewalk to the teal house and back down to ours. I knew I wasn’t “getting in shape” for the trip, that these little walks were hardly making any difference at all, physically. This was a mental exercise more than a physical one. Could I take a walk outside, every day, for two weeks?

Yes. I could and I did. And I walked through airports. I walked in Colorado. Some days our activities barely counted as walks. We were there to visit hot springs, to sit in hot water. On those days when I was mostly sedentary, I was still outside. I was outside at some point, for some amount of time. When I returned home from my trip, I continued to take walks. Could I take a walk every day for thirty consecutive days?

Yes. I could and I did. And just so I didn’t immediately stop my streak, I took a walk on October 1st, too. Thirty-one consecutive days of activity outside of my house. I did feel proud of myself for achieving that, and I’m glad to know that I’m still able to, even now, even with my body in the state that it’s in. Honestly, I don’t know the last time that I walked every day for thirty-one days. Even during the years that I worked outside the home four days a week, I probably spent one of the other three days inside resting, reading, and online. 

I proved to myself that I can leave my house. I can go outside and move my body. Do I ever really want to? No. Nope. On beautiful days like today, I open the windows and I look outside. But do I want to make the effort to go outside? No. Nope.

Is it depression? Probably. Is it fatigue and chronic pain? Most definitely.

But I did do it, so I know that I can. I can make myself do things that I don’t want to do, because I know they are good for my physical and mental health even if I can’t feel it. But, certain things being good for my physical and mental health is not motivation enough to do them. 

So, why did I do it this time? I think having an end-date helps: every day for thirty days, not every day for the rest of my life. Putting no distance or time requirement on myself helped. Further, giving myself permission not to wear my AFOs also helped. I worked so hard to get ankle-foot-orthoses for both feet, and they do help a little with stability. So why wouldn’t I wear them? They stay inside my shoes. I put my foot in close two straps across my shins. That is literally two more actions per foot than putting on my other pair of outside shoes. (Those have custom inserts inside the shoe.) But somehow, it’s just enough additional effort that I don’t want to do it. I really dislike that I need to wear shoes inside. But my feet need good, firm support, no slippers or slip-ons allowed. So no matter what, I have to take off one pair and put on something else. It’s already double work. Well, unless I just wear my inside shoes out, which I do if I’m just going out onto the patio for a minute. So I gave myself permission to just wear my “regular” outside shoes, which are a little more comfortable, and a little faster than the AFO ones. I removed or lessened every possible barrier, and that left me with the task itself: go the #@$! outside and walk.

Inside shoes with Velcro. Outside options without and with AFOs.

There was no great transformation or realization. I do not now love going for walks. I do not find it any easier to do it after having met that goal. No “I walked every day for 30 days and this is what happened” before and after story. I want to like it. I want to  want to do it. I want there to be a transformation or realization. Alas, I am still exactly my same self.

But I did do it. And that is something.

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.

It’s Okay to See Disabled Bodies: Paralympics Paris 2024

danielleshanti

I’m quickly popping in because the sixteenth Paralympics began in Paris yesterday. Here’s a bit of history if anyone would like to know more.

I’ve never watched any of the Paralympics before. I do enjoy watching some events in the Olympics, both summer and winter, even though I don’t follow sports any other time of year. (Except that I’m a massive figure skating fan circa 1990s, but skating these days makes me sad, so…) Why have I never seen the Paralympics? Because the event is hardly advertised, promoted, celebrated, or aired on TV. Now we’ve got paid streaming services that actually cover it (Peacock), and the Paralympics has its own official YouTube channel, so there is some coverage available for free.

I also really, really love this “Yes, I Can” video for Rio 2016, and that’s when the Paralympics really got on my radar. It’s almost inspiration porn, but the amazing things that the people are doing, interspersed with daily tasks, are actually amazing, and it’s just a beautifully made music video!

This year, I’m trying to pay attention to the Paralympic Games while they’re happening, instead of watching a few clips after the fact. I think it’s akin to women’s sports. The media doesn’t think there’s interest, and therefore monetary value, in disabled sports, so we’ve got to watch and support and spread the word so that the Paralympics become something we celebrate the world over, just like the Olympics.

