I am new here and have some questions

musicmaker650

I have said this before,
I had many surgeries to relieve the spastic muscles I had trouble with. My doctors were very expensive and the surgeries were expermental in the 50's and 60's. I am 54, and I have no trouble with muscle spasms now that I take potassium supliments. Being 54 I do suffer from arthritis in my thumbs, neck and spine. Botox will not benefit me, but for some, especially the young (under 21) it can help. You ladies in your mid thirties to forties may look for temporary to no lasting benefits from Botox... just pain and renewed spasticity

Alinka

Musicmaker650,

thanks for sharing....especially about the potassium. I have never heard of the fact that it might help with CP spasms...I will give it a try,as I have problems with spasms.
As for Botox, I take part in a study in which they are trying to measure the effects of this drug on adults with CP, so I am tested for the outcome every month, they videotape my gait and check it in the computer...I will let you know if they find anything interesting on me this Friday.

A.

musicmaker650

Alinka,
How old are you, if I may ask?

Alinka

29, but there are older people as well in the study

musicmaker650

Thanks Alinka,
I just asked for you age, to give me an idea of your life's experiences

Alinka

Well, I do not feel old yet, however I am no CP child any longer. My surgeries were done in the 80´s and 90´s.

As for my working experience...I graduated from the university in Prague last February after gaining my BA in Teaching English As A Foreign Language and MA degree in English and Scandinavian languages - I have been teaching English since to both children and adults.

prisc1125

Alinka,
It was not the easiest road by any stretch.

Crawling? Yep, I resorted to that often. I had terrible balance on crutches and had a walker alot around our apt. I used the crutches at the very beginning but got blown over by a wind gust once and slammed by a door which was pushed by a wind gust another time. This one threw me into a parking lot and I was sure I broke my cast!
The days prior, I was still drugged with the surgical meds so I was skirting around fabric bolts with my mother like it was nothing. Then the wind gusts came...

But I know what you mean with trying to be independent as possible. I relied some on the kindness of friends because I really had no choice....hubby was at work and I had to get to PT. It was embarrassing!

I could see why you needed to assert yourself with the treatments. Need to have some semblance of a life! It is easy to get caught up being a perenial patient -- know it too well. Unfortunately, it has become part of my reality and I am always trying to minimize its impact on the rest of my life. In some ways, it has worked. But mostly, it tempers my views on things...

Had you ever gone through PT? Or was that the therapy your mother was urging you to try? I am glad I never went through PT as a kid....it has been an ordeal now. But there are certain aspects of it that i know are necessary.

Later...

Prisc1125

Alinka

PT - yes, since they discovered my CP diagnosis, which was approximately at 13 months of age. ¨I did Vojta (Vought) therapy mainly, as this famous CP therapist was of Czech origin, so it is basically what you get here out of PT: I think it helped a lot when I was a child, but after reaching adolescence the effects were less visible and also, I found that a bit difficult to continue exercising on daily basis, as you need assistance of another person during these exercises.
Also, I went through several intensive treatments in different CP centres (or spas, if you wish).

My worst experience, however, was basically the very first one - when they discovered my CP, the doctors sent me to a center, which has been a nightmare for me ever since. It was really like being in a prison. When you came in, you had all your personal belongings taken away from you, your hair cut, parents sent away and then the therapy started. No visits were allowed, because the management of the centre were afraid of disease spreading in the centre and also they thought that we would be distracted by the visits of our parents. I was really shocked at this course of events and I can remember it with plenty of details, even though I was 3 years old then.
After some time they had to send me home with a mental breakdown. It dooes something with me even now as I type this... a disabled child in a Communist country...not an easy thing to be....

A.

prisc1125

Hi Alinka
I don't even know how to respond to that experience! Unbelievable! To be put through that at such an early age and to have a breakdown so young is horrific! And the ignorance about the CP "spreading"? Good for you for having the courage to take control of your life after that experience.

