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Ataxia UK
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Visit to the Neurologist

I saw the neurologist this morning and she told me she noticed how well I was still walking. I am doing Physiotherapy once a week and repeat the exercises daily at home. In order to practice my small motor co-ordination I do crochetting daily, it requires eye hand co-ordination. My handwritting has improved so much. I am sending a pictture of my latest project.

I have been diagnosed with SCA3 Machado-Joseph disease, this proves that a positive attitude, exercising all your muscles.

I feel blessed today

best wishes

Isabel

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Isabel, this is really great! I was wondering if you could share the exercises that you do? Then maybe other members of the group could try them, including me, not saying that we will all be able to crochet such a beautiful blanket as you, I for one have never done any crocheting in my life.

Here's hoping

Stephen

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Dear StephenJG

Thank you for your kind words, I have describe my exercises in a previous post bu will gladly do it again my email ialfaiate@hotmail.com. The reply of HazelCarr123 is great, please read that. She is doing great and gives great advise. I crochet, but the idea is do something repetitive, that uses small motor co-ordination, Hazel suggests moving beads from one plate to another.

Best wishes

Isabel

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Good on you Isabel! It's great when someone has something positive to say, whilst also producing something worthwhile! Your crochet looks brilliant, well done.

I used to do a lot of painting, what a fine motor Tremor has stopped me - not that I had much energy for it anyway. I have been waiting for a good day to post something positive, but alas, I am still waiting!

So lovely kind and helpful people, I wondered if you could offer me any advice as well?

The summer did not actually do me any favours, the heat knackered me out so I ended up doing all of my jobs early morning or well into the evening. I have to say, it was soul destroying, especially with the summer holidays and my beautiful children, but we managed, as we always do.

However, the worry of not being able to work and pay all the bills has not helped. And I have been waiting for a ramp for three months now and so feel tied to the house, because I have three stone steps up to my front door.

because I have three stone steps up to my front door.

If left to my own devices, I could sleep for 16 hours a day, even if this sleep is painful and uncomfortable, but it is becoming more and more and my only motivation is the children - they alone get me out of bed, but they live half the time with their father, so I am alone the rest of the time. I used to have my own business and most of my friends still work full time.

I am a pharmaceutical drug swerver, as I am so worried about being sedated and not being able to think straight. Which is also getting harder. I feel like I am slowly losing myself and even the most basic tasks are a real effort. I go up the stairs and my heart pounds and I get light headed and weak. I have to have an hours rest after a shower. I surf the furniture in the house and use a little scooter downstairs and have to use this when I go out too. It was so depressing and demoralising, I am only 43 and 83 every day.

My latest problem is that when I sit or lie down, I get pins and needle is in my arms down to my fingers and in my feet. They burn and ache and so waking up in morning is horrible. All of my joints ache and burn, I feel like I have done a workout or a heavy day in the garden. Every day. I have tried Amiltryptiline and It sends my muscles to sleep and so I feel like I have been run over by a bus next morning , I tried baclofen and it very quickly made me worse, weaker in mind and body…

I know I am depressed, but I am wary of antidepressants, however I wonder if anyone can suggest any antidepressants that suits cerebellum ataxia? Or any medications that could help me? Because My ataxia is being caused by secondary progressives Multiple sclerosis - I feel like the medical profession have written me off and they don't seem to know a lot about ataxia. I attended at the Walton Centre in Liverpool, where there is no ataxia expert, getting an appointment with neurologist or neurology nurse is a bit like getting an audience with the pope.

Sorry I can't be more positive at this time, but feel like life is becoming unbearable !

Thanks to you all for being there, and apologies to any other young newly diagnosed people

Lovenlight from liverpool x

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Dear Mermaid,

Thank you for your reply and it is good you were able to speak your feelings. Everyone has the right to express how they feel, but dwelling on it is going to hurt you more. This has happened to us, it was not in our plans, but as we can do nothing about it, lets do the next best thing adapting to what is. If I can help I will certainly will, you can email me at ialfaiate@hotmail.com

In earlier posts I have described my exercises but the reply from HazelCarr123, is great, please read it. But I will describe my exercises in a private email if you wish.