I watched the highlights of the Paris 2024 Opening Ceremony on youtube this morning. (The Games opened yesterday, 28 August. I was able to watch a 30 minute highlights video, which, when I went to link it just now, is not available in my country. So if you’re in the US and you want to support the Paralympics, I guess we need to shell out the eight bucks for Peacock.) As I said, it’s the first time I’ve ever seen more than a clip of the Paralympics. I loved what I saw. A vast, accessible stage where dancers danced, dancers using wheelchairs and crutches, able-bodied dancers interacting with disabled dancers. Darn right, it made me emotional to see all those performers center stage, cheered on and celebrated alongside disabled athletes. 

It made me realize–we should see this all the time. Seeing an inclusive array of bodies everywhere, because we exist everywhere, could be perfectly ordinary. Can you imagine that? I honestly cannot. I cannot imagine seeing an illustration in a children’s book of someone with crutches and not thinking, “Hey, look! Someone with a disability!” in surprise and delight. Even though it’s happening more and more, in ads, I still say, “Look! A wheelchair user! Good job, [insert whatever company here]!”

So, yes, more than once as I sat watching the highlights of all these beautiful performers and the athletes carrying their flags, I was flooded with emotion, emotion over what I was seeing, and over the vision I had of the world as it could be. And emotion that it’s taken this long for that vision of the world to come to me.

Then there were some clips of various speeches. Tony Estanguet, a French Olympic canoeist and the president of the organizing committee for Paris 2024, said in his speech, “When the sport starts, we will no longer see men and women with a disability, we will see you: we will see champions.”

Aw, nuts. Were there no sensitivity readers for this speech? I wish I could say this loud enough for everyone in the back to hear: When you say you don’t see disability, you are saying that there is something wrong with disability, that it shouldn’t be seen. People can be disabled AND be champions! That is, in fact, the whole point of the Paralympics! If you are not seeing our disabilities, then you are not seeing us. (“Hello. I’m so wonderful that I see you the way it makes ME comfortable to see you, rather than seeing you as you are.”) It’s so frustrating that there’s still so much ableism in this incredible event that’s supposed to celebrate these athletes and all they’ve worked for. And, yeah, there’s lots of internalized ableism in some of the athletes as well. Lots of “We can do anything we put our minds to” kind of talk. It’s okay not to be able to do everything! We are all allowed to be just as we are and need just as much help as we need.

Normalize disability. There is so much amazing diversity in our human existence! Normalize that disabled people exist in all sorts of ways and interact with abled-bodied people in all sorts of ways. It’s okay to see disabled bodies! In fact, it’s downright awesome!

How to Be a Functional Adult When Your Mind and Body Don’t Want To

danielleshanti

Hello, my name is Danielle, and I am a YouTube addict. I love watching people declutter and organize their closets, turning chaos into something functional and nice. I love watching people mow and trim overgrown yards and sidewalks, turning chaos into something functional and nice. I watch people restore furniture and renovate houses and make food, I watch the Vlogbrothers, I watch people with disabilities share their lives, I watch dance and music. And I do it all sitting down. Or lying down. My mind and body are at rest and there are stories and journeys unlimited to jump into and I could stay there in that cocoon forever and ever amen.

Sometimes I remind myself as I click on one more video that this is my one life. Is this how I want to spend it? Is this video enriching my life in any way beyond passing enjoyment? I know it’s time to close my laptop and do other things. But it’s so hard. I know it’s not just me. I know that it’s a worldwide cultural phenomenon, with the internet in our hands, our heads bent to our phones, scrolling and scrolling and scrolling. I’ve been very careful to not join Instagram or tiktok or whatever else is out there because Facebook and YouTube are already too much. They are almost magical places where we can create our own bubbles of people who love what we love and we can immediately find a site or a video on anything that piques our interest. This kind of internet was unfathomable to me in 2005.

I think about 2005 me sometimes, and not just because I was in my twenties and had more energy and less pain. In 2005, I walked from my apartment to the public library and I logged on to a computer to check my email. I checked my beloved message boards where fans of figure skating and Broadway musicals gathered. Then I logged off and checked out books. Paper ones. Or movies on disc, or CDs! That was the time of listening to every Beatles album and finally hearing Leonard Bernstein’s MASS. Oh, my heart. The way the internet and our lives have changed since then makes my head spin and my heart ache. The internet has been a tool for so much good, for connecting people and making political movements like #metoo and #BlackLivesMatter, and so many others, globally accessible. Accessibility is one of the greatest positives of the internet. I watched Joan Baez dance on her 80th birthday! I saw the original cast of Ragtime share their memories and the cast of The West Wing come together to play trivia and encourage people to vote. These moments brought me joy. 

