CP and the Lifespan

 

If you are an adult with CP, or plan to become one, there are three things you should understand. First, most of the medical professional isn’t really sure what to expect of you. The CP population is increasing and aging rapidly without the benefit of experience or documentation. The owner’s manual for your body only covers the first 21 years. Just consider yourself a participant in a life-long research project.

Second, it is up to you to take care of yourself. Yes, you will age like everyone else. Your body will deteriorate. But, if your “normal” isn’t normal anymore, see a CP specialist. You are susceptible to many things your average well meaning medical practitioner is unaware of. And you can exercise and eat right. Yes, even you.

Third, there really are Doctors and a whole range of sports and allied health professionals that care about adults with CP. Okay, not many, but more than there were ten years ago and not as many as there will be in ten more years. They are hard to find which is the reason for this site. I’m just trying to save you some effort. There may be a whole lot more information out there, here’s my experience as I find it.

This information is subjective and anecdotal. It is provided based on the personal experience and interpretation of living with Cerebral Palsy. My name is not important, just that I have experiences to share to help others. In 2011 I am 47 and keenly aware things could be different.

My list of regrets is a small pittance compared to what I am thankful for. Still, I am writing this because I know my life could be better and I want young adults and middle-aged adults with Cerebral Palsy to hear my story and glean from it. Somewhere in the journey the medical profession pre-maturely discharged me.

I’m like many singles in the Boston area – graduated high school at 18, finished a BA in English at 22, took a year to discover I needed a better degree and completed a Master’s degree in Social Work at 25. I paid my dues to the workforce with two entry level professional jobs until hired by a State Agency in 1994. I drive 95 miles a day round trip in horrendous traffic. I own my home with a roommate (just happens to be my mother) and pay all my own bills. I should lose 15 pounds and am sleep deprived most of the time.

I don’t feel sorry for myself, but, I grow increasingly irritated. God has been extremely gracious towards me and given me more than I could ever deserve. Society affords me some degree of independence and opportunity. Still, medicine and (more likely) the insurance industry could have done more for me. I can’t run, skip or jump. Last year I couldn’t even walk and chew bubble gum at the same time. Somewhere between the age of 21 and 46 I got worse and nobody noticed or cared. In my opinion, (non-institutionalized) individuals with CP over the age of 21 need to understand they are responsible for maintaining their level of functioning – nobody else is going to do it for them. And, not only do you have to deal with the normal aging demise, you’ll have to distinguish how your CP is affecting the process.

Early Years

Only the first 18 years of my life were unusual. Everything started out great; after a normal pregnancy I was hatched on Easter Sunday. Everything was fine. Eight weeks later, within 24 hours of my first DPT vaccine(see ¹)  I had suffered a reaction resulting in permanent brain damage. (This was the first solid indication God wanted me to stay on this planet – Mom just happen to check on the baby when she did and there was a nurse in the park near enough to resuscitate me.) Soon it became evident I wasn’t achieving milestones like rolling over and crawling.

So, the logical thing to do was take me to Children’s Hospital in Boston. Mom was not happy with the intervention or progress I made as a result. Surely, more could be done.

Unfortunately, we don’t have good records or journals of all my intervention. Somewhere around age two or three Mom saw an article about cutting edge treatment for children with Neurological impairments. We trekked to the Institute in Media PA. Upon initial interview the doctor (I believe this was Dr. Eugene Spitz) said to my Mother “Yes, I believe she is salvageable.” Not the ideal way to describe your precious baby, on the other hand there was immense hope in that word. We embarked on the Doman-Delacato Patterning technique. If you have an interest, read the entire Wikipedia entry for this topic. Some swear by it, others swear at it. We swear by it and firmly believe I made exceptional gains with the program. I can remember having my mouth packed with peanut butter and many other un-conventional techniques that could be misconstrued as child abuse (i.e. using a cattle prodder.) But I stopped drooling. And I walk and talk and live a full life and am independent in all ADLs. Doctors today tell us I would have made the gains regardless of the intervention. We think otherwise. At the very least the patterning process moved my body enough so I could develop muscles and not contractures. The actual patterning involved four or five people at a time moving me in rhythm on a table. This in itself is a huge burden on the family while also being a huge blessing. I had a team of many, many, wonderful people in my community who cared enough to transform my life on a daily basis. I could never repay that debt of gratitude.

Founded in 1955, the Institutes for The Achievement of Human Potential (IAHP, also known as "The Institutes") is located in a suburb of northwest Philadelphia, Pennsylvania. The founder, Glenn Doman (a physical therapist), together with Carl Delacato (an educational psychologist), developed an approach to treating children with brain injury. The program for "brain-injured" children includes:

(The above is taken from Understanding Mental Retardation, page 185-186.)^[17]  The program is designed to be used by a parent at home. Patterning is perhaps the key technique.

Read the entire Wiki entry at: The Institutes for the Achievement of Human Potential. (2011, June 13). In Wikipedia, The Free Encyclopedia. Retrieved 13:32, July 12, 2011, from http://en.wikipedia.org/w/index.php?title=The_Institutes_for_the_Achievement_of_Human_Potential&oldid=434068624

Once my brain started to work I entered school at the normal juncture and received little special needs intervention. (Mostly because that term and field didn’t even exist then. I could have benefitted from it.) Life went along well enough (I could ambulate without assistance) until at the age of 12 Mom read another article about a Brain Pacemaker to reduce spasticity. So, in 1976, Dr. Ross Davis of Miami, Florida inserted an experimental Neurostimulator in me. It really didn’t work for me. We don’t regret trying it though and Dr. Davis is a real pioneer in this field. It wasn’t a bad thing.

