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Alinka 09-09-2004 01:10 PM

I am new here and have some questions
 
Hallo, there,

I am new here and I am really glad to have found this web, because in Czech Republic where I live there are no boards like this for people with CP and I find it really difficult to find someone who could help me with some of my concerns. I am 29 and my CP affects my legs and my left arm. I can walk unassisted, though. I work as a freelance English teacher in Prague and my job includes a lot of travelling and walking round the city.

I feel that lately I have really suffered from much fatigue. It is much worse than what I was used to. I think it is CP-related. People around me say I should stop working, that it is rather unusual for people like me to work full-time, but I want to work. I need contact with people and I want to use my education. Are there any of you working full-time? How do you manage? Any survival tips? :)

My second question is this: I sometimes have problems at night, as I cannot fall asleep due to spasticity...it is not (too) painful, it is just that I feel that my muscles do not relax to the extend they should. I sometimes take a hot bath, but lately it seems to stop working on me that well....what do you do, if you have problems like this?

Sorry for writing such a novel here :)...a typical language teacher ;) !!!

Alinka

lastramy 09-09-2004 03:23 PM

Re: I am new here and have some questions
 
Alinka,

So nice to meet you! I was thrilled to read your post actually. I am 39 years old and I have Left spastic hemiplegia CP. I currently receive botox shots and I wear a brace to help with a dropped foot issue I have.
I work in a high stress environement that keeps me on my feet for a great portion of my 8 hours a day there.
My CP didn't really start bothering me until a few years ago. I now have low back pain, muscle spasticity pain, stiffness, range of motion problems, and a lot of left hip pain. But my main complaint is the fatigue!
It seems like such an effort to drag the left side of me to keep up with the normal right side.
I take lots of hot showers, I put on muscle rub, I take celebrex, and I do a fair amount of exercising.
Although it has gone down some because of time restraints right now.
What is extremely helpful for me is massage! I cannot get a cure for my problems, but it sure does help 100% for the fatigue problem.
I can't go often because of the cost, but it is well worth the money spent for me.

Stress is a huge factor for my spasticity to get going out of control, so I try to avoid getting stressed as much as possible.
I think working is a good thing! Keep it up for as long as you can. Moving and walking and keeping those muscles working is a must for our issues. If you were to stop now you would probably end up with more stiffness and fatigue. I am reading a book right now that basically says our bodies were designed to move and be used in full motion. The bottom line is use what you have or lose it!
Work can be a distraction from medical issues. It can keep your mind on other topics so you don't become obsessed over pain issues.

Yes, your body is now telling you that it can no longer compensate for the kind of movements that your body is used to right now. People with CP will gain age related symptoms 80% faster than those without CP.
BUT.....................the group of people on this board right now will probably agree that we are not quitters, and up for the next challenge that comes our way. We are here to help you in whatever way we can.

Now..............I was in the Czech Republic about 10 years ago. My distant relatives are from the Czech Republic! I was there on my honeymoon and loved everything about Prague! I would love to go back.
I thought the old historical parts of the city were breathtaking! The St. Charles Bridge....I hope I got that name right...........was fantastic. I have a hand drawn picture of that bridge in my home.
It is very nice to meet you and I hope we hear from you again soon!

Lastramy :)

JellyRJFan 09-09-2004 06:10 PM

Re: I am new here and have some questions
 
Alinka, it's great to have you on the board! I look forward to reading more of your posts (hopefully I'll be of some help one of these days)!

Lastramy... where did you get the 80% figure? That is very interesting

lastramy 09-09-2004 06:28 PM

Re: I am new here and have some questions
 
JellyRJFan,

I found it somewhere on an internet article about aging with CP. The wear and tear from abnormal gait puts our joints under a lot strain. They will break down much faster than someone without CP. I don't remember the exact article as I've read several.

Lastramy

newcastle2 09-09-2004 10:57 PM

Re: I am new here and have some questions
 
Ahoj Alinka!