But my daily consumption of YouTube and Facebook does not typically make my heart sing. 2005 me could not conceive of YouTube and Facebook. 2005 me was reading, journaling, listening to music, and going outside, for goodness’ sake. (And watching a lot of TV and movies, too. Let’s not be too rose-colored about the past.) 

The title of this post is utterly laughable because I don’t know how to be a functional adult when my mind and body don’t want to. We all know what we should do. Of course we know. I know that I should go for a walk and do my PT and eat less sugar and more vegetables and put my phone down and do deep breathing. I have tried to curb my internet addiction. The truth is, I do not want to give up Facebook and YouTube entirely because there is real value in them for me. 

I have tried no phones in bed, no screen time after 9pm, only allowing myself access on one or two days a week, or only after 5pm, or for only thirty minutes a day. All of these self-imposed limits work for a while and then I gradually let them slip away.

Now that I am legitimately middle-aged, only working a few hours a week, and finally back on SSDI (hooray!), I have the kind of time so many people dream of. Everyone out there who’s working full time and raising kids, they wish for some free time to work on labors of love or to rest and read.

But what am I doing with my one life? I am existing. I am tired. Sometimes I take a shower and sometimes I don’t. Some days I cook and do laundry and some days I don’t. Some days I read and listen to music. Some days I don’t. I am not alone in this, and my company isn’t only others with disabilities.

When did we become a society that makes half-serious jokes about earning a sticker for putting on pants? When did “adult” become a verb? Why does everything feel so hard? Not just for those of us with disabilities, but for so many?

I did not create this sticker. I found it here: https://bigmoods.com/products/i-put-on-pants-today-trophy-sticker

I don’t think social media is helping, with its ocean of “morning routines” and “night routines” and “how to be productive” videos. There is literally–and this is the correct use of the word–only one task I consistently complete every day of my life. I brush my teeth. That is it, the single task that is my daily routine. I can almost add one more thing to that list. Since adopting Maddie, I have fed her and scooped her litter box. Because she, through no choice of her own, is dependent on our care, and she needs and deserves food and water and pleasant conditions in which to carry out her bodily functions, I have met those needs out of love and respect for her. But I have not done these tasks every day. On days when I’ve been injured or my knees have been hurting, my husband has taken over. (We need to help out my body by raising the litter boxes off the floor, but we haven’t gotten there yet). 

Meeting the most basic of bodily needs, my own and my cat’s, seems to be what I am capable of. Will this ever get better, or continue to slowly get worse? Even when I successfully avoid endless scrolling, it doesn’t mean I have the energy to complete the tasks required in order for us to stay clothed, and fed, with a clean-enough body and a clean-enough home. 

It’s not that I feel I must be productive. Let’s continue to dispel the idea that one’s productivity is tied to their value as a person. It’s not productivity that I want, but to live a good life, to not feel that I’ve squandered precious time, to live with care and gratitude, to be present, and to nourish and love myself and others.

I love making lists. Yes, I am absolutely one of those people who will write something on the list that I have already completed, just so that I can cross it off. The items on the list might be as simple as taking my vitamins or journaling. Lists are not only for “chores,” but also for self-care. There are so many little things to remember to do every day, even things that I genuinely want to do, or to incorporate into my life, that I just don’t seem to be able to make stick.

My latest method has been the kanban board. This method of project management is not new; there are lots of versions out there, and it can be as simple or as complex as needed. Mine is simply three columns: To Do, Doing, Done. I found a magnetic whiteboard and ordered some magnetic dry-erase rectangles to use in place of sticky notes, and I put it up right next to my desk. The idea was to have the visual there for me, and to have an interactive component (moving the magnets across the columns).

