I’m wondering if it’s a rational approach for Ataxians to ‘forget’ about drugs and medications for a while, and instead focus on the various therapies available, physio, speech, mindfulness , etc. and work out programs for ourselves (with the aid of consultants, researchers, etc), in order to manage the Ataxia symptoms that blight and limit our lives.
chelpet
🙂 I’ve resisted medications so far..Don’t get me wrong, I do have symptoms that might ‘benefit’ but I tend to consider the side effects
🙂 Any therapy that you find enhances a feeling of wellbeing is well worth pursuing
Agree totally with your use of the word ‘wellbeing.
I also think that it can be extremely beneficial to take a very ‘holistic’ approach to dealing with and getting ‘on top of’ the Ataxia symptoms, whether they involve one’s speech, physical balance, co-ordination and dexterity, cognitive issues, mental health, whatever.
I’ve got nothing against drugs. But from the reports I hear, it is going to take a number of years until they are proved effective and become available. In the meantime......
chelpet
hi, I spend my time doing things I can do. I have found speech therapy very helpful and have some daily exercises to help. I have set Winston Churchill up as my exemplar. To speak slowly and clearly. I have a lot of stories/jokes and spend time recording them on my phone using a free recorder app, which allows me to upload them to my Dropbox. From there I take them into my pc for sorting.
I have always enjoyed diy, but this is no longer safe for me. I have taken up wood carving and have 4 animals to paint for my 4 grandchildren. A crocodile, a tiger, a cat and a giraffe. Finished carving them today.
I have grown bonsai trees for nearly 50 years and although I need help to move them have a couple of new projects planned for warmer weather.
I go to the gym 3 x a week (mostly to frighten fitter people into better habits)! I agree with you about our focus away from drugs and towards life enhancing activities or therapies. The drugs I do take are to deal with old age problems such as blood thinning, cholesterol and blood pressure. Everything else is aimed at living a full life despite ataxia.
Happy Xmas. Nigel
I’ve also resisted medications so far. I have been ‘offered’ them and will take, but when I have few other options. I have experience of physiotherapy working miracles but mostly I just do 10 minutes of ‘core’ exercises daily as recommended by the physiotherapist and have a static bike in the garage which I only use for 40 minutes every other day, due to fatigue. I do miss days out, but am far more ‘staggery’ if I do.
thoroughly recommended. exercise is vital plus have a paperwork to follow exercise at home for widening gait, balancing safely and others.precovid 2018 once a week in hospital.learned how to work walker, big step. going down and up. recently wld have an issue with a taxi.in the end didn't...vits esp. of b sort...good food homemade.that is a physio itself...and keep POSITIVE ACTIVE MIND. that is no.1.Good luck slower progression.
This has to be the most beneficial topic posted that I’ve read and even better are the replies. In my opinion, for every benefit we can get from a medication there seems to be at least 10 negative side affects. It’s always listed on the side of the bottle so why would we take them if it means going ten steps in the other direction.
As one comment stated “keep a positive active mind”. Now let’s go stir up some fitness people at the gym!
Hi interesting to read the comments on drugs. I only take 3 a day related to my Ataxia, baclofen 10 mg twice a day and solifenacin 5 mg to reduce bladder urgency. Contrary to what others have said I find these two drugs really help me. The baclofen helps greatly for leg muscle stiffness and the solifenacin helps too. Without it I was getting up about 6x a night to use the loo. Now it's about 2-3x.
I do have a daily exercise routine a minute on a balance board with eyes closed, calf raises x30, squats x100, hip flexor strengthing as the Ataxic gate strains the weak hip muscles. Core exercises in the form of a plank for 3.5 minutes and a rowing machine used vigorously for 30 minutes. These I do every weekday. I've also had lots of sessions of neuro physio and the instructors are always really impressed with the results. But even with all this I still fall once or twice a week. I just wonder how I'd be now with no exercise? I was diagnosed with Ataxia in 2004 at 36, now I'm 54.
Merry Christmas to all of you and keep your chin up.
Have been part of research studies whether exercise was useful for Ataxia. The intensity of exercise was so demanding that people dropped out because it took some much time for so little benefit. They had better things to do with their life
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