My first year with SCA7: Pilates, CBD oil and reading

[C2a2o2]

I'm 29, was diagnosed with ataxia nearly a year ago and am fighting every day. I wanted to share what I am doing to fight this.

As soon as I got my diagnosis, I looked into Pilates. My doctor weren't very helpful in this regard and basically said I could do exercise if I wanted but it wouldn't make much of a difference! She was completely wrong and I think that exercise is the most important part of fighting ataxia.

The Pilates studio that I go to is brilliant. Before I started they researched my condition and they know my restrictions but that doesn't stop them pushing me to do my best and to get better at everything. I now go 4 times a week and I feel better and stronger than I have in so long.

Around the time I was diagnosed I noticed a trembling in my hands, particularly at night. This was probably also due in part to anxiety. I researched online and decided to try CBD oil as lots of people with MS use it. I found CDB oil helped immediately.

I'm not exaggerating when I say I could feel it working the first day. I now have zero tremor. I do think that if I wasn't taking CBD I would have had to ask for some anti-tremor medication and I much prefer the natural route.

I also bought CDB-infused muscle gel. I've only used it a few times but I'm hopeful it will be good when my legs feel tired and stiff.

My speech has been affected and has gotten noticeably slurry in the past few months. I really hate this part of ataxia as as an Irish person living in London, I'm already a bit paranoid about speaking clearly. I also talked very quickly (an Irish thing). I've tried to slow down when I speak. A speech therapist I saw recommended reading out loud everyday and I think it is definitely making a difference already (I only started a few weeks ago). I now read slowly, loudly and enunciate every day. I love reading so this is a bonus

I'm doing everything I can to fight this and reading the inspirational posts in this group is a big help.

[Hidden]

Hi C2, thank you for your recommendations can I please ask where u get CBD oil, I am reluctant to buy online..

[C2a2o2 in reply to Hidden]

I buy online. I originally bought from cbdoilsuk.com/ and I now buy from Amazon. CBD Oils UK are a very reputable company if you would prefer not to buy through Amazon.

[BlanketTime1 in reply to C2a2o2]

if you are in the states, I buy from cbdmd.com. they have vaping additives and gluten free, non gmo, third-party tested products.

[Kalikang]

Hiya c2a2o2, I am 39 years old and have also been diagnosed with sca7. All your recommendations are really helpful. I think that meeting someone else with sca7 could help both of us.

Kali

[C2a2o2 in reply to Kalikang]

Where are you based? I'm in south London.

[Kalikang in reply to C2a2o2]

I live in derby

[C2a2o2 in reply to Kalikang]

Feel free to chat me here

[Kalikang]

Do you speak with anyone else who has sca7?

[C2a2o2 in reply to Kalikang]

No not yet, I have attended the London Ataxia group but SCA3 seems to be the most common. As far as I can tell, my poor eyesight is the main difference but I have been very shortsighted since I was 20 so it doesn't really get to me anymore.

[Kalikang in reply to C2a2o2]

I went to the ataxia conference e at east Midlands airport last month within the conference I went to a session on physio and how it can help ataxia because I'm getting severe cramps in my legs. I'm partially sighted so sometimes my texting van go a bit wrong. I walk with a 4 wheeled walker. I used to walk without it but I was having to hold on to everything and I was having falls. Do you use an aid to help

[C2a2o2 in reply to Kalikang]

No, I'm fully mobile at the moment and with strong glasses, I can work and live with my visual impairment. I find that exercise helps my legs from cramping but if I stop exercise for a few weeks then they get worse again.

[Kalikang in reply to C2a2o2]

I've got a treadmill at home as long as I've got something to hold on to I'm fine.

Are there other members in your family with the condition in my family my mum sister and uncle have it. I also have 3 children

[C2a2o2 in reply to Kalikang]

My sister might have it but we're not sure yet. No older family members do, thankfully. A treadmill is a great idea!

[wildstyler]

You have precisely the right attitude. I am 70 years old and, although I don't do Pilates, I go to the gym three times a week and ride my mountain bike three times per week.

Keep it up

[Jacqui-A in reply to wildstyler]

Are you able to keep your balance on a mountain bike? Also do you use a treadmill at the gym?

[wildstyler in reply to Jacqui-A]

I find the bike the best thing ever for my balance, as for the treadmill, although I do use it, I am not very keen on it, I previously used to run quite regularly, and we have a couple of springer dogs that we used to run with, so now they run behind the bike,so although I might have had to change things, I haven't had to stop them.

Your doctor is completely wrong, exercise might not cure it but it might slow it down. The only thing worse than losing the fight, is not bothering to fight in the first place.

Use it,

Or lose it.

Good luck

Kevin

[Jacqui-A in reply to wildstyler]

Thanks for that, very helpful

[swtb]

I am so glad that you wrote about Exercise. It is extremely important and I just found that out by increasing my long distance walks. Diagnosed wi CA 5 yrs ago & thot that I was doing enuf walking my dog a mile daily. But everything wi CA that was going south has gotten so much better since I increased my walks long distance. I get a little wobbly & weak twd the end but wi my dog & my cane I found that its getting easier to go farther.

You're right on, and sunvox said Excercise is KEY. Thank you for sharing.

[sunvox]

I have posted an enormous amount of research on this forum including a detailed explanation of my own alternative therapy and what science says about each element. I suggest clicking on my online name or avatar(picture) to see a link to all my posts. Perhaps something I have researched or am doing will prove helpful to some of you.

-

Joe in NY

[BlanketTime1]

I commend you. I understand doctors don't know much, but I was also told physical activity wouldn't help me (as in just take the pills, lol)… I started doing a very dated, but gently challenging and effective workout called callanetics that focuses mostly on stretching (really good for my dystonia) and gently strengthening muscles. I've noticed a huge difference in about two months with my leg strength and lessened pain in my neck and arms. keep up the good work!

[chelpet]

I’ve been attending a Pilates class weekly for 2 years now. The class and the teacher, the exercises and the learning, is fantastic. I couldn’t recommend it more highly! It’s benefited me in so many ways, physically and emotionally, and the class is both FUN and very challenging. Peter