I liked it for a while, but I’ve learned that it works well for some things and not for others. I put things that I want to become part of my everyday life in the To Do column: vitamins, PT, meditation, tapping. (I set up my environment so that I have the time and space to do them, and yet…) I added in other tasks as they came up, like laundry or vacuuming or making phone calls. Then, after the billionth time I kicked some of the clutter under my desk, I added “Hang art on the walls,” and “list XYZ on Buy Nothing.”  There are big and little, short- and long-term to dos, like taking old medication to the drop-box at the pharmacy and getting caught up with printing photos and putting them into albums. Or writing a blog post and updating a website. Soon the To Do column was full and daily goals were next to long-term, procrastinator-extraordinaire projects. I stopped moving the magnets over and went back to paper lists. I look at the board guiltily. I still have not updated my website. 

Having things that I theoretically want to do mixed with things I’m actively avoiding, well, that didn’t work. Or was it the smaller daily goals mixed with the big long-term projects that didn’t work for my brain? A week ago, I got fed up with myself wasting time on YouTube, as I sat right next to my kanban board that was reminding me that I still hadn’t done any stretching or meditating that day.

These aren’t all chores, I reminded myself. These are actions my body and my mind need, and I can’t expect to ever feel any different if I don’t at least try to be consistent with at least some of them. I needed this shift in my perspective. So I created something like a kanban board, but with self-care as its only focus. True tasks, different from self-care, will go on short-term and long-term paper lists somewhere else. I find pleasure in writing with a pencil on paper, and crossing items off lists, so I’m going to keep doing that.

I’d tell you that the picture below is the rough prototype, but I’ve never been into crafting, and I’m trying to let go of perfectionism, so here we have the new system, laid right atop the old one.

The three sections are Body, Mind, and Soul. I want to stretch and do breathing and tapping and meditation. I want to journal and listen to music and put my bare feet in the grass. But often I do none of these things. I’ve learned so many kinds of mindful breathing! Just do one. So I’m trying to see if I can get myself to do just one thing (or two?) for each part of myself each day. 

If I simultaneously take the pressure off myself to do all the things every day, and also provide the visual reminder–Why, yes it would be nice to do some journaling today–maybe I’ll be more likely to do some of the things, some of the time?

Furthermore, I have once again reinstated the “YouTube only on Fridays” rule, and the “For the love of sanity, don’t click on Facebook every hour of every day” rule. We’ll see how long it works this time. Scratch that, it sounds a bit self-defeating. What I mean is “Good job, me, for setting realistic goals, for switching things up, and for trying again.”

Trying again is all we’ve got really.

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.

June and July

danielleshanti

June was busy, and now we’re nearing the close of July already. Here’s a “quick” recap:

On June 13th I saw my rheumatologist for my biannual visit. He checked me for any signs of new autoimmune diseases and found none. I asked him about fibromyalgia, since the cervical and brain MRIs revealed no new information about burning forearms. (Well, the neurologist presumed small-fiber neuropathy and said that fibromyalgia isn’t her area.) 

My rheumatologist pressed on various places to see if I had tender points, asked me if I was depressed and said he didn’t think I was. I was surprised and bummed about cursory fibromyalgia assessment, because tender points pain isn’t used as the main measure anymore.

On June 17th, my husband and I went to Oregon to visit family and we saw The Princess Bride, under the sky, with a live orchestra at The Britt Festival. I highly recommend this experience if there’s one like it in your area. And by your area, I mean, it’s worth traveling to a neighboring state to experience this movie with a crowd of people who love it too.

On June 20th, I had my second upper endoscopy. My first one was in October 2020 at another hospital. Now that I have my own GI doctor, he wanted to see for himself what was going on in there and why my numbers aren’t coming down. I was very anxious and upset for my first one because they gave me this paper that went over the procedure and it stated that I might feel like I’m choking, and I didn’t really understand what the whole thing was going to be like. I got loaded with extra medication, was wheeled in, told to get on my side, and then I was waking up and someone was telling me it was over. This time, while still quite nervous, I wasn’t on the verge of panic. 

I was wheeled into the room and a very nice nurse (?) told me that it would be like taking a nap, I’d be going in and out, and I’d still be able to hear and follow directions. Okay, now that had me on the verge of panic. My doctor came in and checked in with me. I had to gargle some horrible stuff to numb my throat, “for thirty seconds or however long you can stand” that I gagged on when directed to swallow. Then medicine was going into my IV, and the nurse put this thing into my mouth that keeps my tongue out of the way and prevents me from biting the camera-tube. And also from swallowing very well. So I lay on my side, trying to breathe and swallow and not panic, and not knowing how I should feel that I didn’t remember this part from the first time. When was the camera-tube coming? Would I feel like I’m choking? Would I really hear and—then I was waking up and it was done. Geez. I feel like it would be better if they don’t tell you so much scary stuff because you don’t remember anything anyway. I don’t know whether I felt like I was choking or whether I could hear them and follow directions. It’s completely gone. Drugs are amazing and terrifying. Somehow I got dressed. Vaguely remember doing that.  My husband and a nurse took me to the elevator in a wheelchair and we had to wait for it a long time. I have absolutely zero memory of any of that. 

