HealthBoards (
-   Cerebral Palsy (
-   -   cp symptoms increasing with age (

jimslade 01-11-2005 05:08 PM

cp symptoms increasing with age
I am new to this board so forgive me if this is a topic that has been thoroughly explored in the past. I am in my early thirties, with what I will term a "mild" case of cp. (I am ambulatory, gainfully employeed, and I do not require any assistance.) My primary symptoms are spasticity, muscle aches, occasional pain & discomfort, and an affected gait. I am on my first (less than a year since implanted) baclofen pump.

As the title of this post suggests, I seem to be experiencing a worsening of symptoms (increased spasticity, intermittent muscle weakness). My understanding of cp is that it is a "non-progressive" condition. Put differently, my brain won't become more "injured" unless I suffer an additional form of brain trauma (head injury, stroke, etc). Worsening symptoms, on the other hand, seem to be a different matter. I've not seen anything that would indicate that my symptoms *won't* increase as I age. I've always expected that having cp would cause increased "wear-and-tear" on my body as compared to the general population.

Since I've always understood cp to be a "static" condition these increased symptoms are a bit disconcerning. I wonder if this distinction is a bit too nuanced for a majority of physicians.

As a related statement, I am none too pleased that there seems to be a lot less information regarding adults with cp than there is regarding children with cp. It seems to me - and I hope I am not being too cynical - that the profit motive for treating adults with cp is less since the level of advocacy is much less. To give an example: I had a neurologist tell me that he was "oh so sorry" to inform me that he could do no more for me than to treat me with oral antispasmodic drugs. Intrathecal Baclofen was then an approved treatment. Botox injections (which I've since received) were in widespread use. At the time I was not aware of either treatment.

Self advocacy has led me to the more involved treatment I am currently receiving. I am exceedingly fortunate (and also exceedingly grateful) that Big Insurance has not been a gatekeeping hindrance towards receiving the best and most appropriate treatment available to me.

I will see my neurologist in one week, and I'd love to be armed with some feedback going into that appointment. Thanks!

musicmaker650 01-11-2005 06:23 PM

Re: cp symptoms increasing with age

you folks that insist on using the word "mild" when you describe your CP will soon learn that the answer to "will CP worsen with age?" is YES, not from CP itself but from the wear and tear on your muscles, bones, joints and nerves because of the way your body has adapted to CP. The more you or anyone else hurts, the less they will do. This worsens your physical fitness.

You MUST keep active! I saw my doctor today. I have some new meds for pain and stiffness. I will see an orthopedic sugeon on Friday. I need to get my left big toe repaired. I have a bunion once again. It was repaired 20 years ago... I am 54

"(I am ambulatory, gainfully employeed, and I do not require any assistance.)" This described me too, without using the term "mild" I do not require the use of a baclofen pump. Does this make my CP milder than jimslade? Heck NO. See what I mean about using the word "mild"?

JellyRJFan 01-11-2005 06:51 PM

Re: cp symptoms increasing with age
Jimslade, welcome to the board!

musicmaker is correct, and you are also right about the lack of information regarding adults with CP. I am 19 years old, but already doors are beginning to close for me. I just got denied for a gait analysis (which I have had covered by insurance before), which is very important because I'm trying to get Botox, but it turns out I might need femur rotation. I have no doubt they would have approved this if I were 9 instead of 19.

jimslade 01-11-2005 07:53 PM

Re: cp symptoms increasing with age
Thank you for welcoming me, JellyRJFan! I am very sorry you are experiencing such difficulties trying to receive botox treatment. I am very lucky in that my health coverage will approve virtually any treatment without the need for referrals and/or diagnostic tests, and will cover pratically the entire cost of surgery, drug treatment, and therapy. I paid less than $500 out of pocket for my baclofen pump, including the surgery and hospital stay. I hope you are still able to receive botox treatment. Botox helped me.

Perhaps it would be more helpful, musicmaker, for me to be a bit more descriptive about my case. I have spastic diplegia cp. On days with less tone I walk with just a slight limp that some do not even notice. On other days my gait is more noticable. My hamstrings are the tightest area on my body, and my lower back (I have lordosis) is the weakest, although other portions of my body have increased and decreased tone.

