My sister gave up

[Mirabella113]

Hi everyone, I have a problem with my sister. I'm 32 and she's 41. We both

have SCA1 after our dad. I don't have any symptoms yet but my sister is really

bad. She's struggling to walk, her hands are shaking so bad that she barely

can hold anything. Her bladder is very weak. Overall she's very weak. But she

don't wanna do anything to make her feel better. I wanted to ask if there's

anything that could help her? Have you got any suggestions?

I'm a total opposite- I'm exercising regularly and since I have found out that

I'm ill I have changed my life.

Is anyone of you exercising? Is it helping?

[wildstyler]

Yes, I exercise regularly, you are doing exactly the right thing, try standing with one leg on a balance ball, I do this a few times a week , it will build up your core strength which will help. I have had this condition all my life ( which isn't over yet) and I am 68, Good luck.

[Mirabella113 in reply to wildstyler]

Thank you for your reply. For me that's not a problem but my sister can barely stand up. Her legs are so weak. She was doing some exercises when she had rehabilitation but I think that with this condition you have to have strong muscles and as you say - strong core to support the balance. The problem is that she don't wanna do anything because she's saying that the exercises will not help.

[wildstyler in reply to Mirabella113]

You can only advise her , but the most important thing is to take care of yourself. I go to the gym three times a week and run about three times a week, but I've always done some form of exercise, it must be hard to start exercising if you are not used to it. Exercising is the answer good luck with your sister.

[Amynah]

Hi,

I have SCA1 from my mother and THE ONLY WAY TO SLOW THE DEGRADATION IS EXERCISE - Please please convince your sister to do exercise. I do exercise for 30 minutes everyday - it is important to do something everyday - Walk, cycle, Hydrotherapy, arm bike. I must add if I miss exercise two days, then I am back to square one and can't walk without a walker.

Also for weak bladder she needs to do hip raises. After a month she will see the difference.

Good luck in convincing her - maybe you can get her counselling.

Ataxia is a illness that requires a lot of self motivation. You have a lot which is really good - Hope it rubs off on your sister.

[Mirabella113 in reply to Amynah]

Thank you for your reply. Can I ask how old you are and for how long have you got symptoms?

It's more difficult because my sister lives in Poland and I'm in the UK and I can't really do anything. Maybe if she will see that other people with Ataxia are exercising and it's helping I might be able to convince her.

She's coming to visit me in 2 weeks and I thought it's a perfect time to talk about it.

[Amynah]

Hi I am 51, I was diagnosed in 2010 December with Ataxia in 2015, they said it was SCA1.

My mother, who is dead, had ataxia, but we lived in Africa, so she was not diagnosed but she had all the symptoms I have and I used to care for her since she was 45.

One thing she did was exercise and she felt better for days - so she kept on doing exercises.

What surprises me is that when she died, she did all her personal care and walking at home - she only used a wheelchair when we went out.

This is what motivates me. I could not bear it if someone had to feed me or dress me.

The more exercise I do the more independence I keep!

[Mirabella113 in reply to Amynah]

Thank you so much for sharing that. It gives me even more motivation because I know that it really helps.

[isabelalfaiate in reply to Mirabella113]

Dear Mirabella 113,

Look at this site of Dr, Tom Clouse walkingwithataxia.com/ he will be in the UK in May/June I am not sure if it is near you, but I am sure if your sister reads all the info he has in site, it will give her an incentive to do something. I have been diagnosed with SCA 3 was told to get a wheelchair in 2009 but am still walking around (wobbling) un aided. Exercise has helped me and I was strongly positively influenced after reading walking with ataxia. I am 63 and my aim is to be independent for as long as possible.

Good luck with your sister and keep up your exercise routine.

Best wishes

[Mirabella113 in reply to isabelalfaiate]

Thank you. I will have a look.

[Litty]

I have SCA1 too. My older sister has in Australia (early 60s), I am in the UK (mid 50s) and we inherited off my Dad. It really helped because Dad exercised for years which I do but she is in a home and does not fight it though. To be honest you cannot really decide for your sister and so just do as much as you can for as long as you can. I use a walker in the house and wheelchair on family day outs.