I was relieved it was over. The results showed almost no damage. But it turns out that your symptoms, your numbers, and the state of your intestines really don’t necessarily correlate. I find that so strange and maddening. Well, I’m an obvious example: high numbers, little damage. Nothing looked off about my throat either; I’d asked him to pay attention to that, if he could. This time I wasn’t sent home with color pictures or anything about mild chronic stomach inflammation or anything. I have a follow-up video visit next month.

On June 21st, I had my third osteomanipulation appointment. I still enjoy them, and she can tell a difference in my body, but I cannot. I don’t think having them once a month is very effective, and it’s really the stretches/exercises that she assigns that do anything. No surprises there.

Also in June, I did some work as a sensitivity reader for an ongoing project to update elementary reading material. I am really happy to get to do this kind of work. It’s a great feeling to know that my perspective is not only helpful, but valued. 

On July 1st, we moved! Across town. More on that in my next post.

On July 17th, I had an appointment with my PCP. I wanted to follow up with her about all these appointments and procedures: neurology, PMR, rheumatology, GI, etc. But really, I also wanted to ask for a prescription for an AFO for my left side. The one I got for the right does help a lot, and I was frustrated and mystified by that orthopedic doctor’s resistance to providing the same support for my weaker side. I wasn’t having the same pain on that side, so I understand that part of it. But now, now both my feet just hurt. Often and a lot. Did you know that arthritis can cause a burning sensation? I didn’t, until it occurred to me to look it up. Knowing that it’s probably “just” arthritis (along with whatever was originally going on on the right side) helps me just take it as it comes and not worry too much about, you know, feeling like I legitimately can’t walk sometimes.

I also talked to my doctor about my rheumatologist’s dismissal of possible fibromyalgia and depression, which are often linked. I told her about the two individual instances in the last four years where I felt markedly better, more awake/alive. Happy. Even though the chronic issues were still there. Sometimes you don’t know that you’re depressed until you catch a glimpse of another way of existing. We had talked about trying fibromyalgia medication before, after the gabapentin hadn’t done anything, so she was open to prescribing it.

Here’s what the NIH says about fibromyalgia. It very much feels like me, and yes, I do realize that these symptoms could also be from hundreds of other conditions.

The main symptoms of fibromyalgia are:

  • Chronic, widespread pain throughout the body or at multiple sites. Pain is often felt in the arms, legs, head, chest, abdomen, back, and buttocks. People often describe it as aching, burning, or throbbing.
  • Fatigue or an overwhelming feeling of being tired.
  • Trouble sleeping.

Other symptoms may include:

  • Muscle and joint stiffness.
  • Tenderness to touch.
  • Numbness or tingling in the arms and legs.
  • Problems with concentrating, thinking clearly, and memory (sometimes called “fibro fog”).
  • Heightened sensitivity to light, noise, odors, and temperature.
  • Digestive issues, such as bloating or constipation.

I also told my doctor candidly that I had been on SSDI for a number of years before my five-year stint of part-time work. That I hadn’t returned to my job two years ago, and applied to receive disability again, but was denied. She told me to reapply. I confirmed that it was legitimate to put fibromyalgia on the application, even though I hadn’t started the medication yet (which, if it helped, would help confirm the diagnosis). She agreed and said that I should also put arthritis and assumed small-fiber neuropathy. Along with cerebral palsy, of course. The first time I qualified for disability, I was relieved but also a little insulted. I felt I could work but wasn’t getting hired. Now, I feel that I actually do qualify, and I really hope the government agrees with me. 

So that is where I am these days. All the big, nerve-racking, (expensive), procedures are over, and I’m left with management and maintenance, and a bit of hope that a new medication might, maybe this time, help a little.

Neuro Follow-Up and Being Manipulated

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I recently had my neurology follow-up with Dr. X to discuss my cervical spine and brain MRIs.

