I go to see my neurologist in a couple of months (first appt I could get) to discuss treatment options. From what I've read online, there aren't a lot, it's mostly management. Anyone got any ideas whether this is likely to be true?
I am learning tai chi and am having hydrotherapy with appropriate exercise, and both have helped the balance issues to an extent. Nothing seems to improve the co-ordination, I'm thinking of changing my name to Lurch!
I use a walking stick outside of the house, both to assist my balance, and I am less likely to take off sideways, and also as a warning to others that his lady has crazy walking movements! I am also taking note of my sister, who is 11 years older than me, and also has SCA type 6 (though it manifests slightly differently to mine), and watching how she copes.
No treatment options is correct. Management only. Eat well, exercise to your capacity, YOGA!
I think if we use common sense we can ask the Doctor if they could explain what can be done and then let us do it on our own,The doctors would like you paying them for things that are not helping or we could at no cost. Jerry
I agree with Jonas! Although I do not have SCA6 (I have Sporadic Cerebellar Ataxia), mine effects my gait/balance, dexterity, speech, and swallowing. I exercise for strength and balance most days , as well as stretches. As a rule, I use a cane and/or trekking poles when I leave my home to prevent falls, and so far so good! Thus far, I'm able to walk, carefully, in my home without it I take pleasure walks with an Access Active Rollator. I LOVE it, as I feel very safe and secure! My neurologist has told me to stay as strong as possible, and be as active, safely, as possible. I've done pt and will do aquatic therapy soon, as that helps me. I find the more I exercise and go for walks, the easier it gets! I do rest when tired...,ha! My best to you...,;o)
Yes, Jonas, already doing the eating bit. Eating as sensibly as I can. I do an hour's exercise each day on the treadmill exercise bike, and the hydrotherapy and tai chi. Hadn't thought of yoga!
Thank you!
Jonas Cepkauskas said:
No treatment options is correct. Management only. Eat well, exercise to your capacity, YOGA!
I've been doing it on my own so far, Jerry, and I expect to continue that way. I see the neurologist every three months for treatment (which I'm very happy with) for cervical dystonia. I'm hoping as far as that goes things continue. At this stage I want information, so I can be prepared!
gelu65 said:
I think if we use common sense we can ask the Doctor if they could explain what can be done and then let us do it on our own,The doctors would like you paying them for things that are not helping or we could at no cost. Jerry
One of the reasons I'm doing hydrotherapy (aquatic therapy) is so that I am able to walk (enjoyably) outside the house. I don't mind needing a walking stick to do it, just so I can do it without it being a lesson in concentration. In my pre SCA6/cervical dystonia days I used to walk the dogs every day and loved doing it, I really miss not walking. It was physical exercise and therapy for my soul as well. I expect to need a rollater at some stage, and as far as I'm concerned, I'll use whatever I need to keep myself mobile!
My sons have suggested a mobility scooter, and I will definitely do that if I need to. I visited a friend in the UK around 18 months ago, and used his. It was very helpful.
Rose, do you have speech therapy, and how do you manage the swallowing difficulties?
rose said:
I agree with Jonas! Although I do not have SCA6 (I have Sporadic Cerebellar Ataxia), mine effects my gait/balance, dexterity, speech, and swallowing. I exercise for strength and balance most days , as well as stretches. As a rule, I use a cane and/or trekking poles when I leave my home to prevent falls, and so far so good! Thus far, I'm able to walk, carefully, in my home without it I take pleasure walks with an Access Active Rollator. I LOVE it, as I feel very safe and secure! My neurologist has told me to stay as strong as possible, and be as active, safely, as possible. I've done pt and will do aquatic therapy soon, as that helps me. I find the more I exercise and go for walks, the easier it gets! I do rest when tired...,ha! My best to you...,;o)
Magrat I believe I have cervical distonia, since I had a neck operation I get spasms that pull all my tendons and musclesand twists my neck to the left and it is painful. When it first started it was very paiful and embarassing as I would moan or make noises and got some nasty comments but they got less painfull thankfully, now they have been wakeing me up ever time I need to roll over so I was thinking about asking if botox would be able to help.
I would definitely ask, Jerry. They use botox for a lot of conditions, and it sounds as though it would help.
I found the pain of cervical dystonia excuciating.
you might want to try a Paleo/Gluten-Free diet and eliminate all grains through an Elimination Diet (you can Google this). It has helped me a lot. If I eat grains or sugar I wobble more.
Thanks Judita. I discovered, probably 20 years ago that I had a sensitivity to wheat, and to rye. I'm not on a strict gluten free diet, but very restricted. This was before the cervical dystonia started, and the ataxia. Lord knows what I'd be like if I had a lot of wheat/rye!
magrat, Glad you are on a restricted diet.
I still advise doing an elimination diet for all grains and cross grains. I think you will be amazed at the results! Also try eliminating diary and eggs with the elimination diet. You have nothing to lose except any cravings and will save any testing costs.
Dear Magrat, I only see a speech therapist yearly at this point. She suggested practicing saying the alphabet, counting numbers, saying the months of the year out loud, slowly, to help with slurred speech. She said to speak more slowly as a rule. For swallowing, she suggested throughly cutting up food (sometimes I have my husband help with that, as my dexterity is compromised), taking small bites, eating slowly and taking small sips of water in between bites. Also, when drinking, she said to first take a sip, bend neck forward, dropping chin down to chest, then swallow, as that opens things up. This all is pretty logical stuff, but really helps me! ;o)
Thank you Judita.
Judita said:
magrat, Glad you are on a restricted diet.
I still advise doing an elimination diet for all grains and cross grains. I think you will be amazed at the results! Also try eliminating diary and eggs with the elimination diet. You have nothing to lose except any cravings and will save any testing costs.
Thank you Rosa.
rose said:
Dear Magrat, I only see a speech therapist yearly at this point. She suggested practicing saying the alphabet, counting numbers, saying the months of the year out loud, slowly, to help with slurred speech. She said to speak more slowly as a rule. For swallowing, she suggested throughly cutting up food (sometimes I have my husband help with that, as my dexterity is compromised), taking small bites, eating slowly and taking small sips of water in between bites. Also, when drinking, she said to first take a sip, bend neck forward, dropping chin down to chest, then swallow, as that opens things up. This all is pretty logical stuff, but really helps me! ;o)