I bike for 30mins doing 4 mins fast as I can then rest 3mins and repeat. Do 3 times week and weights on other days. I walk slowly around the woods with a converted big wheeled baby walker for balance.

Good luck and TRY not to worry. It is her choice.I would take trealose. I also watched this and am trying bits.

Good luck and TRY not to worry. It is her choice.

youtube.com/watch?v=KLjgBLw...(Not working as expected?)

[JP66 in reply to Litty]

Litty, Thanks so much for that link! I had not seen Dr. Wahls before and the funny thing is my diet is close to what she is recommending and really has been for quite some time.

Mirabella, I hope you will take a few moments and look over some of my posts. I have links to a great deal of research. You should never try anything before consulting your doctor, but having said that I will add that I believe the research on trehalose, Niagen, and now coconut oil is all very interesting. Trehalose might help clean out the toxic proteins from the brains of patients with SCA1, Niagen which is a form of vitamin B3 might help your brain's cells repair themselves, and coconut oil might help your brain send messages more efficiently. Maybe the combination of supplements could be helpful to someone with SCA1. I definitely think it is worth talking to a doctor about it. Especially for someone like yourself who doesn't yet have symptoms, but as everyone above has pointed out exercise is a great place to start and most definitely key to staying healthy!

Joe

[Litty in reply to JP66]

Yes luckily our diet is not too far from hers. We have no gluten because my daughter is celiac! Not too much dairy cos daughter’s boyfriend who lives with us is allergic! (Such a healthy lot) Love chocolate (my downfall!).

Very lucky and used to have a vege/fruit box from local farm delivered and we made juice, so I am restarting. Decided not to be too stict but follow it more.

This is a good summary sheet for fridge - I am very visual and I like it

terrywahls.com/Cheat/

[Mirabella113 in reply to JP66]

Thank you.

[Litty in reply to Litty]

lol - my memory is hopeless! When I remember I take 600 Ubiquinol (new form Co Q10) and I think it helps?

Joe got us onto Niagen which I take and his family that have SCA1 swear by but unfortunately does not seem to work for me. I do take coconut oil - who knows if it helps??

Trehalose (if you can afford it. they all add up) can only help though I get it from here trehalose.co.uk.

You unfortunately need to find out what does and does not work for you, we are all so different. Joes's posts are excellent though : )

[Litty in reply to Litty]

Lol- sorry hopeless - just remembered the most useful advice I have had.

I do not do talking about my problems (my husband has found it wonderful). A few years ago we had to have a few family sessions after a very inappropriate video about genetics was shown to our daughter during a biology lesson.

Anyway I was not properly aware how guilty I was feeling about my sister. Our lovely phycologist told me we were grown-ups now and she was not my problem any more. It really helped me to just contact her enough for me.

[Mirabella113 in reply to Litty]

That's a really good advice. But it's so hard. Our dad died 2 years ago and he couldn't do anything not even speak. He wasn't doing anything to help himself. My dad had my mum but my sister don't have a husband or children. When our mum will be gone she will be alone in Poland. And when I see how she is letting the illness take control I'm getting so angry.

[Litty in reply to Mirabella113]

Unfortunately the rest of your family do not sound very inspiring!

It is hard, I know because my sister has no family out in Australia but it is their decision. You need to try and focus on your life. Hard but necessary. We are all grown-ups now.

Good luck x

[Mirabella113 in reply to Litty]

I will definitely watch it. Thank you

[february]

Dear Jp66, Would Trehalose, Niagen and coconut oil possibly help if one has Sporadic (idiopathic) Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7), as this is what I was diagnosed with? I've heard and read that it may be helpful for the SCA's, but am unclear on my type of ataxia. All the genetic testing I've had (including exome) has either been negative or inconclusive for the dominant and recessive ataxia's. Thank you..., ;o)