The Good, the Bad and The Ugly Facts about Adult CP

The good news is that neuroplasticity is life long and provides new hope for change in adults with cerebral palsy, as well as in children. In addition, there are many more treatments and technologies now available than when these adults were discharged from Pediatrics.

The bad news is that adults with cerebral palsy have had a lifetime to firmly wire in their abnormal habits. Each individual is a unique person made up of their early experiences and this identity for the adult with CP includes all their abnormal movement and speech habits. Further, since all learning is experiential, they have not experienced normal movements and most find it hard to even imagine moving differently. (See, Moving Freely and Independence for My Daughter)

The ugly news is that there is no organized way for adults with cerebral palsy to access and benefit from the techniques and therapies that are now available. Most pediatric hospitals and clinics have firm age guidelines that discharge affected individuals at age 18 or at most, 21 years. There are few if any adult physicians or surgeons who are willing to provide care for these individuals. And prior to President Obama’s health care plan, all would have been denied insurance coverage to pay for any such treatment or technology on the basis of pre-existing conditions. His new program has rewritten this part of the insurance companies’ practice. Soon there will be affordable healthcare for everyone who needs it and there will no longer be a “pre-existing condition” exclusion.

It is very hard to write this blog because I recognize the challenges facing adults with CP. At first glance it seems overwhelming. I recently gave a talk at The CP Group (www.thecpgroup.org) in Washington DC. It was an interesting group of adults with various forms of cerebral palsy. I would estimate that half of the individuals were in wheelchairs. Since that time, I have been really thinking about where to start when there are so many problems to be addressed. I came down to two starting points that I think would apply to most people. The first is motivation to change and the second is pain management.

How motivated are you to change? I picked up “The Wisdom and Teachings of Stephen R. Covey” yesterday. I collect quotes and this book was made for me. It is a memorial to him that contains some of his best sayings. (Buy on Amazon) Under the principle of choice, I came across this one.

“Each of us guards a gate of change that can be opened only from the inside.”

The first step to change is deciding that you are motivated to change. No one on the outside can do it for you. Change is difficult for many people. Staying where they are is less frightening than opening the “gate of change”. Even if they are not happy where they are, they have difficulty seeing themselves in a different reality. When I work with adults, this first step is often the hardest.

There are two techniques that I have learned that seem to help this process. The first is searching out some ”Change” role models. This site is a good starting point. Click here to scroll through and look at videos of change. Watch my TEDx talk to learn more about how brains recover. Search cerebral palsy on www.ted.com and you will find interesting talks by neuroscientists like Michael Merzenich and the debut of the British Paraorchestra.

Another excellent video to watch is an introduction to the actors of Actors Without Boundaries at http://www.youtube.com/watch?v=FfXGQK9vbpE. This organization was started by Christine Rouse, my best example of a change artist.

You could easily spend hours watching TED and TEDx videos that bring you new ideas and evidence of change. Just as children cannot understand the concept of moving freely until they are given a situation where they can move freely, it is hard to think about change unless you can imagine it. (Moving Freely)

The second technique is picking something to change that can show results…measurable change…in a relatively short time. Success is the greatest motivator. Musculosketal pain is one of the most common problems reported by adults with CP and it is generally under treated. (The Good, Bad & Ugly Facts about Growth & Recovery) It is hard to do any type of exercise program if you are hurting.

If you have pain, recognize that this is one of the secondary complications of CP. It can and should be treated. The first point is to figure out what hurts and when. Children often do not complain of pain until it is excruciating. The “regular” aches and pains that they experience daily are normal to them. As an adult, you have the advantage. Make a list of your pains. Start at the top with headaches and move down your body. Try to figure out the intensity of your pain for each site. Are there things that make it better and things that make it worse? Put it all down and then make an appointment with your doctor.

Now this is the important point. Pick one type of pain, e.g. headache or muscle spasms or sore hip that you want to deal with first. Doctors are not magicians and they work best when they have a clear question to work on. There are two great books you might want to read. “How Doctors Think” by Jerome Groopman and “The Empowered Patient” by Elizabeth Cohen (www.elizabethcohen.com). Both these authors give valuable tips and techniques to get the most out of your encounters with the healthcare world.

In many situations of multiple, chronic pain sites, a referral to a pain clinic can be very helpful. You are more likely to make it to a pain management clinic if you do a bit of work on your computer to find out what is available near where you live. Doctors and therapists in these clinics like to solve problems and they know more about pain than the majority of doctors and surgeons. So if your case is complex, go to the experts.

Next week, I will write about some of the things to consider about getting ready for exercise and some of the types of exercise and physical therapies that are available. The first goal will be to decrease fatigue and improve endurance. Register on this site or subscribe to the RSS feed to be sure to receive notification of new posts.

 


10 Responses to “The Good, the Bad and The Ugly Facts about Adult CP”
  1. Please put me on your registration list for new posts.

    Walking with the help of an overhead rail system and support vest has strengthened our son’s legs and increased his endurance. Other exercises with this support also are helping with a stronger trunk. Medicaid may pay for this machine by Human Care. But you need an assistant to help with the program. This has also reduced pain due to the activity of walking and different supported sitting positions where a button does the lifting,not the assistant. He also stands at least one hour a day in a stander. Sitting all day must be so painful and I fee terrible when he is stuck in his chair for a long time…. sometimes it just happens.

    In the past year we have had help through finally a wonderful mouth therapist in Denver and an excellent cranial sacral and cranial osteopathy practitioner in San Antonio.

