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    Old 09-10-2004, 02:20 PM   #16
    jillw
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    Re: I am new here and have some questions

    Hi Alinka,

    Nice to meet you. I'm 35, have Spastic Quadriplegia and use an electric wheelchair for mobility. I'm not able to use a walker anymore but I can do most transfers independently.

    I've found this board to be a great source of information & inspiration. I love to read about the accomplishments of individuals & the drive to overcome obstacles. Regarding your spaticity, I have found eating bananas & other potassium-rich foods reduces leg cramps, especially a night. Also, Robaxin is a muscle relaxer/anti-inflammatory that isn't addictive. Hope this helps.

     
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    Old 09-10-2004, 05:28 PM   #17
    lastramy
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    Re: I am new here and have some questions

    Alinka,

    The floating procedure sound very relaxing! I have never heard of such a thing. Has anyone else?
    I would love to try something like that.

    Botox the first time for me was not real exciting. I get my gastrocnemous muscles, hamstrings, hipflexors, and adductors all done at the same time.
    Yes they are very painful, especially if you need the electro-stimulation to guide the injections. My benefits have been seen over time with the botox.
    I have regained some range of motion, it helps with the foot drop that I have, and I have regained some muscle mass in the calf area because with them weakened I can put the muscles to better use. I have been getting them for over a year now.
    I have had the chance this past summer to travel to England to meet a very special friend who is 12. He has spastic diplegia and gets the botox in the lower calf muscles. He is my very best little buddy and I enjoyed being able to visit him.
    I will agree that botox is not for everyone, but I do like my botox doctor, I just get a bit timid about walking into a pediatric clinic for an appointment.
    Oh well, you gotta do what you gotta do...........

    My relatives are from Prague.
    So how does CP translate in the Czech language?????

    Well I am very glad you are here!

    lastramy

     
    Old 09-10-2004, 07:07 PM   #18
    prisc1125
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    Re: I am new here and have some questions

    Hi Alinka
    I happened on your post -- welcome and thanks for sharing! What caught my eye was your experience with botox. I had the same and two years out, have a "botox button" in the area of my calf where they did the injection. Have no idea why I do.

    I am 35 and was dx'd with spastic diplegia CP 4 yrs ago prior to what became 4 reconstructive foot surgeries on my R foot. What has been most difficult -- aside from the chronic pain and management of it -- is the learning curve involved with having this dx. It is not the glam syndrome and lots of people don't really understand what it means. For the most part, I am very high functioning and have managed to accomplish quite a bit; most of my friends know me as being active and able. So, I keep the CP dx discreet b/c I don't want to risk changing peoples' perceptions.

    More than that, it really is a risk in the workplace to hint about this dx....chronic illness is an expense and one not many companies wish to incur. I do not need for people to start second-guessing me either. But, as you cited, it is hard to always mask the pain and the fatigue of spasticity can be all-consuming.

    My other adjustment has been some of what I lost to the surgeries and the CP's effects on the body. Prior to the surgeries, I always had foot issues, but was very active with running and sports. Except for a thyroid condition I need to manage, I rarely went to the doctor except for bronchitis or the like. Since tearing a ligament after a marathon 6 yrs ago, my world has become complicated by doctor visits -- too numerous to count -- and constant monitoring as well as the trials and tribulations of finding pain management that works. So, I don't feel as care-free, I cannot run (but am very grateful to walk!), and I fight the depression that often comes with chronic pain. This has been all in the last 4 yrs., coupled with the stresses of career and plain survival.

    Being in the "mild" category is a strange place with respect to getting care....most CP treatments can be too risky and ruin what we have, but we are always threatened by contractures and need intervention of some type.

    I am glad you have joined the boards. Please feel free to ask anything....I am quite interested in the botox experience. Have not met someone who has had such a similar experience.

    Cheers
    Prisc1125

    PS You have a fascinating career! What did you study to do that?

