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    Old 09-13-2004, 07:52 AM   #46
    musicmaker650
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    Re: I am new here and have some questions

    I didn't want to get into this discussion, but I want to let you beautiful strong women know, that here, in the USA in the 40's and 50's, they treated all kids with CP as if we were mentally ill... When I was 5, for 3 months, I was taken to a place called the Hillside House. It too was a torture chamber of horrors for a child! My cloths were taken away too. We were placed in a room with kids that had all kinds of disabilities, mental illness, no arms or legs, no faces and if we didn't have a bowel movement every morning, they would jam a hose up our butts and pump us full of water, till we literally exploded.

    I know in Hitler's Germany they killed tens of thousands of children, young adults, and the elderly who were mentally ill and disabled, even slightly disabled. It was part of preparing for the "super race"... I'm afraid that it's just "human nature" to be afraid of anyone whos different. I knew you people with disabilities, in the communist countries had a tougher time... Children are very resilient, and they do bounce back from just about anything, as long as they are loved by someone...

     
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    Old 09-14-2004, 08:49 AM   #47
    Alinka
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    Re: I am new here and have some questions

    Musicmaker650,

    you are quite welcome to write in this discussion and please do so, if you feel like it. . I would like to thank you for sharing your experience and participating. It helps to know that somebody went through similar things and understands what it is like. I was in fact afraid to post on this topic for several reasons.

    Firstly, I was afraid that sharing some of this might be too country-specific and that would kill the discussion.
    My second concern was that you people would be put off by the content and might think this was irrelevant for the normal daily life.

    I also want to make the following point: what was described in my previous posts about the institution treatment of CP in Czech IS THANK GOD NO LONGER TRUE. I am writing this to make sure that nobody looks down at the staff working at these centres today and I do not wish to offend anyone there. I have been writing about my memories because I see this as a kind of therapy for myself and I still have some things from the past I need to deal with.

    All of you: what was it like to grow up with CP in your countries?


    Alinka

     
    Old 09-16-2004, 11:27 AM   #48
    Strawberry1
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    Re: I am new here and have some questions

    Quote:
    Originally Posted by Alinka
    All of you: what was it like to grow up with CP in your countries?


    Alinka

    I live in Finland and I think it is a relatively disability-friendly country, at least in terms of accessibility, medical services and social benefits. It also has a high-quality pediatric healthcare system. For many decades, there has been a trend to integrate disabled people into society, not to hide them in institutions. So there is probably not as much staring etc. as in the former socialist countries.

    But even here people do not necessarily know much about CP. Many (most?)equate it with mental retardation and/or severe physical disability. So I don't tell people very often that I have CP, I just say that I have a mild paralysis in my arm and leg. When I was a child, I was more open about my disability, but I learned the hard way that was not necessarily a good policy.

    It seems to be case everywhere that congenital disabilities are somehow "less respectable". There seems to be a "caste system" of disabilities, and CP is certainly one of the lower castes <sigh>

    Last edited by Strawberry1; 09-16-2004 at 11:31 AM.

     
    Old 09-16-2004, 11:49 AM   #49
    Christine23
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    Re: I am new here and have some questions

    Quote:
    Originally Posted by Strawberry1
    When I was a child, I was more open about my disability, but I learned the hard way that was not necessarily a good policy.
    If you don't mind me asking, What type of things happened to you?

     
    Old 09-16-2004, 12:25 PM   #50
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    Re: I am new here and have some questions

    Quote:
    Originally Posted by Alinka
    All of you: what was it like to grow up with CP in your countries?
    Well, I had a lot of medical attention when I was younger, but I think here in the US as those of us with "mild" (sorry, musicmaker!) CP get older we tend to get ignored by the medical system. It's been my experience over the past couple months that if you want people to work with you you have to be very proactive. I do have a wonderful orthopaedic surgeon, who I've been going to for 17 years, but it's all the other doctors that seem to give me the brush off. As for the other side of things, I'd say that I had a fairly normal early childhood, all medical procedures aside. It actually wasn't until AFTER I stopped wearing AFOs that others started to treat me differently... probably because we were all a little older and were becoming more aware of differences. As I've stated before, I was pretty much treated as a "lesser AB", which caused me lots of confusion, especially now that I am trying to accept my disability.

