Here is my situation during this time of my ataxia. I have come to realize I must use a wheel chair. With my rollator my balance is bad
I see the changes as soon as I get up in the morning. Lately they seem to happen over night. This concerns me because in one night both hands have become stiff and to feel with my fingers has come on strong where I cannot feel. The following week my balance has worsened causing meto fall and making me realize I needed a wheel chair.
I now use a wheelchair for my safety.
Now, here is my problem. I am the type who wants to know what will be next! Will I get weak or strength or lose my voice. Or am I better off to pray for myself to fall asleep and be done with this mess and not become the burden I pray not to be.
I know I should be strong but I am scared how fast this has progressed this last month.
I just have no idea what happens next. Is there anyone who may have any idea what is my next step to take place?
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4Heavenly
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i'm not certain, which is one of the most frightening things about ataxia. do you know which type you have? have the doctors explained a sort of 'general' progression? i'm glad you knew when it was time to use your wheelchair as falls can be very damaging. in my opinion, doing what's best for you is strong. I, too, have days when I just want it to be over already. it's exhausting being sick and uncertain all of the time. you are in my thoughts and I hope you get some answers soon. stay strong.
My aunt has ataxia as do I. She is 74 years old and taking a combination of Niagen, Pterostilbene, Taurine, Theracurmin, Thiamine, and EGCG. She also gets physical therapy 3 times a week. She stopped using a walker last year. Just saying.
Hi Joe, I realise everyone is different and the supplements may not work on everyone but I have bought them in the hope they will work for me. Could you tell me what timescale for them to work. Also is mannitol important and if so where did you get it please Jacqui
Hi Jacqui - In my experience people who felt a change felt such after about 6-8 weeks, but as I have said many times it is important to understand the limit of these alternative therapies. They can not reverse damage, but hopefully they can work together to SLOW progression. Also, I do not believe a person can take the supplements and not exercise and eat right and expect a benefit. By exercise I mean any activity whether walking, cycling, swimming, dancing or whatever plus some type of stretching and weight training all of which is best done under the guidance of a helpful doctor interested in holistic medicine and individual treatment. (Obviously from my other posts I believe running on a treadmill is best, but I know not everyone is up to that level of exercise.)
As to mannitol, I buy it on Amazon from the same company that makes trehalose namely Bulk Supplements. In theory based on the animal research mannitol is doing the same thing that trehalose is doing. As has been pointed out by the Admins there is no human research supporting oral ingestion of trehalose or mannitol for treatment of Ataxia, but to me the reports of patients in the CliniCrowd study are convincing enough. Given that trehalose and mannitol are acting in theory in the same manner, I do not think it is important to take both. A TBs a day of trehalose or a tsp a day of mannitol, it probably doesn't matter which one tries. If I had to pick one or the other I'd pick mannitol only because of the CliniCrowd evidence.
I hope you will keep us all informed on any changes or lack there of that you feel
Hi Joe - Thank you for the info. I live in U.K. And unfortunately they don't ship here. I have bought trehalose so will use that. I look forward to the spring when hopefully I should feel the benefits. Treadmill is on the way. Happy New Year Jacqui
so happy to hear this is working for her, however I have had everyone tell me to never count on any medications to work. so I refuse to play that game. Thanks for the thought though. Good Luck P.S. I worked for a repackaging place for medications. People buy whatever doctors will given them. I've been told to not be a part of this pill game. They have not come up with a cure. It may not be in my life time to see a cure but at least I can refuse popping way to many pills.
so true . Death is not my option at this time but only God knows when I will---------------------------------------------------------------------------------------------------------------
My advice is to find out the nearest Ataxia Centre where you will find the answers to most of your questions as well as support. My advice is for you to be as active as you can for as long as you can. Good luck.
I was told that although the condition progresses linearly, the effects on the body are stepped. So one day you may be able to something, the next day you are unable to do it, but then it may be months before there is something else you can't do.
I've had ataxia over 20 years, as it's progressed slowly. I use a cane and sometimes a rollator, depending! I don't think anyone can predict how progression will be, as everyone is different. It's human nature to want to know what the future holds though! I try to keep moving the best I can and exercise (safely, of course...,ha!) for strength and balance (you can even do exercise's while sitting down). Also, eat as healthy as possible. My best to you..., ;o)
I know it is a devastating condition, I am watching my son and my husband suffer with it but what is the only choice we have?
Fight or give in.
I choose to fight because my son has always been a fighter.
Sunvox, I am very pleased you shared the list of medication as Ryan's neurologist (we live in England) won't consider prescribing him anything and thinks exercising or supplements or anything else is a complete waste of time.
When I asked him a direct question: "If this happened to your child what would you do?" and he told us that he wouldn't waste any energy on looking for a cure as there won't be one available in time to save his life!
Well, that made me determined to find someone else who actually wants to help my boys and has the necessary knowledge and strive to do so!
So, if anyone knows of a great neurologist who is forward thinking and willing to research and try new treatments please point me in the right direction.
I would advise you to get a referral to one of the ataxia centres in the uk. They are run by professors who are at the very top of ataxia & run by Ataxia UK. One of the professors-Professor Hadjivassilliou was the one who found & diagnosed gluten Ataxia & ppl come from all over the world to see these drs. No one can tell what the future holds as each individual & the ataxia they have are totally different & no 2 ppl-even with the same type of ataxia will be the same. I’m not 💯 certain if you can refer yourself.
I'm sorry to hear your ataxia has progressed so rapidly recently. I know it's frightening when that happens. My only advice is to do whatever form of exercise you can, as often as you can, and eat healthily. As for being a "burden", I'm sure the people around you care and love you. They still enjoy your company. You may feel a "burden", but I'm sure they don't see you that way. I felt like that for years and it really got me down. I found counselling helped. If you are in the UK, then see if there's an ataxia group nearby that you could go to, and people seem to think that the ataxia centres are great - I live in France so have no first hand experience of them, so maybe you could get an appointment at one of them.
Hello 4 Heavenly, How blessed you have made me feel, I have just found your post, and your story , I thought it was mine you were writing !!!," I" with yourself seem to be the same, and I thought it terrible that I could no longer do housework ( Just manage to do some dishes, as Long as a chair is behind me )
I worried that family or friends would think I was exaggerating, becoming Lazy !!!! Oh OUR GOD BLESS YOU AND KEEP YOU, as we Battle on with ATAXIA, and Osteoporosis, never thought my walking freely days would be over , as I was an "Addicted" Walker, just loved it, walked Miles , and still felt it was not enough !!! oh well, at least I had years of being blessed with walking up the hills with my friend, and as we walked in the country , or up the hills and down, with all the beautiful scenery, we always sang the Hymn . HOW GREAT THOU ART -- Happy days -- stay safe GOD Bless, Love , Lottiejemma x
Hi,had to reply to your post,i also loved walking,i used to walk for miles just for the pure enjoyment so having Ataxia has taken that away as it has for you and i miss it so much. The hymn How Great Thou Art is my all time favourite hymn,i loved the words they always move me to tears. Take care.....
I totally understand. Is there a chance of getting a scooter run off battery to get you out moving? I have one to go around town. Gets me out. May the Grace of
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