In my teenage years we returned to Boston for traditional Orthopedic surgical intervention with the expert Dr. Henry Banks. I’ve had heel cord and adductor lengthening and my left foot fused. This helped also and I don’t regret the intervention.

Wouldn’t it make sense that if I needed all that in 18 years there’s a pretty good chance I’ll need even more help as I age? I’ve been through a lot in the past year. On the one hand I think God needed to regain my attention towards Him. On the other hand perhaps He will use me to improve the lives of others.

The Aftermath

I use a quad cane or rollator to ambulate. In college, I was able to walk around an entire quad without a cane. I also participated in mountain climbing – carrying 60 pounds on my back over rough trails. I’d have a better shot of launching myself to Mars than consider either of those activities 25 years later. In my mid 20’s I became a gym rat and was in excellent shape. Thin, limber and ripped (still using the quad cane). Granted, those are the prime years for everyone. Around age 30 I was full time into a grueling commute and job. Exercise was not a priority nor did I feel it was any more of a concern for me than anyone else. So, by 40, when I’m overweight and out of shape I feel like most of my colleagues. Except, they don’t fall over on a regular basis. They can walk, talk, and chew bubble gum simultaneously. Me, only one activity at a time. I start to withdraw from going out with friends. Working out becomes more of an effort than I can muster. And I’m really not a happy camper, having a real pity party for myself.

This is where the system failed me. When the Orthopedic specialist discharged me at age 21 there was no transition plan to get through the next 60 years. I understand CP and the lifespan isn’t a hot topic, but it must become one. I went to a local Orthopedic doctor for about 10 years for a specific problem with my elbow and a general complaint of being out of shape an needing PT. He was a compassionate man and he’d look at me and simply shake his said and say “You know, I can’t really fix you.” Of course I know that and it makes sense. Turns out he could have fixed me and should have. Between the internet and Divine intervention I learned of a rare doctor in Boston holding a clinic for adults with CP. My first time with him he took an hour to listen to me and my concerns. At the end of the hour he said “when your normal isn’t working, something’s wrong. It wasn’t just old age. He had a suspicion I had Cervical Stenosis and he was exactly right. My spinal cord had so much pressure on it messages from my brain were no longer flowing well enough for proper functioning. The imaging was so alarming a Neurosurgeon saw me between morning and afternoon surgery to hasten the process. Eight screws and two rods later I feel much better and am functioning much better, however, I have permanent damage and have lost certain capacities forever.

If I didn’t have CP and went to the general orthopedic specialist complaining of poor balance and general decline he would have done some basic testing. Cervical Stenosis is fairly common and doesn’t always cause pain (I had no neck pain.) But, because I have CP, my doctor felt it was par for the course and didn’t look for a reason.  Dr. Frankel though knew what to look for and prescribed resolution to a life threatening problem. (Please note stenosis is a common problem for ambulatory adults with CP.)

The medical profession is starting to address the lifespan of individuals with CP. There are more of us, we’re living longer and we are more likely to be living high quality lives due to great strides in early intervention. This is not the blame game. This is my chance to say after the first 21 years the individual with CP needs to be followed by an adult specialist and will benefit from life-long treatment. And, to add to the list of perks of having CP, the individual has to be extra involved and vigilant in maintaining their own level of functioning.

Here is a list of Doctors familiar with CP. My guy isn’t on this list, so we know there are more professionals available than what is apparent. As a last resort, contact your local Specialty Rehabilitation Hospital, the one that treats stroke and spinal cord injuries, chances are they have a Physiatrist on staff that can assist you.

1…severe problems closely following DPT immunization happen very rarely. These include a serious allergic reaction, prolonged seizures, a decrease in consciousness, lasting brain disease, or death.^{[citation needed]} A study published in the journal Pediatrics in 2009 concluded that the largest risk among unvaccinated children is the disease the vaccination is designed to protect against.^[1]

British research in the 1980s into whole-cell DTP,^[2] which is now rarely available in developed countries, suggested that such severe neurologic events occur after approximately 1 in 140,000 doses of the DPT vaccine (0.0007%). Most of the reactions to whole-cell DPT injection are thought to be from the pertussis component.

In 1994, the Institute of Medicine of the US National Academy of Sciences published a report stating that if the first symptoms of neurological damage occurred within the first seven days following vaccination with whole-cell pertussis vaccine, the evidence was compatible with the possibility that it could be the cause of permanent brain damage in otherwise apparently healthy children. It continued by stating. DTP vaccination has different pros & cons depending on the nature, place, and surrounding.

This serious acute neurologic response to whole-cell DPT is a rare event. The estimated excess risk ranged from 0 to 10.5 per million immunizations (IOM, 1991). The committee stresses that this is not the strongest statement regarding causality; the evidence does not "establish" or "prove" a causal relation....

The evidence remains insufficient to indicate the presence or absence of a causal relation between DPT and chronic nervous system dysfunction under any other circumstances. That is, because the NCES is the only systematic study of chronic nervous system dysfunctions after DPT, the committee can only comment on the causal relation between DPT and those chronic nervous system dysfunctions under the conditions studied by the NCES. In particular, the chronic dysfunctions associated with DPT followed a serious acute neurologic illness that occurred in children within 7 days after receiving DPT.^[3]

DPT vaccine. (2011, May 31). In Wikipedia, The Free Encyclopedia. Retrieved 17:38, June 15, 2011, from http://en.wikipedia.org/w/index.php?title=DPT_vaccine&oldid=431834406

 

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