     
    Old 09-16-2004, 12:30 PM   #51
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    Re: I am new here and have some questions

    Quote:
    Originally Posted by Christine23
    If you don't mind me asking, What type of things happened to you?
    I noticed that in the school yard, words "CP" or "spastic" were used as invectives. And with adults, I noticed that they often thought having CP meant being mentally retarded or totally helpless physically. And even if my disability is slightly visible, I probably don't look like a stereotypical case of CP. Once, when I was 11 or 12 years old, an older lady asked if I was a post-polio person, and I said yes, because it seemed the more respectable alternative. Strangely, the lady believed me, though polio was eradicated from my country long before I was born.

    Last edited by Strawberry1; 09-16-2004 at 12:33 PM.

     
    Old 09-16-2004, 12:42 PM   #52
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    Re: I am new here and have some questions

    Quote:
    Originally Posted by JellyRJFan
    Well, I had a lot of medical attention when I was younger, but I think here in the US as those of us with "mild" (sorry, musicmaker!) CP get older we tend to get ignored by the medical system.
    That seems to be the case in every country When I was 0-15 years old, I got a lot of medical attention, but then it just ended. I have noticed that pediatric neurologists/physiotherapists are nearly the only medical persons that know enough about cerebral palsy.

     
    Old 09-16-2004, 12:49 PM   #53
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    Re: I am new here and have some questions

    Strawberry, thatīs interesting what you mention about the polio - I have exactly the same experience!!!! and I tend to confirm that yes, I had it, if I am in haste and do not have the time to explain that having CP does not necessarily mean any mental retardation.

    And, if you read the "Wierd reaction of people to CP" thread, you can see that me and somebody else (Christine23) also arrived at a conclusion that people who aquired their handicap later in life, seem to be presented more like heroes, whereas we have known it since birth, so we do not that much help - we should know how to cope, shouldnīt we?

     
    Old 09-17-2004, 08:31 AM   #54
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    Re: I am new here and have some questions

    Hi Alinka
    That is a very interesting point you made about people having disabling afflications later in life and being considered heroes. I have had that conversation with a few CPers and my husband (AB). There is this stigma associated with CP and it is for that reason that I do not tell anyone I have it. I am fortunately able to get by with few telltale signs, but I have had friends remark that my gait was off in the past. It is so unusual that no one knows exactly what is wrong; just that something is.

    I have come to the conclusion that afflications such as MS or Parkinson's are ones that anyone "normal" person can get and there is a fear in most folks that such an illness could strike them as well. For us, however, the known outcome is mental retardation and a wheel-chair bound existence. That is what is typically portrayed in textbooks or what people have experienced in their interactions with CP. Somehow, the energy CPers have to expend to manage is seen with less admiration or respect. After all, how could any able-bodied person even begin to understand? It is a very tough thing to experience and I have made it my mission not to reveal to anyone outside of here or the medical community. Judgement is cast so easily.....

    The other night at class, I used CP as an example of a syndrome. I deliberately brought up the points that: a) a mother whose thyroid levels are not monitored during pregnancy can result in a CP baby (that would be me, but I did not say); and b) that people shouldn't be surprised by how many people they perceive as high-functioning could easily have CP (to emphasize that CPers can be functioning people). Both points were met with surprise and I was happy to hear the interest.

    Prisc1125

    PS Alinka: Hope your tests went well. Let us know!

    oops...I made some glaring editorial errors that I know came from being on Elavil. This stuff impairs my thinking....normally not this sloppy!

    Last edited by prisc1125; 09-17-2004 at 06:05 PM.

     
    Old 09-17-2004, 08:55 AM   #55
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    Botox

    Oh, yes, my test did indeed go well.... the doctor told me that I still was less spastic than prior to Botox and should the spasticity come back, I can contact them to get a new session with a needle and BTX and measurements.

    I think the spasticity IS coming back, but I did not feel like having BTX right now, as I do not want to be sick from the injection, when my school-year is starting and I need to get enough students to survive. The courses you donīt get in September are lost for you for the whole year.

    Anyway, I asked about the tests they did on me and the doctor told me that the machine they were using is basically a prototype and is used nowhere else at the moment. So, there you have the real guinea-pig

    Will write more in a little while, but I just finished working and I am really VERY HUNGRY!!!! , so I will satisfy this need of my body and then come back with more info...

    Alinka

     
    Old 09-17-2004, 03:44 PM   #56
    musicmaker650
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    Re: I am new here and have some questions

    Hey people,
    I have already said that anyone different from the norm, creates anxiety or fear in the "normal" sector of humanity... Botox is only temporary and if you are lucky enough to benefit from it, it a very good thing! Whatever you think helps you is good too... I do not suffer from spasticity, even though I have lived with CP for 54 years. This is not to say I have never suffered from spasticity... I know it very well indeed

     
    Old 10-02-2004, 06:42 AM   #57
    Carla
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    Re: I am new here and have some questions

    Hi,

    I've been reading the various posts here and by way of introduction ...