JellyRJFan 01-11-2005 08:37 PM

Re: cp symptoms increasing with age
Jimslade, I have lordosis as well. Have you found any exercises or treatments to help you deal with it?

musicmaker650 01-11-2005 08:47 PM

Re: cp symptoms increasing with age
Welcome jimslade,
with your added clarification, we are even closer in our type of CP. I have had many surgeries, one of witch was a Hamstring lengthening at the age of 9. My grandfather was wealthy so he paid for my 11 muscle transplants or relocations. It was because of these experimental surgeries that I am as stable as I am today. All my spastisity was "released" by the nature of these procedures. I traded spastisity for "reduced feeling" and very little control of my feet and toes. My balance sucks and I walk using 2 canes. I have walked this way for 43 years. I also have lordosis, and because I am older 54, I have arthritic aches and pains in my hands, knees, lower back and shoulders. A drug called Diclofenac keeps these pains manageable. I try to keep active. A thing that's difficult to do in -10 degrees. You do have to move fast in -10

Strawberry1 01-12-2005 12:13 PM

Re: cp symptoms increasing with age
You MUST keep active! [/QUOTE]

Yes. And another MUST is maintaining normal weight. Extra weight is always a burden for your lower limbs.

I'm a couple of months shy of 34. I haven't noticed anything dramatic in my symptoms, but I'm probably slightly sleep-deprived all the time and that's not good (I'm a bit stiff and I get startled more easily nowadays even if I don't have an actual startle reflex).
I have right-side hemiplegia.

musicmaker650 01-12-2005 12:50 PM

Re: cp symptoms increasing with age
Hello Strawberry1,
when I say active, I mean to do something physical above your normal daily routine, like stretching for 5 minutes more, walking a little more, standing a little more... You don't have to 'kill" yourself.

I've always been able to sleep pretty well for 8 hours a night. If I get less than 6, my ability to walk gets worse and I have more aches and pains. I don't have a startle reflex either, but I tend to "jump" more when I am really tired

jimslade 01-13-2005 04:57 AM

Re: cp symptoms increasing with age

My physical therapist has given me a multitude of exercises, two of which specifically address strengthening the lumbar region. The first, and probably the easiest to do (at least the easiest for me), is to lie on my back with my knees up. I then push my pelvis forward, so as to flatten my lower back, holding that position for about 5 to 10 seconds, and doing two sets of ten reps. My therapist has me place my hand under my lower back so as to "feel" when I push down my lower back.

The second, and, for me, the trickier exercise, involves lying on my stomach. My therapist has me put a pillow under my pelvis to make this one easier for me. Next, I push my pelvis forward, holding it there for 5 to ten seconds, while raising one leg. I do the same again with the other leg, repeating for several reps of ten.

My therapist has me envision what my back should look like if it were perfetly straight, and then use that as my reference point when doing both exercises. I hope these help.

jimslade 01-13-2005 05:20 AM

Re: cp symptoms increasing with age

Wow! 11 surgeries? I have had one lengthening of my right heel cord. It certainly has helped, but I feel it has caused some of the atrophy of my right calf muscle. That, in turn, helps add to my limp. Everything's a trade off. Minus 10 is very cold. I've only been in weather that cold a couple of times. Having it seem as if your breath itself was freezing was an interesting sensation. It has been cool and damp where I live, neither of which help. Sleep deprivation, as strawberry was saying, also doesn't help. I'm going to talk with my doctor about reprogramming my baclofen pump to kick up a notch during the night. I've been waking up stiffer, making it uncomfortable to stand for even brief periods while I'm getting ready for the day.

MichelleAnne18 01-19-2005 02:56 PM

Re: cp symptoms increasing with age
I have had more problems occuring as I "age" (I'm 20), but that's mainly because I did not have most issues taken care of as a child.

I also have "mild CP". I have a lot of joint problems coming from a bad gait. I have seen like 10 Orthopedic surgerons that havent done a heck of a lot, but I just nwo have found one who wants to help.

NJenn 01-19-2005 09:36 PM

Re: cp symptoms increasing with age
I am 25 with spastic diplegia. I am a patient again for the first time in 10 years due to worsening of my CP with age. I refuse term myself as mild, moderate etc. I walk for short distances unaided, longer distances with crutches, and I have no qualms about using my wheelchair whenever I darn well please! I agree wholeheartedly with musicmaker650 on this issue of CP classification. These are highly subjective terms with little to no validity. I know lots of adults with CP as a result of my attendance at a conference this summer specifically for adults with CP. We talked a lot and shared "war stories", and it was a great way to build new connections. As mainstreamed children we are taught that having a successful life with a disability means that we must deny that disability and carry on no matter what the physical toll on our bodies. Thus, we've become a population of aging, but sucessful, adults who have no idea how to advocate effectively individually or as a group, but do know a lot about denial of disability. It's the old "I can do ANYTHING even though I'm disabled" syndrome. Ok, end of rant-- just my two cents.