Vitaj medzi nami! :D It is great you found this board and joined us! My English is not too strong but it seems that the folks here understand me ;)
So, Iīm 28, walk unassisted just like you and the people on this board help me a lot with all the "cp related issues".

Katarina from Slovakia

newcastle2 09-09-2004 11:07 PM

Re: I am new here and have some questions
 
Ahoj Alinka

It is me again :) I worked full-time for almost two years and I had to travel to my work every day by train an hour. Now I work in my home town and it is better. Anyway, I miss it a bit.

Kat.

Alinka 09-10-2004 01:21 AM

Re: I am new here and have some questions
 
Hallo all and thank you for your responses!!!

Lastramy, it was great to read the advice from you. I too think it is good to work. I I know too many people who instead of doing something sit at home and their main hobby is seeing different medical specialists. I agree with you that massage is good and worth the money it costs.

I have tried Botox - I did that some 4 months ago, but it was quite painful for me as the injections I got went into the deep muscles, and it stayed painful a week, which was a nuisance at work, so I have mixed feelings about this therapy.

One thing that definitely works for me is floating. (Have you or anybody else tried it?) It was great to relax in the warm and thick "water". The liquid they use in the floating tank is so thick that you actually do not feel your body weight and all your muscles can really relax - they do not have to bear the weight of your body. I could walk much better for a week or so after the floating session.

I cannot afford it every week, but I am trying to arrange things so that I can have a session every month. I think that maybe if the brain gets the information of what it means to RELAX the muscles, it might help also in the long-term, but I am not sure if thatīs true.

Where are your distant relatives from in the Czech Republic?

Katarina - to je ale překvapení :)!! (What a surprise!!!) For those of you who do not understand whatīs going on, mine and Katarinaīs mother togues are so close to each other that we understand each other while speaking our own language). Where are you from in Slovakia? I have some relatives in Banská Bystrica - a Czech family living there since the beginning of the 20th century, only my grandfather came back, because he met my grandmother :)

Everybody - thank you for your welcome,

Alenka

Alinka 09-10-2004 01:45 AM

Re: I am new here and have some questions
 
Katka,
I work as a freelance English teacher. This means that I work for a language school that sends me to different companies round the city to teach in-site classes there. The problem is that many of these companies tend to be in the suberbs and they want courses either before the people start working (7 - 9 AM) or after they finish (after 5 PM) If youīre lucky, you fill also other times (early afternoon for young children). So, for example on Thursdays I teach at 4 different places - that means 4 hours of travelling round by buses, trams and underground.

Alinka

newcastle2 09-10-2004 06:29 AM

Re: I am new here and have some questions
 
Alinka,

Iīm from New Castle(s) (Nové Zámky) ;) . It is about 90 km from Bratislava (the capital of Slovakia, for the rest of the folks here. :) ) I also studied foreign language at the university but I have never taught, only some private classes.

Does anybody of you know if there is a chat on this board?

Bye!

newcastle2 09-10-2004 06:37 AM

Re: I am new here and have some questions
 
Alinka, by the way, what is floating? Describe it or translate, please :)
Last year I wanted to try Botox but I read and heard some contradictory stories about its results and possible risks. Moreover, I donīt know personally any adult with spastic diplegia who (would???) tried it.

Katka

Alinka 09-10-2004 08:36 AM

Re: I am new here and have some questions
 
Hi, Katka

floating is untranslatable. It translates to Czech as "floating" in this context :), so I bet that the Slovak word would be the same. (Otherwise it can be translated as "vznášení se".) I am sure you have this opportunity in Slovakia, just try searching the net. I found it in your country, but I donīt know whether it is allowed to write the name of the place on this board.

It is an egg-like tank, filled partly with a liquid that resembles the water of The Dead Sea.This means that you cannot really come under "the water" - you just [B]float[/B] on the top of it. When you enter the tank, you close it behind you and lie down. There are just some small lights on the sides just above the water level and some soft music can be played while you are inside, but some people find this distracting and choose silence instead.