    Last edited by prisc1125; 09-10-2004 at 07:09 PM.

     
    Old 09-10-2004, 08:04 PM   #19
    JellyRJFan
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    Re: I am new here and have some questions

    I haven't heard of the floating treatment either, but I would very much like to try it! Often times I have lots of trouble relaxing... especially my upper body, which is strange to me because my legs are effected more (I just found out I have spastic quadripeligia). Right now I'm in the process of getting an appointment with a Botox doc, but it's been difficult because he's at a children's hospital in LA, I recently relocated to Texas for school and this guy is very busy. If any of you have anything else to share about your botox experience please do! I'm very excited about it, but at the same time I know that it might not work and I might not even be a good candidate for it. prisc, since you brought it up, I've read that most contractures begin developing in early childhood, but is there ever a time when it's "too late" to get a contracture? I'm only asking because I feel I might be getting one in my hips. Also, for those of you that live in humid climates, does it effect your spasticity? Ever since I moved (about a month ago) I've felt way stiffer and at least twice as tired... I'm thinking it might have something to do with me not being used to this crazy weather.

    Sorry to ask so many questions in your thread, Alinka! I'm not trying to steal your thunder, I promise

     
    Old 09-11-2004, 01:53 AM   #20
    Alinka
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    Floating and replies to your questions

    Hallo, everybody,

    it was interesting for me to learn that no-one had ever heard about the floating (floatation) procedure, since it was invented by an American scientist and writer called John Lilly I think. It is also known under the names John Lilly tank or sensory deprivation tank. I have found a list of public centres that offer this service in the US on the internet, and I am sure you will be able to find these as well - I donīt think I can post the link directly here, but just type "USA floatation tank public center" and I am sure you will get to many links. It seems that the prices can be anything from 35 to 80 US dollars per session. I donīt know if thatīs a lot for you or not. I get it cheaper in Prague, but thatīs because the salaries here are lower, so nobody would do it for the American price here. It is not offered as a standard medical procedure in Czech. I just read about the effects and thought it might be worth trying and indeed it was, at least for me Give it a try and then tell me what your reactions were, if you want.

    Lastramy: CP translates to Czech as DMO - dětská mozková obrna.

    Prisc: yes, I do know what you mean by the Botox button. I donīt know why I have it, either. Well, weīll see on Friday what the measurements will say. Here in Czech you can get Botox for CP only if you agree that the effects will be measured by a special kind of machine. This machine presses the muscles in question and measures how much reaction it gets. If this response is lower than before the injections, it means they work for you. I hope I put this right. When my doctor saw me last time, she was pleased with the results - I felt that there was a difference, but... Sometimes I was tired and then it was a bit difficult for me to walk with the posterior tib. weakened. It seemed as if the other muscles could not quite control the situation after a lot of walking. But maybe they would just need more time to become stronger...I will let you know what the doctor will say on Friday.

    How did I get my career is another question: well, I started studying for my BA degree at a teacher-training college of Charles University and then went on to get an MA in English and Danish, specialising in Danish....but both subjects were equally important, the major in Danish only meant that I wrote my diplomma thesis in Danish. After I graduated, I started teaching freelance for several language school. It has some advantages and some disadvantages. One of the advantages is that I can organise my time and if I donīt feel well, I can stay at home and teach my lessons later on. I am my own boss . On the other hand, however, the job requires a lot of travelling and there is little work during the summer, which means that you have to be very careful not to spend all the money you earn immediately after you earn them, but save them for "the worse times".
    Apart from that I organise some music workshops - I am a great fan of gospel music and I like sharing that interest with other people, so every year I organise some workshop with teachers from abroad and we do a concert....I like it, even though it is a lot of work every time.....

    Alinka

    Last edited by Alinka; 09-11-2004 at 02:36 AM.

     
    Old 09-11-2004, 07:00 AM   #21
    prisc1125
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    Re: I am new here and have some questions

    Hi there JellyRJFan and Alinka!