She said my brain looks good and my labs look good. She said the mild disc bulges in my neck are indeed very mild and shouldn’t be causing pain. She does not want to order steroid injections for something so mild, and agree, even though I’ve had constant neck pain since June of 2016. Then she did a quick reassessment of my strength and reflexes and said they are the same (no surprise there; it’s been three months). 

The small lesion in my right brain could have been from any number of things (perhaps even CP), and we don’t have any earlier images to compare it to. It does not explain my burning forearms.

The only thing Dr. X thought it might be is small fiber neuropathy caused by celiac disease. The treatment is to manage the celiac disease through diet, which I’ve obviously already been trying to do since my diagnosis almost five years ago. I could have a skin biopsy done to confirm, but it wouldn’t change treatment, which is only symptom management. I could try gabapentin (didn’t help), physical therapy (didn’t help), or duloxetine (nope; gelatin). I could try over-the-counter lidocaine cream. Okay, sure. It’s a little frustrating to be given options I’ve already tried, but I guess I don’t expect my doctor to actually be familiar with my history. 

Johns Hopkins describes the symptoms of small fiber neuropathy as “pins-and-needles, pricks, tingling and numbness. Some patients may experience burning pain or coldness and electric shock-like brief painful sensations.” It doesn’t really sound like what I’m feeling except the burning. It’s more like a deep, painful ache that can feel sharp. Though I have had burning toes as well, since 2014, and small fiber neuropathy often begins in the feet and works its way up.  

Whatever it is, it doesn’t seem like there’s a whole lot more to do. No surprise there. 

Here’s the funny part. Dr. X asked to see me walk. I do not enjoy providing a walking sample in an exam room. There’s about three steps to the door from where I was sitting. But I got up and did it anyway, no trekking poles. As soon as I took two steps, she started saying, “Slow down.” Now, I cannot slow down, as that would take control that I do not possess. I thought she was saying slow down because I was already at the end of the room and she hadn’t had time to really see my gait. But then she said, “Be careful,” and she was up from her stool and taking my arm because she did not want me to fall. Now, English is not her first language, and I think culturally, we’ve got some big differences as well. But she’s a neurologist. The majority of patients in and out of that office were using some kind of mobility aid. Isn’t she familiar with CP gait patterns? Oy. 

When it was time for me to go, I got my poles and stood up, and there she was, trying to take my arm and telling me to be careful. And again, as I went through the door, telling me to be careful. Obviously I understand that this reaction is coming from a place of care. But. I am forty-two years old, and I have come to this exam room on my own using poles. Therefore, the other adult in the room should infer that I know how to handle myself to get safely back to the waiting area, even if I had a wheelchair and/or caregiver out there waiting for me! And she should also know that the words “be careful” have never, ever actually helped anyone, but that they do, in fact, convey loads of condescension. Goodness, thank you, doctor! That’s what I’ve been missing these forty-two years. I have never realized before that I should move with care. No one told me! But now that I know, I shall handle living in my own body much better. (I didn’t say any of that, of course.)

In other news, I’ve now had two osteopathic manipulation appointments at my local hospital. I got this referral by having an office visit with a new doctor when my regular PCP was out. It’s so nice when doctors try to help you without you asking for it. The appointment had nothing to do with CP or chronic pain, but I did mention those things. This new doctor gave me some new options, ones that I hadn’t known existed. My PCP has been my doctor since 2012 and has seen me for every new chronic pain that has come up, but she’s never suggested anything like this. As far as insurance coverage, osteopathic manipulation counts as a regular office visit and is part of my allotted physical therapy visits, unlike massage therapy, for example, which is not covered. In addition, I get a 40 minute appointment, which means at least 30 minutes of it is actually treatment, unlike with a PT session, which is 30 minutes total. 

The appointment is at the hospital, not at a physical therapy office, but the table inside the exam room is more like a PT table, with a real sheet over the crunchy paper strip.

I lie on my back and get mushed and pushed and pulled on. And I really like it. In the first session, the doctor told me the right side of my ribcage was compressed and that I should lie down flat with my right arm bent over my head to stretch it out. And I should also let my right leg relax outward when I’m lying down. Two positions to work on while lying down? That I can do. I was pretty sore afterward, but other than that, I didn’t notice any difference. 