    I'm a 50 year old spastic diplegic and also live with fibromyalgia, aortic insuffiency and various 'breakdown' issues related to aging with cerebral palsy, notably, spinal stenosis, degenerative disc disease, scoliosis and osteoarthritis of the thoracic spine.

    I've found that 2 particular conditions share a similarity with regard to symptoms, with fibromyalgia. Hypothyroidism and mold toxicity (moldy houses). Also, it's been suggested that infants with cp are found to have low levels of thyroid hormone, and left untreated, the symptoms persist. If you were to google, 'cerebral palsy, thyroid' function, you'd see what I'm talking about.

    As well, a key feature of the adult with cp is chronic/constant fatigue coupled with greater spasticity. I've solved this problem by taking magnesium at 450mg twice daily; magnesium is a natural muscle relaxant. As well, I take an equal amount of calcium twice daily. Kelp has helped with an array of fibromyalgia symptoms. It boosts a sluggish thyroid. I live in a moldy house, but that's another story. My doctor told me that kelp is a mold inhibitor used by farmers on cattle feed, etc. No doubt taking kelp has suppressed mold toxicity symptoms.

    Magnesium has also been recommended by many rheumatologists to manage arthritis pain, particularly rheumatoid. Those of us with cerebral palsy are often magnesium deficient. For those experiencing generalised/all-over joint pain, you might consider having your levels tested. Also, a full thyroid panel might be in order. I'm classic 'sluggish thyroid'.

    [ removed ]

    I take 'doctor drugs' very infrequently, finding supplementing and good nutrition go a long way in helping me maintain my upright mobility.

    I welcome your input.

    Kind regards,

    Carla [ removed ]

    Last edited by moderator2; 10-02-2004 at 06:57 AM. Reason: please carefully review the posting rules

     
    Old 10-02-2004, 08:17 AM   #58
    musicmaker650
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    Re: I am new here and have some questions

    Hello Carla,
    Fibromyalgia and aortic insuffiency tend to be associated with heredity factors. If you have been less physically active throughout your life, this inactivity can add to your bone/mucle condition now, at your age. I am 54, and I have been physically active for most of my life. I suffer from osteo-arthritis in my fingers, elbows and shoulders, from my cane and wheelchair use. It's a "catch 22" situation... You're darned if you do, and you're darned if you don't. Magnesium is a great thing! I suffered from leg cramps at night for a long time. I started to take a supplement, and the leg cramps and mucle/joint stiffness have been greatly deminished... Your "sluggish thyroid" is common in many people too. We try not to say that all these things are related to CP, they are more related to just being human...

     
    Old 10-03-2004, 03:53 PM   #59
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    Re: I am new here and have some questions

    Hey Carla
    Welcome to the boards!
    Interesting your note about the thyroid connection. I was born with hypothyroidism and, over 35 yrs ago, the connections between CP and thyroid were not as well-publicized as they are today. My delayed dx of thyroid issues is the likely cause of my CP, though treatment was started early enough and my symptoms are mild (relatively speaking).

    Nevertheless, I have been down the surgery road for foot issues and really only got dx'd with the CP four yrs ago. It has been a strange trip at best.

    So, compared to alot of people who've posted to these boards and have had a lifetime of learning to deal, I am a newbie at it.

    Cheers
    Prisc1125

     
    Old 10-05-2004, 06:09 PM   #60
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    Re: I am new here and have some questions

    Hey Carla,

    Nice to have you here with us!
    I am hearing more and more of magnesium suppliments. How much of a dose are you taking per day if I may ask?
    I take vitamins suppliments that include a fair amount of Mg++ I think I take somewhere in the neighborhood of 250 mg/day. Probably not enough huh??

    I have spastic hemiplegia and I know all about the fatigue issues. I was pretty ambulatory with just a slight limp until 2 years ago. I am losing a lot of ROM in the hip, and my gait is totally different than before. I get regular botox injections and I have a "toe-off" brace for a dropping foot. I also use a cane for better support and for balance issues. I get quite a lot of help with the fatigue with regular massages. My therapist keys in on mostly my CP side and I feel so much better afterwards. I can usually keep the fatigue at bay for a few weeks at a time after massage. I can't thank her enough for all of her efforts!!!!

    Well, nice to have you here with us.
    Lastramy

     
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