Cerebral Palsy: And Other Effects of my Brain Injury #AtoZChallenge

Welcome to day three in the #AtoZChallenge. I am feeling a little off today, as my support worker canceled our appointment tomorrow and my husband will be home from work late this evening. For this reason, I’m feeling a little unmotivated to write. I hope that forcing myself to write today’s A to Z post anyway will help me snap out of the bad mood. Today, I am sharing about a disability that I have had since infancy, but that I didn’t know much about till a few years ago.

Like I mentioned on Monday, my autism diagnosis got taken away in 2016, because my then psychologist thought my having had a brain bleed as a baby precludes an autism diagnosis. It doesn’t, but it did help me gain some new perspective on my issues. Could I possibly be suffering from the effects of neonatal brain injury?

I asked my parents, starting with the obvious. I have left-sided weakness, affecting both my arm and leg, which I assumed was due to the brain bleed. I had heard of cerebral palsy and had figured out I might have this. I asked my father, but he didn’t answer my question. Possibly, he wasn’t told by the doctors, because my mobility impairment is relatively mild.

I did see a rehabilitation physician and had regular physical therapy until I was around eight. I also needed a cast on my left foot because my achilles tendon was at risk of becoming too short. Later, at age fifteen, I was diagnosed with scoliosis. This isn’t so uncommon that it alone warrants another diagnosis. However, coupled with all the other issues, I put two and two together.

Cerebral palsy, for those who don’t know, is basically a mobility impairment due to a brain injury acquired in utero, at birth or in the first year of life.

I finally went to my GP in 2017 to ask him, again focusing on my mobility impairment. This, after all, is the defining characteristic of cerebral palsy. I was just told I had acquired brain injury.

Still, in late 2018, I joined the national CP charity in my country. When I went to their conference in November, all puzzle pieces fell in place. Not only were my symptoms – not just the walking difficulties – characteristic of CP, but I met people with milder walking difficulties than mine who had been diagnosed as having CP.

There are five different levels of CP, depending on gross motor functioning (ability to walk or otherwise move around). People in level 1 and 2 can walk independently, though those in level 2 require some handheld mobility aids for long distances or on uneven ground. I would probably score as level 1 or maybe 2, but this motor functioning assessment is appropriate for children and adolescents only. There are also several different types of CP, depending on which limbs are affected and how. I probably have spastic hemiplegia, meaning CP affects one side of my body only.

Currently, I am not looking for an official CP diagnosis. I probably had one as a child, so digging up my old records may reveal it, but I’m not in a position to do so at this point. I also wonder what benefit I could gain from this. The support groups for CP on Facebook allow me in based on the facts of my brain injury and resulting mobility impairment. Besides, like my GP said in 2017, a physical or occupational therapist treating me for my brain injury would have to take into account the major disability of my blindness. Maybe, should I ever go into long-term care for the blind, I’ll be able to afford support for this.

A diagnosis of cerebral palsy requires mobility impairments, but a brain injury can have other effects. At the CP conference, the first presentation I attended was on overload. The same cognitive and affective difficulties that people who acquire a brain injury later in life can endure, can affect those with neonatal brain injury. In that sense, my psychologist may’ve been correct that my emotional and cognitive impairmetns are due to that.

Gratitude List (January 18, 2019) #TToT

This week is truly not the best one and that’s a huge understatement. I felt a little lost early in the week. I tried to exercise in order to make myself feel better. This was somewhat of a success. Then yesterday I fell and suffered a small fracture in my left collarbone. Nonetheless, I am going to attempt a short gratitude list. As always, I’m linking up with #TToT.

1. Swimming on Tuesday. It was the first time in six weeks that I went swimming again. I was a little panicked at first, but it went well eventually.

2. My mother-in-law. On Wednesday, my support coordinator had to cancel her visit to me at the last minute, but thankfully, my mother-in-law could pick me up. I had fun eating with my in-laws and my MIL’s niece, who temporarily lives with them.

3. My support staff. My support coordinator was kind enough to call me back as soon as she could to explain why she had to cancel our appt. She offered to come by two times next week.

Also, like I said, I fell yesterday. I was very dizzy from the pain at first. Nonetheless, I thought little of it. After an hour though, I was still in a lot of pain, so decided to call the doctor’s office. His assistant advised me to come see the doctor, but the GP surgery is in the next town, so I needed transportation. My mother-in-law couldn’t leave home and advised me to call a taxi. I didn’t know how to do that, so called my support worker, who jumped in the car and drove to me. She went to the doctor with me.

4. Painkillers. It turned out I had a small collarbone fracture. It wasn’t so bad that I needed a sling or whatever, but the doctor did give me strong painkillers. This was a little hard to figure out, since I take a lot of other medications with which pain meds might interact. I just took my third dose of the pain medicine about two hours ago, since I can only take it twice a day. I’m still in some pain, but it is bearable if I don’t put too much pressure on my arm. This does mean typing with my left hand for a long while, such as typing up this blog post, is a struggle.

5. Candy. I treated myself to candy today. I ate it all already. We also had French fries again. Now I am stuffed. However, it felt good indulging into some comfort food.

6. Reading. I was very much into reading some fiction again early this week. I usually read non-fiction, but enjoy young adult fiction at times. I had started reading the book I finished this week already a few months ago, but somehow moved through it quickly now. It is called And She Was by Jessica Verdi. I have made a start to a review, which I will publish soon.

What have you been grateful for?