    JellyRJFan, re: contractures, no, there is never a time when it is too late to get them. Given the nature of spasticity, which constantly causes muscles to be tense, contractures are always possible. My ortho is always mentioning them as something we need to battle. I had my toes claw due to contractures and had them released; had botox, which did not help, and the toes reclawed more and then had to be re-released. Then there is always the threat of the calf becoming contracted and the muscles there need to be released. I seem to have an unusual case where my muscles keep retracting. Since I am very active with weights and such, I guess there are extra loads that cause the contractures to hasten (just guesstimating at this point!).

    Alinka, that is an interesting way that they test for the effectiveness of botox and I wish we had something similar. Here, in the US, testing is mostly subjective by the patient's reaction. The only objectivity that comes in is via ROM measurements. WHen I had the botox, my whole leg spasmed uncontrollably during the procedure and I could barely walk out of the facility without throbbing. I had pain for days and now have that "button" 3 yrs later. Had a tiny result that lasted 3 days about 6 weeks out and that was enough for me. Never again! My leg was not anesthetized during the procedure and I was sweating and biting the pillow during the 3 or so long minutes it seemed to take for it to be over.
    What a great career and field of study! Do you live mainly in the Czech Republic as your base? And the flexibility.....especially when all this spasticity stuff acts up.
    What are the attitudes in the medical community there toward CP and its management?
    Also, what kind of surgical procedures did you have?

    Cheers
    Prisc1125

    PS I have ties to Eastern Europe in Ukraine.

     
    Old 09-11-2004, 09:01 AM   #22
    Alinka
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    Re: I am new here and have some questions

    Prisc,

    yes, I do live in the Czech Republic as the base, but I spent some time living in Denmark too, which I really enjoyed, as they are very friendly towards people with disabilities...I mean everything is accessible for people using wheelchairs and nobody really comments on you having a disability, which is not the case here. The only places that were difficult to access were some of the old houses with very narrow and steep stairs, but otherwise it was very nice to live there without comments like "Oh, look at that lady, she cannot walk properlyĻetc."

    I like my teaching job and meeting all the different people I teach, as it makes me learn even about many different subjects. Teaching in a bank, for example, means that I have to study some banking stuff. Then I have two groups of very young children. That means I have to revise my fairy-tales sometimes and so on.... I think it is a great, varied and flexible job.

    Botox: my first experience was very wierd - you never get any pain-killer to help with the pain associated here. I was told only that "Well, this might hurt..."

    I didnīt expect that much pain really and was very afraid to stand up afterwards. Also, I had quite a few medicine students present during the procedure and when they saw me going green , some of them said: "Oh, Iīll never get used to this," and turned away, which made me feel very strange. I felt very tired afterwards, had a nausea for a day or two and my leg hurt, then it went away and I felt I was using different muscles afterwards then those I normally do - in this respect it worked on me, and maybe it helped to strengthen the muscles that needed strengthening, but I am not sure if it was worth the pain and side-effects. Iīll let you know on Friday when I have got it measured on Friday.

    The doctors here work mainly with CP children, once you turn eighteen it seems that they think you disappear or vanish, because there is very little care provided. I got to my neurologist, because one of my English students is a physiotherapist and he helped me to get in to her. I like her - she is very friendly and respects me as a person and not just as a patient, which is great.

    I do not go to any orthopaedist, because I think that they are much for an aggressive form of therapy - they would cut whatever they can find and I donīt like this attitude. I described the procedures I had done earlier on in my reply to Musicmaker, so Iīll copy it here once more, so that you doīt have to look for it.

    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.

    So, there you go with another novel from me...

    Alinka

     
    Old 09-11-2004, 09:21 AM   #23
    Alinka
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    For JellyRJFan, spasticity in the upper part of the body

    is normal, because you basically compensate for what you cannot do through your legs. It means youīre actually overusing the trunk muscles. I was told once that I am using my NECK muscles to compensate when I walk and thatīs why I have problems with my neck.
    Thatīs what I was told by my doctor and I quite believe it.