    Change is hard work, so we use a bribe, from fruit to other stuff which works for our son whose great pleasures include eating. I have no guilt here. Adults without disabilities reward themselves daily with alcohol or desserts after a long day. Eventually the bribe is removed for an activity that becomes easier and rewards begin for other activities. BIG changes, no,,,,,, but a lot of meaningful small changes. A belief that he can get stronger and is in less pain and having more fun.

    It helps that our son has two wonderful assistants paid for through the CLASS Medicaid waiver program. I am now a 71 year old parent who works in my home office and is the assistant at night and Sunday. I could not follow through on his program without assistants. Just not humanly possible.

  2. Melissa says:

    As a 34 (almost 35) year old adult with CP, I want to know if my aging procesd will be similar to a normal person or will I have to be in a home by the time I’m 40? My aunt is an RN in Canada and told my mom that I will slowly deterioate to the point where I’m nothing more than a retard. My mom is a retired LPN who’s not heard this before nor have I. I have a child I don’t want thinking their mother’s a retard thst can’t do shit for herself. I have lived on my own since I was 21.

    • kpape says:

      Adults with CP or any other early neurologic injury or disease do tend to have a faster than normal “aging” loss of muscle strength and balance than a normally functioning adult. The good news is that much of this can be prevented and/or reversed by a good exercise program. The water program, which is available as a free download on the site is a great starting place. http://www.karenpapemd.com/index.php/basic-water-exercise-program/
      I think your aunt is incorrect.

    • Aimee Roberts says:

      My father who has CP will be 76 this Feburary. I assume he has a “mild” case in the fact that he has been able to walk since he was 5. He has mixture of Spastic Hemiplegia and dyskinetic CP. I remember him as always being active and be able to do everything everyone else did, just differently. He seems to have aged better than my mother. To me he seems to be aging like a normal adult. He has developed arthritis, high blood pressure, and he seems to lose his balance more and more each year, but for someone at his age, I would expect these things. CP is not degenerative. In my opinion you will age the same as you would if you didn’t have CP. You are just going to feel it more than someone else, which you’ve been dealing with your whole life already. As for your child thinking anything negative of you, my father is my hero. I’ve never met another person who works harder. He his my inspiration anytime I think I can’t do anything. He reminds me that I have no excuse to not do what I want to with my life. I’m sure you will serve as the same inspiration to your child.

  3. Dianne says:

    My sister is age 60 and was born with an ‘impression of c.p.’. She was hearing impaired and had surgery on both ears, eye surgery on both eyes, surgery on each side to release the cords near her collar bones and a slant board. That’s really all I remember. I was 9 when she was born. She grew up and c.p. was never mentioned. She lived a very normal life until 7/11/15 when, at age 59, she fell and broke her neck at c3/4. She had a fusion in her neck (from c.p.?) that snapped when she hit her head. No one knew it was there. It’s not a complete sever but she is a total care quad and is very slowly regaining movement. She had surgery the night she fell after lying alone in the house for 6 hrs. before she was found.

    She lives in Tucson and works out at a recovery gym where a former athlete has adapted equipment and uses an athletic recovery program to rehabilitate people with spinal cord injuries. Her husband mentioned to me that he sees others at this gym who are making better progress than my sister and seem to have less spasticity. That’s the first time it dawned on me that her early childhood c.p. could be impacting her recovery. Could this be a possibility?

    It’s hard enough to find the appropriate person to manage my sister’s recovery. It seems there are case managers for everything but spinal cord injuries. If she has to add c.p. into the mix at this stage of her life it will be even more difficult to find the right doc.

    Can you help me figure out where we go from here? Who does she need to see? What specialist? I thank you for any direction you can provide.

  4. Darla Shelton says:

    I am 57 years old living with CP since birth. I have been mobile without the need to a walking device from age 14 to 55. I hold a management position with a well respected HCM company as well as having my own business moving paper documents to electronic format. Orthopedic Surgery was the order of the day when I was a child, 7 in total by age 16 lost of casting and so on.. However PT along with training like an athlete in swimming and horse back riding gave me the most improvement. At age 40 along with my sports trainer I bicycled over 120 miles for charity. (this was an adventure of a lifetime).

    Now I am back to walking with McKinney Crutches pretty much full time. My mobility is definitely changing. In researching what can be done to maintain mobility I am not finding much information for adults. I would be interested in any information you may have that could assist me in finding a doctor that is a creative thinker that understands a middle aged widow is not going to be on the fast track for experimental surgery but has a history of dedicated hard work to maintain mobility. Thank you for your time.

    • Karen Pape says:

      Thank you for your email. You pose a tough question as there is a real need for medical and therapy professionals with an interest in cerebral palsy over the age of 18 years.I would look for an adult CP Clinic on line.If you Google Adult CP Clinic, there are choices and one may be near you. If not, you may be able to see a physiatrists near you. They are specialists in rehabilitative medicine and can be quite helpful. Another option would be to see a good sports physiotherapist or physician. Many of the issues you face as you age are similar to the issues faced by competitive athletes as they age. I hope this is of some help.

  5. Lori says:

    Hi. My 35 year old niece has CP and is in a wheelchair. She has been exhibiting aggressive behavior such as ripping her shirts , spitting, grinding her teeth, and biting. These behaviors have increased over the last few months.
    She is on meds for anxiety/ depression and recently started on progesterone. Behavior mods that we have tried do not work for long. She actually laughs after destroying her shirts.
    Any suggestions?

    • Karen Pape says:

      I would discuss these changes with her prescribing physician that is monitoring her medications. Some of it may be a side effect or she may need a different approach.