For what it's worth, here are some things that have helped me deal with CP into adulthood, I'm not advocating this approach for anyone but myself, but maybe what I have to say will be helpful to some:

1. I ditched the orthopedic surgeon and found a physiatrist that is committed to my whole body, holistic care-- he doesn't want to hack away at my legs and that's fine with me.

2. I reevaluated my mobility. As a child and teen, I spent 80% of my time on my feet, and the other 20% using a chair. I'm now at about 70/30 chair/crutches. I get my job done faster and more efficiently during the day and I'm not utterly exhausted in the evening. There's no shame in getting a chair if you think you need one.

3. That being said, I move everyday. I swim laps 6 days a week, and stretch everyday. Everyday. I also supplement this with upper body weight training to keep my less affected upper body in the best shape possible. Gyms and pools are places that people with disabilities need to utilize to whatever extent we can. We can't kid ourselves that we can't exercise. Regardless of your functional level, any bit of exercise is good for you!

4. I keep my weight low in addition to exercise. As less mobile people we are more at risk for cardiovascular events. I've made the decision that I will control those aspects of my health that I can, since CP has left me with a sizable amount of factors that I can't control. I can reduce my risk for heart attack, stroke, diabetes, and a whole host of other chronic conditons though diet and exercise. CP's enough for this lifetime, thank you very much!

5. I regularly read peer-reviewed literature about CP and other conditions that cause spasticity (stroke, Parkinson's, TBI, SCI, etc.) Medical information on the internet, by and large, is highly suspect and fraught with errors--I avoid it and go straight to scientific sources. I go to my doctor armed with the knowledge of what works and what doesn't. I don't rely on him to know all the answers.

6. Finally, and most importantly, I've surrounded myself with friends who are an incredible source of support. This includes, for the first time in my life, friends with CP who are at all functional levels. I refused to interact with other disabled people for many years (all part of that denial that I talked about earlier)-- what a shame. At the end of the day, it's other folks with CP who understand what you're going through. I encourage seeking others out, not just on message boards like this, but also in "real life" I have one friend that I talk to almost every night who has CP-- she's been an incredible source of support to me on those days when I'm not sure how I'm going to keep going in spite of CP.

Ok, I"m sorry if this got a bit preachy, that wasn't my intent. I welcome feedback!

Take care of yourselves!


musicmaker650 01-19-2005 10:40 PM

Re: cp symptoms increasing with age
thank you for your post. We are much alike in the fact that our walking using canes (in my case) and a wheelchair about 30% of the time, and I can walk unaided for short distances too. I am 54, and I have been doing this all my life, with periods of time recovering from the 11 operations I have had. I'm a good swimmer, and I have lifted weights for most of my life. Like you and others here, I need to keep my upper body strong. There is only so much I can do with my legs.

I am going to have surgery on my left big toe next week. They are going to use a metal plate and screws to straighten the toe. It lays across my other toes and has become very uncomfortable. The surgeon is going to fuse the main toe joint into a straight forward (normal) position. I have feeling in my big toe but I can't really move it, so fusion is no problem for me. I don't wear boots. A cast will be put on like a boot, for about 8 weeks... As a rule, foot surgery can be painful and I will probably have to elevate my left leg for a while... I have been through foot surgery before, the last time was 20 years ago. I do remember

JellyRJFan 01-20-2005 07:53 AM

Re: cp symptoms increasing with age
Wonderful post, NJenn!

Musicmaker, I had my right second toe and big toe "fixed" a while back. They were going to release the tendons in my second toe, but they were too tight to cut so they had to take out a bone and then fuse the toe. That was [i]painful[/i], but the big toe was a sinch! I hope it goes well for you :)

musicmaker650 01-20-2005 08:40 AM

Re: cp symptoms increasing with age
Hello JellyRJFan,
I had broken the second toe on my left foot, some 40 years ago and there's a bone spur on the top center of it that was irritated by the big toe crossing on top of it. Ouch! My surgeon said that they normally cut the tendons, but because of my CP and the tight tendons, fusion will be the best course of action... They don't call it Spastic Diplegia CP for nothing, do they :)

All times are GMT -7. The time now is 05:29 PM.