Why Aging With Cerebral Palsy Is a Journey Into the Unknown

As 2018 dawned, I embraced the New Year with excitement and anticipation. I worked hard at my business, my marriage and mitigating the effects of aging with cerebral palsy. I battled against the chronic fatigue, chronic severe pain and brain fog. Even with all that, I remained as active as possible, walking with my four-wheeled walker and exercising on my stationery recumbent bike.

Then the end of January arrived, and I found myself suddenly in complete rigid spasm in both my legs and back. I could not walk and I could not move my legs. An ambulance ride to the hospital ended my 25-year stint of not being an inpatient. During that admission, my rehabilitation physiatrist, who specializes in spasticity, said it occurred because we had stopped my Botox treatments four months previously.  So she did those injections and also cortisone injections into both knees, and I waited for the Botox to take full effect. I was on a rehab/reactivation unit until I slowly got my legs back under me and walked out of the hospital (with my walker) 19 days after I arrived.  I was relieved that we had figured out the cause, and I returned home.

For the next nine months, I worked hard at building strength and tried to regain muscle. I pedaled my recumbent bike and slowly increased up to 20 minutes a day.  I switched to a modified Keto diet and began to see the benefits of that over four months.

I also turned 50 this year. It was bittersweet, as on one hand, I could not figure out how that was possible, and on the other hand, I felt as though I had already lived a lifetime. I was once again working hard in every area of my life, despite recurring back spasms and the ever present chronic pain.  I also began experiencing periods of Raynaud’s syndrome, shadow vision and issues with my bladder (stress incontinence and incredible urgency).  I was not impressed, but having no family doctor, I just made the best of it and carried on.

Then November 17 arrived and so did my second episode of spastic paralysis. This time it was much worse and I spent 29 days in hospital.  The last 13 days, I was finally on the neurological rehabilitation unit and working hard with physical therapists to try and get my legs under me again.

On that unit, I met my roommate, who is four years older but experiencing the exact same symptoms. This was her second admission for spastic paralysis this year as well.  We both felt relieved that we were not alone and it was not in our heads, as many doctors suggested. So we set out together to get answers. We made a list of our similarities and differences (she has mild cerebral palsy and hemiplegia, while I have moderate cerebral palsy and diplegia). Other than that, our list of symptoms was almost identical, as was the onset of these episodes of paralysis.

The other really odd thing was that my second admission had nothing to do with being late for my Botox treatments.  In fact, I was admitted 2 weeks before my Botox was due.

We asked questions of any and every doctor that darkened our doorway. We expected tests to be ordered and someone to take a keen interest in the anomalies we brought forward, but those expectations proved to be unrealistic. The hospitalist doctors only wanted to deal with the immediate symptoms not related to our CP and our rehab physiatrist only wanted to inject Botox (into me) and cortisone, which she did.  Ever time we pressed for answers, we were told “you have CP and are getting older, this is what it’s like.”  Then the doctor would make a hasty retreat.

Finally we were discharged early due to all our hospitals being at “critical overflow” levels and the head of our Health Authority mandating that all “medically stable” patients be discharged.

So now I am at home, only 60 percent recovered. I do not accept this as my new normal and I will continue to pursue answers. The lack of research regarding adults with cerebral palsy and aging has resulted in the position I find myself in now. I do not want round three of spastic paralysis, but I do not know what is causing it so I cannot take measures to prevent it.

The one strong thing I do have is my ability to self-advocate.  I refuse to be silenced and to just “live with” these debilitating symptoms.  Something is wrong.  It may not even be CP related: I have so many questions about autoimmune disorders and trying to either eliminate or confirm their presence.  I cannot do that without doctors ordering more tests, and so I am caught in the unknown, grey areas of aging with cerebral palsy. Even though there are 17 million people on this planet living with cerebral palsy, it remains the largest disability group with far too little funding and research.  I’d love to know the reasons why that is, but when I ask, all I get back is silence.

Amidst this emotional and physical roller coaster ride, I have hit the stages of grief yet again. I have cried more tears in the last month than in the last decade. I have felt enraged at the apathy of the medical system. I may or may not be in denial as to where my “normal” is; only time will reveal if I must make yet another shift and accept using my wheelchair more than my walker, but I will do all I can to get back on my feet as much as possible.

This I do know — I am not giving up. I will find the answers I am seeking, and if I have to play hard ball and write emails to government representatives or take my story to the media, I will.

Adults with cerebral palsy deserve to have competent and knowledgeable medical care, instead of being kicked to the curb with their concerns unheard and untreated.  Our lives matter and so I press onwards, not just for myself but for those in the younger generations living with CP.