This liquid is as warm as your body is and so is the air in the "egg", so you can relax without being distracted by the temperature around you. Usually, you should spend 1 hour in the tank. They say it is similar to what babies experience in their motherīs womb. I canīt tell, as I do not remember anything from that time :) Basically, it is a deep relaxation. The scientists say that the procedure helps tö synchronise the activity of the two brain hemispheres and reduces the stress chemicals in the body. So, there you have some information.

Botox: I only had it in one of my legs (both are affected, however) - I donīt really know what to think after the first attempt. I felt it helped, but it was not a big difference. Well, next week I am scheduled to see my doctor to measure the outcomes, so weīll see whether weīll give it another try or not.

Take care,

Alinka

musicmaker650 09-10-2004 08:55 AM

Re: I am new here and have some questions
 
Hello Alinka,
nice to meet you! Here in the US, we have a lake in Utah called the Great Salt Lake. If you swim in this lake, you can't sink under the water, you float on top... It is the salt content that keeps you on top of the water. The Dead Sea has a very high salt content too. It is basically the heat that benefits your body, relaxing your muscles. CP people find relaxing muscles is a little more dificult than our AB (Able-Bodied) friends. Have you had any surgeries or operations? Most of the surgeries discussed here, have been done on people here in the US with CP for over 50 years...

Alinka 09-10-2004 09:21 AM

Re: I am new here and have some questions
 
Hallo, Musicmaker,

I think that it is a combination of the salt and the heat in the floating tank. I have tried many "heat-only" procedures for relaxing my muscles, like sauna, infra-heat cabine, hot water etc. as well as swimming in the sea, but this was really different from everything I had tried. It is difficult to describe. I was surprised myself, how big the effect was. I didnīt expect it would do this much... But maybe it only works for me. I donīt know.... I just think it is worth trying.

Surgeries: yes, of course. I had both my Achilles tendons lengthened, which was really a memorable time, because I caught chicken pox 2 days after I was sent home from the hospital. :) :) :) Lovely time for me with the plaster on both legs and no chance to scratch ;) . However, it helped. I also had my adductor cut in the right side. I am not sure if that really helped. I underwent the last surgeries some 9 years ago - it was some muscle transfer in my feet, but it only produced flat feet in me, so that was absolutely a negative outcome. The doctors also wanted to put some bone transplant in my feet later on to correct the flatness, but I wouldnīt have it. At that time I was too tired of being a patient and a guinea-pig at the same time, as they told me they did not know what the result would be.

Take care,

Alinka

Strawberry1 09-10-2004 11:29 AM

Re: I am new here and have some questions
 
[QUOTE=Alinka]Katka,
I work as a freelance English teacher. This means that I work for a language school that sends me to different companies round the city to teach in-site classes there. The problem is that many of these companies tend to be in the suberbs and they want courses either before the people start working (7 - 9 AM) or after they finish (after 5 PM) If youīre lucky, you fill also other times (early afternoon for young children). So, for example on Thursdays I teach at 4 different places - that means 4 hours of travelling round by buses, trams and underground.

Alinka[/QUOTE]

Alinka, I think your situation would be fatiguing for an AB, too. 4 hours of travelling per day sounds really awful. So it would be good if you could reduce travelling, but maybe that is not realistic. For example, could you take some translation jobs which you could do at home?

Alinka 09-10-2004 12:28 PM

Re: I am new here and have some questions
 
[QUOTE=Strawberry1]Alinka, I think your situation would be fatiguing for an AB, too. 4 hours of travelling per day sounds really awful. So it would be good if you could reduce travelling, but maybe that is not realistic. For example, could you take some translation jobs which you could do at home?[/QUOTE]


I could, but there is lot of competition in the field of translating, so it would mean some time with no or very little income. As a translator, you usually apply for work through some agency that has a lot of translators and than wait if they choose to give you some work or not. I decided to reduce the number of lessons that I teach and get a partial disablilty pension from the state. Next year I would like to go back to the univesity and see if I can obtain a PhD and than maybe more jobs will be open for me. :)


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