    Alinka

     
    Old 09-11-2004, 09:54 AM   #24
    lastramy
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    Re: I am new here and have some questions

    JellyRJFan,

    Yes, humid climate does causse trouble with spasticity! I would know as I lived in Florida for 2 years ( West Palm Beach area). They have to be the capital of humidity! Whew!

    And yes you can get contractures at any time and even after tendon release you can get them again. I wear a brace on my left leg and I had the contractures taken care of with the tendon lengthening when I was 18.
    I was told by the orthotics people that I should try to ealk without it when I can to prevent any more contractures.

    Good luck with the botox. I am a believer in botox only because I have stuck it out for so long. I think people expect pain to go away and for your walking to return to normal and that isn't the case. I was talking to a lady at the clinic who said that "sure my ROM is better, but I still walk funny".
    Well I had to tell her that botox is not a cure for CP.
    It has done positive things for me as well as negative. I don't like the idea of facing 10 shots per visit every 3 months....I have had over 80 total! I am going to sprout like a leaky water hose one of these days............

    The other downside is the weak feeling in the leg. I know that when I get this feeling the botox is working but it can cause a lot of fatigue at times.
    Now.........let me add that the physicians are starting with a low dose at first to see what the results give. I have had my dose all over the board and actually I think this last time they got it pretty close to just right. I have had few side effects from this round. Also.....yes I am a windbag at times..........the more you get, the more those muscles get strengthened, the less the "weak" feeling is there. My lower calf muscles are much improved and I get very little for side effects now than I did before.

    I am not trying to make any points here to refute what others have to say about botox. I have read that is works better in less severe cases.
    I know it doesn't work for everyone too.

    I almost decided to stop the botox and I let one of the areas (hamstrings) go without for a couple of rounds and I paid for that with the return of a lot of stiffness and pain. I guess for me it works as well as a lot of other things I have tried.

    Good luck!

    Lastramy

     
    Old 09-11-2004, 10:20 AM   #25
    jillw
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    Re: I am new here and have some questions

    Ainka,

    I'm not sure if the "floating" machine I've seen is the same thing. In an Arizona mall, there are these egg-like things on display for poeple to try. You lie down it, close the top, and water massages you. It's neat. It's insulation keeps you (& your clothes) dry. They are very expensive & too big to put in most homes. I'd like to try it but getting in & out would be difficult. I would come out like a wet noodle!

    Last edited by jillw; 09-11-2004 at 10:21 AM.

     
    Old 09-11-2004, 10:38 AM   #26
    Alinka
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    Re: I am new here and have some questions

    Maybe it is that - I donīt know....why is posting links not allowed here? A picture would save us this trouble. Yes, the tank is big and very expensive, but you are never dry after a session in the tank. Try and search "floatation tank picture" in Google, for example. But, these things are also available in different public centers in the US for prices from 30 - 80 USD.

     
    Old 09-11-2004, 10:52 AM   #27
    prisc1125
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    Re: I am new here and have some questions

    Hi Alinka,
    It is good to know that there are parts of the world -- Denmark, for one -- where people are more understanding and less outwardly judgemental. Even more, there are services in place to help those with disabilities. Here in the states, judgements are cast easily and quickly. I live not far from affluent suburbs and, hate to say it, that population can be the worst at staring or judging. My husband and I went to Paris last summer and I felt so liberated in skirts and shorts. We mixed with people from all over the world and physical differences are pretty natural. When I returned, I felt self-conscious about my thin R calf -- it is visibly quite different than my L leg.

    I did not have anyone observing me and I am kinda glad I did not. I was a sight biting into a pillow, sweating, and whimpering. The nausea did not hit me....just the throbbing and gripping pain. The doctor was trying to distract me with imagery....nothing could draw my focus away from the needle jabbing into me. And, b/c I have so little muscle in my calf, the plunge of the EMG-guided needle was that much more intense.