I will also not easily take any drugs, I am gluten intolerant and most of them cause a reaction, I am not prepared to live with that. I Take vitamin E morning and night because the neurologist says it protects the nerves and magnesium for cramps.

The neurologist did give me a muscle relaxants, it relaxed me so much that I laid in bed all day. That is not the way I want to spend my time.

The summer has been very hot in Portugal, that I began to look forward to winter. Actually winter is not so nice because I tense up and find it very difficult to function. Like you, I tend to do more early in the morning and late into the night. I am a translator, get a little bit of work to do at home, but also look after my 17month grandson, so he forces me on my toes.

I live in the third floor without a lift, at the moment I still manage the stairs, but I tend not to think about the future, whatever will be, will be.

Exercise will help with the pins and needs and improve the circulation, and you will certainly feel lighter. It is the slow circulation that makes you feel so heavy.

Your doctor will be the best advisor regarding antidepressants, my mother who did not have ataxia was on antidepressants throughout my childhood and adulthood, and I decided I would never take any and face the problems I may have without the help of a pill, so I am very reluctant to take any.

I suggest everyday you look at the positive things you have in your life. Focus on the things you can do. Every night before I go to sleep I think about 5 good things that happened to me that day and wonder what nice suprises I will have tomorrow. I have decided not to be a victim, but victorious, I will adapt when necessary to have a happy life. Read happy books, see funny shows on TV, do anything that makes you happy and bring joy. You may have ataxia, but ataxia can oly have you if you allow it. Decide to be happy.

I have applied for disability pension, it is not a fortune but as I do not go out to work everyday my expenses are also less.

I live with my husband and son, my daughter is living with her fiance nearby. At the momentI am preparing my outfit for her wedding. I am looking forward to that but not being with some members of the family who do not know about my condition, but knew my father (who I inherited this from) and will possibly pour their pity on me which is not what I need.

Cheer up, look at the good things life has given you and be greatfull for those, ignore what you think is less than positive.

Best wishes

Isabel

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Hi Isabel, I must say you are a real breath of fresh air. I admire your positive attitude as this is the way I try to live my life too. Like you I inherited my condition from my father, and like you he always tried to stay positive and happy. A cousin of mine who is very bad with this ataxia is just about the most happy and fun person I know. I look for all the funny shows and films on TV, find the humour in all the books I read and love to laugh (as long as I don't choke). I try not to do things which I know will make me sad or frustrated when I find I can no longer do them. I always look for the bright side of life, as 'every cloud has a silver lining'. I try to always be grateful for the good things and people that have been in my life that day, or perhaps they are always there and I regularly thank goodness for them. I do like your idea of thinking of 5 good things that happened that day and what lovely surprises will happen tomorrow: this I must put into practice because even though I try to do it regularly I do not make it a nightly habit and I feel certain this is a good way to be. I try to make at least one person smile every day - sometimes all it takes is a smile or a hello, this may be just what they need to cheer them up for the day. I do voluntary work (only one morning a week as that is about all the spare time I have. I enjoy helping other people even though at the end of the morning I am exhausted it is a good exhaustion). Yes I try to keep active in mind and in body. I tried sewing on a button last year and it took me about an hour. The problem was that I kept dropping the needle - it was far too small for me to hold, but I did laugh. Jigsaw puzzles are my therapy as I do not crochet and knitting was something I had to give up, for medical reasons, years before being diagnosed with ataxia. I also like word games and crossword puzzles - these are good for the brain/mind.

Keep your positivity and stay happy. Best wishes, Barbara.

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Dear Barbara,

Thank you for your kind words. I am so happy to find somenone with a positive outlook. We still have a choice and I choose to be happy, so I only do things that make me happy. If I where to focus on things to complain about, I am sure I would find plenty, but I choose to look for things that were nice instead

Be happy and enjoy life, I read somewhere that we should be greatful for waking up in the morning there are may who do not.

