Adults with cp and neurologists

Hi Helen,

There is something that I left out of my last posting. When I first started out trying to find out why in my ability to function and sustain my lifestyle was declining, I heard a public service announcement on the radio that was my first clue.

The radio announcement said that many people diagnosed with cerebral palsy in the 50's and 60's in particular might have been misdiagnosed and, might, in actuality, suffer from a condition known as Dystonia. The announcement listed potential symptoms that sounded alot like my initial symptoms so I contacted the Dystonia Foundation in the U.S. and asked for information to be sent. The spokesperson in the announcement was the tv actor Michael Connors, who had once starred in a tv program called Mannix. Some may remember him from way back when.

Upon receipt of the information, things started to line up a little. Through the Dystonia Foundation I received the phone number of a hospital that had a movement disorder clinic and when I called I was given an appointment with a doctor who could evaluate me. It turns out that I have Dystonic Cerebral Palsy. My original diagnosis of CP was deemed corrected but the dystonia accounts for some of the posturing of my limbs etc.

Finding this out didn't change how my treatment is handled much but it explained some of my other experiences that had or were occurring and continue to do so. It also gave me a wonderful doctor who assisted me for 10 years before leaving his post to work for a pharmacuetical company because of the fiasco that is happening in our healthcare system (a precursor of our current, ongoing problems within our healthcare system.)

I hope that this information helps some find new or additional avenues of treatment.

Hi Chris, and welcome to the forum. You have found the right place to meet people who understand what you are going through. As you have probably read, in this thread, Helen recomends printing and reading, and refering to the fact sheet produced by Scope on Ageing with CP. Its a very helpful fact sheet, and you might find it useful to have a copy handy to show to family, friends and even your GP to help them understand what you are going through, and that you are not making it up. Dont worry, I think most of us have been there at some stage, probably due to the fact that as a person 'born' with CP we have learned to just get on with it. What people fail to understand is that as you get older it gets tougher and more difficult to get on with. Its frustrating and depressing, and lack of understanding dosent help, although I am sure they dont mean any harm.

With regard to the Botox. I have recently had this treatment suggested to me. I was told that it last for approx 3 months, so I could try it and if it works, all well and good, if it dosent at leaset we know it will wear off after 3 months. At the moment I am attending my local hospital once a week for a 25 min Hydrotherapy session, which seems to be helping to loosen my muscles. I also take Baclofen tabs, 10mg twice daily, three times if I feel I need it. Like you, my CP affects one side more than the other, although all four limbs are affected. I can walk unaided, but I am using my crutches more now, and have a rollator for the 'bad days'. I cant walk very far and have a wheelchair which I use outdoors. I try to keep on the move, as I know that once I stop I wont get going again, which is why I am reluctant to accept surgery.

Well, I hope I have helped and look forward to hearing more from you on here. Good luck with that little girl, take care,

Karen

Hi my name is Mari-Anne i am new to the forum and was interested to read of the experiences of other adults with CP. I have had CP since birth and this has mainly effected my legs. I walk with a slight gait and my right leg and foot turn inwards . I have had many operations to enable me to walk unaided and as a child I had lots of treatment. However since I was 16 following my last major leg operation I have not had any further treatment. Up untill 12 months ago I could still walk unaided and had worked for my local Authority for 26 years from the age of 17. Suddenly without any warning I started to have falls. My legs would give way without any warning and I was refered by my GP to a Neuro physiotherapist who gave me an exercise programme and I use a delta walker when walking outside. I was refered for orthotic shoes at the local hospital and to a neurologist who suggested that I may need Botox injections in my feet as they are now both turning inward. This has never happened! I have not yet had a fitting for shoes either. I received a letter from the physiotherapist who was liaising with the Neurologist and in April I was discharged for not attending any follow up appointments. The problem was that the physio wanted to see me when I had new shoes and I'm still waiting for an appointment! I'm 44 years old and things have got progressively worse over the past 12 months. I'm feeling slightly embarrassed that I need help with everyday tasks such as dressing and feeling fatigued all the time even after short periods of exercise. My hands tremble slightly, my co-ordination has gone to pot and I have pains in the back of my neck and a constantr headache which needed 3 weeks of hospital treatment. The Neurologist doesn't seem overly concerned abot this but I have spoken to my GP to get a referal to the Neurology Unit at the hospital where I was recently a patient. It's a 50 mile round trip in comparrison to a 20 mile round trip to see my current consultant but I reckon that this will reap dividends in the care I'll receive. To top it all off my daughter was diagnosed with Myasthenia Gravis last October and I'm naturally worried about her a well. My husband has been running about from hospital to doctor and back again for the past year with the both of us. With working on a full time basis I seem to be constantly shattered when I come home and at weekend it takes me all my time to lift my head off the pillow. With all the cuts in Local Authority spending I might be offered early retirement. I dare say that others will have similar experiences to mine but it's nice to be able to share problems and hopefully find practical solutions.

Best wishes

Hi Ann Marie, welcome to the 'club' ! I think you will find lots of us on here who are in the same 'club' as you, in that things are getting more difficult for us as adults, and there is very little in the way of support and understanding. I had a regular physio programme at my school until I left in 1979 at the age of 16. The physio and all other support then stopped and I was left to get on with it. I went to St Loyes College, in Exeter and trained as a telephonist, got married, and in the early 80's got my first job. Unfortunately, by 1990 I was finding going to work so physically draining I had no choice but to retire on health grounds in order to have a 'life'. This helped at the time, and my life, for the next 15yrs was reasonably stable as regards my health and physical fitness. In the last 2 years things have got much worse, my feet are very sore because of the abuse they get from my walking. I tried using my wheelchair more, and this gave me terrible back problems. I have shoes from the orthotics department which are not much help, they make them to fit but they soon wear out of shape and give me no support. I have recently started Hydrotherapy sessions at my local hospital, which is a 45 min journey each way, but it is helping, so its worth it. I have had my fourth session today with the Neuro Physio and although I have slept for 3 hours since arriving home, I know that by 2mrw I will feel the benefit. Unfortunately, there is no Hydro next week. I just hope, missing a week dosent set me back.

It is sometimes hard to feel positive. I am normally a happy cheerful person, but I have to admit that my CP is begining to get me down. I feel cheated in a way, because all my life I have believed that CP is not progressive. I suppose by medical terms it isnt, but in reality, with aging, it IS.

Its good to come on here, know I am not alone, help others if and when I can. I just wish we could get some sort of support going for ADULTS with CP as there are not many health professionals who even know we exist never mind know what to do with us.

Well, thats my ramblings over with.

Take care everyone Karen

Hi Helen, just when we think things are looking up eh! Sorry your appointment has been messed about, its so frustrating. Last week I had a Hydro session and Eye Clinic on the same weekend at the same hospital - great, two birds etc. On the way to the hospital I had a phone call on my mobile to say the Hydro was cancelled. Today, I have had a call from my GP to say my appt for blood test 2mrw (I have to go every 2 months) has been changed to Friday. My calendar has so many changed appts, I can hardly understand it LOL.

Well, my Hydro today was my last session, apparently I have had my 6 weeks. They have put me back on the waiting list for a further 6 weeks sessions but cant say when that will be. The physio I saw today said she didnt think my legs were any stiffer despite stopping the Baclofen so she will leave it to me to decide. I think I will go back to how I used them before, where I used to take 2 daily for a week when I feel I need it but not take them for months at a time as I have for the last 6 months.

Take care, keep your chin up.

Love Karen