During the second session, she worked a lot on my right hip, because that’s where a lot of my pain is. Then when she was checking my ribs she lifted my arm and said, “We’ve got to work on your forearms! When they’re tight, they pull your shoulders forward and affect your posture.” Just by touching my arm, she could feel an issue. Yes, they’re tight. Yes, I do try to stretch them. I’ve tried massage and moist heat, and taping and rolling. Nothing I do seems to have any effect. Just that first PT in June of 2020 succeeded in helping. The second PT did the same things, but it didn’t help, and neither did work with a myofascial release therapist. Hence the last three years of trying to figure out what’s going on with my forearms. Is the burning just my nervous system overreacting to extreme tightness? If so, why don’t the muscles let go even a little with stretching and/or other professional intervention? Maybe it’s not small fiber neuropathy at all. 

What if I got a full body, deep-tissue massage under general anesthesia? Doesn’t that sound like a fun experiment for my nervous system? I think it sounds like an excellent idea.  

Danielle Gets a Brain MRI: Brain MRI with Cerebral Palsy

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On the night of April 11th, I had my dreaded brain MRI. The day before, I woke up with a stomach already tense. On the day of, I tried to keep busy and also stay calm. We are having exceptionally beautiful, truly spring-like weather, so I reclined in a lounge chair outside and did a meditation, a yoga nidra, and a tapping session consecutively. 

Yoga nidra is relatively new to me. It’s like a compassionate body scan, which I love, but it includes having an intention in mind and is a little more in-depth. You listen to a calming voice telling you to notice the tip of your tongue, your teeth and gums, the inside of your right cheek, the inside of your left cheek…. All through the body, each toe and finger. Then hemispheres of the body and brain. It’s interesting and takes a lot of focus and concentration. Which is exactly the point, to be grounded in the present moment and in your body. I really recommend trying it; there are lots online, and they vary in length. Here’s one I like.

As the afternoon slid closer and closer to evening, I kept imagining going into the MRI machine with the coil over my face. I didn’t know how close it would be to my face, or how close the coil would be to touching the inside walls of the machine, and I was very anxious. I didn’t feel stomach-twisty nervous, but very quiet and subdued. I didn’t know if all my nervous-system-calming prep work had helped at all. 

When I’d gotten my c-spine MRI last month, the tech told me that I should use “the mobile unit” for the brain, because it’s newer and has more “bells and whistles.” I did indeed get scheduled for the mobile unit. I hoped that the bells and whistles included headphones with which I could choose music to listen to.

Walking into a nearly empty hospital at 7:30pm is weird. But nicer than walking into a crowded hospital. We got to the room to check in, and a sign outside instructed us to go downstairs. Did that. Then the nurse (?) came and took us back upstairs, through the first darkened room, past the sign outside it, and down the length of the entire hallway. There my husband sat while I was escorted through some doors and then through doors to the outside, where, in a parking lot two “mobile” MRI units sat. They had some very solid ramps leading up to them, and I assume they are no longer mobile. They are big metal boxes that remind me of blood donation vans, but way bigger.

In a room the size of a small shower stall, I had to get undressed (except socks and underwear) and put on paper shorts and a gown. The chair took up 85% of the space, and when I lifted one leg onto the other knee to remove shoes and pants, there was no longer any room to complete the maneuver. Fun.

Too soon, I was led past the tech area and into the room with the machine. This one was close enough to the floor that I could sit on the bed part/get myself onto it without needing a stepstool to be brought over. I explained that I have cerebral palsy and have very strong reflexes in response to loud noises. Weight on my legs helps. They didn’t have additional weight in the form of blankets. The nurse put the bolster under my calves, and the tech guy strapped my legs down. A little too tightly. Once he loosened it a bit, I figured it wasn’t as comfortable as a weighted blanket–type sensation, but that it would help overall. Earplugs in. Then he put cushioned blocks on either side of my head to hold it in place. And without a word, he placed the coil next. 

The coil was over my face, the emergency squeeze ball was in my hand, and I was heading into the tube. As far as I could tell from my vantage point, the face coil was similar to the one below, but without the little screen attached over it. 