Cheers

Isabel

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Hi Mermaidia11,

Antidepressants did not agree with me at all, I would never take them again. The only thing I have found helps my spasms is diazepam which I only take rarely, as it is addictive. I went to the Walton centre once, but now that diagnosis is not the right one and I still do not know what I have wrong with me. I feel depressed at times and I am always stressed it never goes. I thought I might go out a little more for fresh air, so I have just ordered a supascoota to take in taxi etc as it folds up small. My electric wheelchair is too big for car boots. Hope you can find something that helps you.

Best wishes Suzie

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Try the drug Clozepam. I have SCA 6 and it helps.

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Mine is bigger than yours..... My physio said I was also an inspiration, Like you I am positive. Once you have seen people having chemo I think I can do anything. I do Pilates everyday, my core is brilliant, I can stand now my wobble has gone, my fine motor's are better and my writing is better. I bought from Amazon Alen Menzies Lower back Pain DVD They said he would be in a wheel chair and now he's teaching. I worked for 25 years with SEN children, if you cant crochet get 2 plates with beads in and pinching 1st 2nd 3rd little finger with your thumb pick up the beads from one plate to the next. After 2 weeks he no longer had a tremor. its more manly Stephen.xx

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Hi Stephen,

That is really inspirational, I am going to look at doing pilates as well and will continue to crochet. Thank you for boosting my positivity.

best wishes

isabel

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Hi Isabelalfaiate, well done your blanket is beautiful, I like painting but have not done any in a while. I have cysts on my spine so sitting too long is agony, so I just do little bits at a time. I was tested for SCA3 but I did not have this, I do wish to be tested for SCA14, but it is getting doctors to listen. I find if is is a rare thing they don't wish to know sadly.

Best wishes

Suzie

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Can You give me your exercises please my email is marjoriefriesen@hotmaii.com

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Dear Suzie,

Be greatful you do not have SCA3, but I hope the doctors will be able to label whatever is wrong with you. I used to paint as well but have not done so in a while because at first I was very busy and now I find I do nost have a firm hand, but I am working on it.

Thank youBest wishes

Isabel

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Well done - I LOVE your posts. Thank you. Blanket is so good.

My writing comes and goes. I TRY to colour, have a handwriting book big sudoku, big word search and boggle is good too. I cannot draw and prefer 3D so clay is my thing.

I had a fall a few weeks ago but I am trying to regain stuff. This is a good push x

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Thank you Litty, I also love your posts. This is such a good support group. It is important not to give up but continue living.

best wishes

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Lol I forgot lego is a real challenge too x

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yes, it also keeps your brain working, I speak englih, afrikaans and portuguese and now I am learning French online to keep my brain active. I am a translator and do all the translations for the Court and a few freelance. This also helps to keep my brain active.

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Wow - interesting x

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Thank you so much for your kind words, When I did the Dyspraxia programme I used to explain to parents " Because your child's body is uncoordinated we make the left and right side coordinated and the body and brain work together

You have 2 sides of the brain one sees things as individual letters A<T<C and it jumps into the other side and they make CAT. If you don't co ordinate the body the brain still works like this and they got Dyslexia. That's why I do left/right exercises and I do agree keep your brain active (\I watch loads of quizzes) I have sent an email to Allan Menzies who I do my Pilates DVD from and he wrote back (SHOCK) to say thank you and my story of my success he wants to use as a tribunal on his website. I love going out with my walker because people are so kind and helpful. I tell good looking men there is nothing wrong with me I'm just attention seeking, and they laugh. I smile all the time because there is people worse off, We are proof lets all write something positive every- time we write.

I love your Blanket it's gorgeous....I shaved my legs today and cut my legs to shreds but the good thing is while looking for my plasters I found my camera xxxxxxxxxxxxxxxxxx I told my 2 year old granddaughter my glasses were mucky and 2 days later found them in the washing machine.

I

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