Do It Myself Blog – Glenda Watson Hyatt

Motivational Speaker

5 Insider Secrets to Living with My Cerebral Palsy

Filed under: Living with a disability — by at 6:07 pm on Thursday, April 1, 2010

Granted none of us are born with the manuals included. We stumble and fall until we find our way. However there are a few things that would have been extremely helpful to know from the beginning rather than needing to discover through trial and error; mainly, error in many cases.

Therefore, in hopes of helping young ones living with cerebral palsy and their loved ones who may be saying “But no one told us that!”, I’d like to share these five insider secrets to living with my cerebral palsy:

1. Telling me to relax is pointless. When my body hears the words “Just relax”, a request is being made of it; a request requiring effort, which has the opposite effect. Telling me to “breathe” has a similar effect; after all, it was breathing – or lack thereof – that put me in this predicament in the first place!

Over the years I’ve realized that distraction works much better. There’s nothing like tricking one’s own body into doing what you want!

2. Wearing socks to bed keeps my toes from twitching. With athetoid cerebral palsy, one body or another is in constant motion. There’s nothing more exasperating than trying to fall asleep when the body won’t be still. I typically tuck my right hand, one of the usual offenders, under the pillow to hold it still. And, wearing socks to bed keep my toes and feet happy and relatively still.

Of course, this all changes on hot summer nights when my energy is totally zapped. Then, less covering is better.

3. Wearing a scarf wards off the gaggy feeling. I’ve only discovered this in the last couple of years. My theory is when my neck is cold, even if there’s only a slight breeze, the muscles tighten making me feel like I’m going to gag. Don a cozy scarf and the gagginess disappears.

I wished I had known back in university when I headed out on brisk mornings for 8:30 classes. I thought the gaggy feeling was from eating breakfast way too early. Had I only known!

4. Goodbyes are torturous. Ever since I can remember, goodbyes have been difficult, leaving me inconsolable tears. I don’t know why my reaction was always disproportionate to the situation, which was embarrassing and often landed me in trouble for being over-sensitive. I only know I dread goodbyes; my stomach even knots up the day before when I know a major goodbye is looming. This is one of the very few things that I really dislike about myself.

Talking with others with cerebral palsy and moms of kids with cp, over-emotional appears fairly common. Perhaps the brain damage or brain injury has also affected the emotion center as well as the motor cortex and whatever else?

The bottom line is, unless our parting is short and sweet, be prepared for some waterworks. I’ve yet to find a way to trick my body this one.

5. Living with cerebral palsy is a continuous process of exploration. What I have done a thousand times before might totally mess up the next time. Alternatively, what was seemingly impossible before becomes doable with new technology, new insights or “Damn it, I’m going to find a way to do it!” Add aging to the mix and it’s exploring all over again. Cerebral palsy keeps life interesting!

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Comment by Suzie Cheel

April 1, 2010 @ 8:33 pm

I love what you have shared and you had me laughing. Thanks for who you be- you make the world a better place and i love that you are always challenging the “norm”


Comment by Emma

April 2, 2010 @ 6:11 am

That is so interesting, about the traumatic goodbyes. This is a major issue for my son. We try to make it as fast and painless as possible.
It’s something that some ‘professionals’ have tried to mske into a ‘problem’. We just view it as part of him. Hard to see him get so upset though. I’ve read this post to him, and we’ll talk about it, as I’m sure it will make him feel better.

Comment by Susan R

April 2, 2010 @ 6:54 am

Great informative post, most of which I had no clue about. Appreciate your willingness to discuss so others can have more insight.

Comment by Glenda

April 2, 2010 @ 5:49 pm

Suzie and Susan, thank you for your kind works. With supportive friends like you, you make it easier for me to share these kinds of insights.

Comment by Glenda

April 4, 2010 @ 12:15 am

Emma, I wish I could suggest a solution, but, so far, I haven’t found one yet. However, I’m trying to accept this is part of who I am and that’s okay to feel what I feel. In doing so, sometime I do feel a bit of relief and can delay the waterworks until after the person leaves. Other times, not so much. I’m curious to hear your son’s thoughts. Maybe knowing we aren’t alone in this will help a bit.

Comment by Ricky Buchanan

April 4, 2010 @ 2:38 am

I have several friends with cerebral palsy but had not understood about the “trying to relax is pointless” part. Thank you for teaching me!

Comment by pam

May 24, 2010 @ 11:50 am

I do the same thing.. analyising my body and needs and problem solving! it is such a releif to read your doing this too…

my cp is mild, but has gone generally ignorned my whole life… now, I am paying more attention… the physical stuff is doable, I have rocks I keep for my right hand to hold on to when it starts to get uncomfortable – but the emotional stuff never occured to me. YES! good byes and even ending conversations are hard for me.. and it makes me look unconfident.

I’m so glad to find your site and to find tha someone else is also thinking their way through CP.

Comment by Sam

September 12, 2010 @ 4:42 am

Thank you once Glenda for your insights. These tips have helped me further understand my 2 year old son with CP, especially the relax and goodbye parts…your insights have broadened my awareness on new ways to approach his challenges!

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