I was so relieved not to feel panic welling up within. The coil was a manageable distance from my face. With gentle pressure on both sides of my head, and a warm blanket over me, moving into the tube I felt almost…cozy? If it hadn’t been for the upcoming prolonged and unpredictable loud noises, I would have felt just fine in there. Because of the nearness of the single bar up the middle of the coil, I had to close one eye or the other to have an unobstructed view of the inside of the machine, so this time, I felt calmer keeping my eyes closed. (In my previous experiences, when I closed my eyes, my mind raced more and I felt closer to panic.)

Just like getting through last month’s cervical spine MRI, I won’t say this experience was easy. But it was easier than last time and the time before that. I was surprised to be able to think, “I’m doing this and I am okay.” The noise was still too much, and felt neverending, and I did still have images of myself breaking free of the enforced stillness and getting out, but though my mind had those thoughts and impulses, I was able to resist them and breathe through it.

The cushioned blocks holding my head still really helped me feel more secure and calm, rather than restrained as one might imagine. I was able to relax into them rather than holding myself rigid as I would without them. If I ever have to have another MRI, no matter the body part, I think I will ask for them, if they can be used without the face coil. Maybe I should try sleeping with something like that. I’m not able to sleep on my back because I feel like I have to hold my head up, but switching sides throughout the night means I wake up each time.

I came out for the contrast injection, not allowed to move at all, and then went back in for three more pictures, about ten minutes. I only heard one break in the barrage of sound, so I thought I had one more picture to go when instead, the tech appeared in my peripheral vision and I was set free. I had survived. 

When I made it back into the building, I told my husband with surprise, a lot of relief, and a little pride, “That was my best one.” 

The next day, I felt happy. I had a bit more energy than usual, and I just felt better. Happy. All the pain was absolutely still there: throat, forearms, hip, back, neck and shoulders, but I had a bit of energy anyway. I was happy anyway. I was looking forward to taking a walk rather than positively forcing myself to go because I know I should. 

I thought, well if I could feel like this every day, then I could totally “accept and surrender” and live with the pain and still feel like I was living rather than existing. That’s what The Gupta Program’s goal is–if you can make it to that state, where your nervous system is feeling safe and good, then maybe it’ll stop sending all these unnecessary danger/pain signals. I don’t know what the change was, and it only lasted for that day. Was it the sheer relief of making it through that dreaded MRI? Did I manage to get my brain a boost of the feel-good chemicals? Maybe that boost is where my brain is supposed to be at, and I need to correct a chemical imbalance… It’s not the first time I’ve had that thought. I had a similar (but even more extreme) experience several years ago, where, for one day, I was a better version of myself. My brain felt clearer. I was happy. When I worked with a group of rowdy students, I was patient without having to make myself respond in a patient way. I realized with atonishment that the kid who usually tried my patience was not having a particularly good day; it was I who was having a good day. I understood that people who were able to be upbeat and energetic in the face of a classroom full of kids must feel like this most days. They operate at a higher level of aliveness that I have only glimpsed. 

So–what’s going on in my brain? Have I got lesions or whatever else the neurologist was looking for? Here are the results:

FINDINGS: 

Brain: No evidence of hemorrhage, mass, shift, or extra axial fluid collection. No restricted diffusion. The ventricles are normal in size and morphology. A focus of abnormal T2/FLAIR signal hyperintensity in the right periventricular white matter, with differential remote sequelae of periventricular leukomalacia, migraines, posttraumatic, or less likely inflammatory causes. Flow voids at the skull base are preserved. There is no abnormal enhancement. 

Bones and soft tissues: There is a reniform-shaped T2 hyperintense lesion located immediately posterior to the left parotid gland, measuring up to 8 mm and demonstrating restricted diffusion and enhancement, likely a benign lymph node.

The note from the doctor says the “small white matter lesion in right brain” is unlikely to cause my symptoms. It’s a nonspecific finding that could be “related to headache, prior injury, et al.” Dr. X does not mention anything about the thing that is “likely a benign lymph node.” (Looked it up and the parotid gland is a salivary gland just in front of the ear.) Dr. X seems unconcerned and I was asked to schedule a follow up, which is not available until September.

So, again, I am left with, well, you’ve got hyperreflexia that suggests things that we have now ruled out, as far as spinal compression or brain lesions. Okay then. No one’s saying it could be a CP thing that I just wasn’t aware of until now. (These are upper body reflexes, and officially my CP affects my lower body.) 

I’ve been through so many information-gathering appointments, without any revelations to show for it.

Such is life.