PT is typically started very young here on CP kids. I did lots of activities as a child like any other normal kid because a) I did not have a dx; and b) the neuro told my mother just to keep me active. I am grateful for both thinking about it now. PT did not formally enter my life until my injury and then surgeries. But, as you say, most of the exercises really need two people to get the full effect. That is partly why Pilates has been such a great program....but the passive stretching still is missing.

P.

Alinka

OK, I didn´t put it quite right here - the staff were afraid of spreading of the children´s deseases like chicken pox, tonsilitis etc. amongst, not of CP to other people.

It was a difficult time for me, but it was a different regime also...I mean communism was trying to pretend that the disabled didn´t exist in the society, so the tendency really was to hide us away from the general public and you have to understand what I described in this context.

A.

newcastle2

Hi Alinka,

When I was 2 years old I went to Teplice (a town in the North of Czech Republic, there is a treatment center there for CP kids) for 3 months and one year later, when I was 3, I went again for 3 months. I can´t remember too much of that time (but some memories, not very pleasant, I do have) but my mom says it was a nightmare. I had my cloths taken away, no visits,....etc., as you described. And I had chickenpox there in Teplice. I can remember it well, it was 6 of December (Mikulas) (St. Nicolaus day?) and I was alone in a room, separated from others (I don´t know the word "izolacka" but I think Alinka does ), while other kids had fun. For me as a 3 year old it was really terrible!

Katka

Alinka

Oh, for sure I do know Teplice...mine first visit was to a different place, however.

I was treated in Teplice when I was older...I went there when I was five for the first time and I had my mother with me - they must have been scared by the breakdown I had suffered earlier to allow that, as it was not a normal practice at that time.

Later on I went there alone (I mean to Teplice), but I could survive it somehow, even though I hated not being able to see my parents for several weeks or months. The biggest problem was the filthy air there - there is a lot of coal-mining industry in the area and whenever I came there, I caught some stupid disease there because of the air. So, I was quite familiar with the sick-room there. .

Anyway, I feel really strange about this experience - as if something was stolen from me that nobody can give back to me.

Kat, did you go anywhere else apart from Teplice? And how about surgeries?

A.

newcastle2

When I went for the first time to Teplice (2 y/o) I went there with my mom too.

As my mom had so bad experience from Teplice, since I was 6 y/o I used to go to Piestany (a famous spa town in Slovakia where people with CP are treated). I was there 5 times and as a kid I hated to go there sooo much but as a teenager I spent it great there and I have really good memories from there. Then, when I was 16 I went to Kostelec nad Cernymi lesy (another town in Czech) and it was amazing there . I don´t know if you have been to Kostelec. In fact, it is a rehabilitation department of the hospital in Kolin (I think). Everybody there was very kind with all the patients and their relatives. The treatment was very good too (I went there for the laser, as at that times (1993), laser was not available here in Slovakia). I heard for the first time about Vojta there in Kostelec.

As for the surgeries, I underwent Achilles tendon lengthening, at the age of 5 (like most of the people with cp). I had it done in Brno. Since then I´ve had no more surgeries, as no physician recommended it (we went even to Prague to have another opinion too, but they either didn´t recommended any surgery for me). They all said any further surgery would worsen my condition.
Later on, I was diagnosed valgus hip and I was told, in the future I will not avoid total hip replacement (They didn´t mention derotational osteotomy in my case but one ortho said this surgery would not work in my case due to my adductor´s contracture and spasticity).

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Take care

Alinka

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To your other questions: No, I have never been to Kostelec. Teplice for me all the time and then at the age of 19 Mariánské Lázně, which I really liked. Got to practicing my German, as there were many German patients in that spa

Lucky you with only one surgery...I really envy you with my 6 and more to come in the future. But, it could be even worse....I know and don´t want to be too negative. It is just I have some of my experience kind of hidden in me and don´t know what to do with it.

Alinka