    Youch -- chicken pox and plaster! Nasty combo! Sounds like your surgeries were spread out across your early years. I had the Achilles lengthening, Anterior Tib xfer (complete vs split), heel slide, 1st metatarsal osteotomy, FDL, Posterior Tib lengthenings, and claw toe releases. Also had the toes re-released and the FDL relengthened in 03. Talk developed about a possible adductor release, due to excessively painful tight muscles there. But, after a visit to a hip ortho, where I had an MRI that was negative, the pain was more attributed to my gait changes and body's adaptation to them. How horrible it must have been to go through surgeries for unsatisfactory outcomes. I cannot agree more about how tiring it is to be a constant guinea pig....there are times when I want to say "ENOUGH!"

    I see your point about how most orthos can be aggressive when it comes to CP treatment. Fortunately, my ortho is very conservative and tries every conceivable option before surgery. Trust me, it is a very very frustrating process for us both.

    What I have found to be successful as a management approach is Pilates. To me, it is the great energy conserver. I have found that by strengthening my core and back, less energy is required to move so I have less of the compensatory pains elsewhere in the trunk. It is easier than PT visits to incorporate into your life and the benefits are many. It has truly been the gem in my management....I had horrible hip and back pains before but these exercises have changed alot of that.

    I do not have a neuro -- the one I was ref'd to proved useless and disinterested.

    Cheers
    Prisc1125

    Last edited by prisc1125; 09-11-2004 at 10:54 AM.

     
    Old 09-11-2004, 11:11 AM   #28
    Alinka
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    Re: I am new here and have some questions

    Well, Prisc, that sounds as if you went through many surgeries - my doctors suggested an osteomy for my hip subluxation, but I then asked for a second opinion and this second doctor told me it could be dangerous for my walking, which horrified me and nobody has seen me in the orthopaedic department since then.
    They have threatened me with many problems to come, but apart from fatigue and some level of pain in my flat feet and in my neck I have not had many. I have problems with fatigue mainly and with spasticity and spasticity related pain during nights, and yes, my neck hurts, but I suppose that is because of my work at the computer.
    For me floating seems to work and swimming and also breathing exercises. I donīt know anything about Pilates. What is that?


    Alinka

     
    Old 09-11-2004, 11:12 AM   #29
    Alinka
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    Re: I am new here and have some questions

    Plus: what was the outcome of the surgeries you had? Was it worth it?

    Alinka

     
    Old 09-11-2004, 01:12 PM   #30
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    Re: I am new here and have some questions

    Hi Alinka
    Yeah, the surgeries were many and wrought with complications, at least to the extent that I had infections in the incisions. Also, after the first surgery, when I was leaving the hospital and getting a cast change, my ortho had to set my foot in neutral with sheer force. I nearly went through the roof...I think that was telling that more work was ahead.
    I swim as well and love it. Also bike, and use machines at the gym. Nothing beats running!
    Pilates is an exercise method that focuses on core stabilization. It is like yoga in that it is about stretching and strengthening. But it is more dynamic and focuses on breathing and neuromuscular control. Check it out on the web.....Stott is a rehab-based method I do that is more anatomically focused (vs choreographed for ballet/dance).

    Were the surgeries worth it? I think so....though there were tradeoffs I had to make. I could barely walk on the foot prior to the surgery so that alone diminished quality of life. I could never have imagined what it would take to do it and recover. It took everything I had and the amazing help from my husband to get through it.

    The outcome is that I have a functional foot but have limited dorsiflexion due to some of the procedures my ortho had to do. My toes are piano keys (look and feel like) and that took an ajustment. The foot is smaller and shorter and aesthetically not ravishing, but it keeps me moving. I have what looks to be a bunion (or bursa) and bunionette developing and that is due to the forces in the foot.

    All told, I don't think I would have done differently....or had a choice.

    Cheers
    Prisc1125

     
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