SCA3

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Permalink Reply by Marie Turner on February 6, 2012 at 9:14am

HI Reg

My husband feels similar. I think its sometimes harder for our loved ones.I watched my father suffer with Parkinsons and I have Cerebellar Ataxia myself.I do sometimes get the odd bad day but you are giving your wife what she needs and that is love.That's what keeps me going.Many are handicapped in their relationships which in my opinion is worse than physical disease. What helps me is knowing I have a companion who will take me to support groups and try to make life a bit easier by valuing my hobbies and trying to do everythinhg in his power to see me enjoy them.Knowing you areloved is rare   and it really helps to know someone is on our side.

Marie

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Permalink Reply by Jess on February 6, 2012 at 11:10am

Dear Marie 
Thank you so much ...what you said as helped me immensely.i do love her but feel so helpless as I see the illness slowly take hold.I worry if for any reason I am not here,later on in life to help her and care for Jess..We are doing things whilst she is mobile ,I maybe rushing things to get done before she is wheelchair bound ..walk in the park restaurant etc... Is that, do you think for my own selfish reason ...she never complains and but does get tired so quickly .

Marie Turner said:

HI Reg

My husband feels similar. I think its sometimes harder for our loved ones.I watched my father suffer with Parkinsons and I have Cerebellar Ataxia myself.I do sometimes get the odd bad day but you are giving your wife what she needs and that is love.That's what keeps me going.Many are handicapped in their relationships which in my opinion is worse than physical disease. What helps me is knowing I have a companion who will take me to support groups and try to make life a bit easier by valuing my hobbies and trying to do everythinhg in his power to see me enjoy them.Knowing you areloved is rare   and it really helps to know someone is on our side.

Marie

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Permalink Reply by Patsy on February 6, 2012 at 11:16am

Hi Reg - I completely agree with Marie - having someone who loves and cares for you is wonderful and Jess is very lucky that you care so much.

Personally, I need lots of encouragement to get on with life - it would be easy to sit back and let Ken look after me but I would get depressed.  Also it is very important to keep body working - you know the saying use it or lose it - applies both to brain and body.

I run a local support group which is therapy for me and I get involved with local disabled groups to a minor extent - cant take on too much commitment as it scares me and then I get anxiety attacks.

Tell Jess to remember to smile - not something we do naturally whilst concentrating on not falling over. :)

Wii fit exercise is good - have you considered that?  Good for sharing.

Good luck and take care, Patsy :)

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Permalink Reply by Jess on February 6, 2012 at 11:25am

Dear Patsy 
I am very grateful for your advice and support .i was thinking of takin my wife swimming and doing other activities that she may be able to do relatively easily ..thanking you 
Reg 

Patsy said:

Hi Reg - I completely agree with Marie - having someone who loves and cares for you is wonderful and Jess is very lucky that you care so much.

Personally, I need lots of encouragement to get on with life - it would be easy to sit back and let Ken look after me but I would get depressed.  Also it is very important to keep body working - you know the saying use it or lose it - applies both to brain and body.

I run a local support group which is therapy for me and I get involved with local disabled groups to a minor extent - cant take on too much commitment as it scares me and then I get anxiety attacks.

Tell Jess to remember to smile - not something we do naturally whilst concentrating on not falling over. :)

Wii fit exercise is good - have you considered that?  Good for sharing.

Good luck and take care, Patsy :)

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Permalink Reply by Patsy on February 6, 2012 at 11:29am

sounds great idea - let us know how you get on - obviously need to play it by ear -personally I dont like getting undressed, getting wet and dried again and terrified of walking by the edge BUT..  have seen several people on here who love to swim and enjoy the benefits.  Others like horse riding -   

Patsy

Jess said:

Dear Patsy 
I am very grateful for your advice and support .i was thinking of takin my wife swimming and doing other activities that she may be able to do relatively easily ..thanking you 
Reg 

Patsy said:

Hi Reg - I completely agree with Marie - having someone who loves and cares for you is wonderful and Jess is very lucky that you care so much.

Personally, I need lots of encouragement to get on with life - it would be easy to sit back and let Ken look after me but I would get depressed.  Also it is very important to keep body working - you know the saying use it or lose it - applies both to brain and body.

I run a local support group which is therapy for me and I get involved with local disabled groups to a minor extent - cant take on too much commitment as it scares me and then I get anxiety attacks.

Tell Jess to remember to smile - not something we do naturally whilst concentrating on not falling over. :)

Wii fit exercise is good - have you considered that?  Good for sharing.

Good luck and take care, Patsy :)

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Permalink Reply by Marie Turner on February 6, 2012 at 2:27pm

HI Reg

I used to go swimming but I agree with Patsy .I didn't enjoy the paalva of getting dressed and undressed.

I do know what you jmean about mobility.We would like to go round New Zealand in a motor van but as my husband still works(self employed) we would lose a lot of money.I am quite happy just being at home as the surroundings are familiar and Iknow where I can furniture walk safely.Also I love being in my garden.It is not I think the quantity of life but the quality. You have got something very precious . Hang on in there and enjoy the moment.

I would much rather have a physical illness anyday as people are usually very kind.They don't understand mental illness and to lose your thinking must be awful.My mother has advanced alzheimers and I am thankful I haven't got that.my husband and i do lots of things together  .I plan the garden and he does the heavy mantenance work.I can still make choices even if speaking is difficult .I try not to look to hard at what i cannot do now.There is so much to do in my future but I have got the privilege of someone to share it all.

Marie

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Permalink Reply by Jess on February 6, 2012 at 3:42pm

Hi Marie & Patsy

I saw this whilst researching SCA3 ...do you no anybody thats tried coenzyme Q10 and what effect did it have on the patient
Spinocerebellar ataxia can lead to disability. Some clinical studies have shown that high dose coenzyme Q10 (300mg or more a day) can help restore body functions in some patients, and slows down the progression of the disease. Considering the relatively low cost of this nutritional supplement and the potential health benefits, I think this is well worth a try.

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Permalink Reply by Patsy on February 6, 2012 at 3:53pm

yes I do take it and havent needed to sleep  so much in the daytime.

Patsy

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Permalink Reply by Jess on February 6, 2012 at 4:37pm

Hey patsy apart from not sleeping during the daytime any other benefits and is it vitamins tablets
Thank you
Reg

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Permalink Reply by Patsy on February 7, 2012 at 1:43am

Yes Reg  buy online with my other vitamins from Natures Best - have also been prescribed baclofen for muscle relaxant - half a tablet in the late afternoon.  I can now sit and relax after lunch without sleeping for a long time.  

I also take multi vits minerals plus multi b's, vit c and various others as and when necessary.  Have taken vits since I was approaching 40 and am 69 now.  My cerebellar ataxia was diagnosed in my late 50's but no know cause.  

The best advice I was given at the beginning was to use a walking stick and join a support group - there wasnt a group here but Tina at Ataxia UK helped me to start one.  Also I had my car converted to hand controls - and that was a great benefit.

Best wishes,

Patsy 

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Permalink Reply by Jess on February 7, 2012 at 2:33am

Hi Patsy & Michael
Thank you for your advice, I see Micahel takes 200mg of CQ10, I see there are various grams of this vitamin, what is the correct dosage for my wife. How would I know if it is to low or to high the dosage for it to make it effective. I know both of you said it made a difference for you Patsy made you sleep less and Michael said it has benefited him was there any other benefits you both noticed

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Permalink Reply by Patsy on February 7, 2012 at 2:41am

My CA symptoms are relatively mild - I only take 30mg - could be psychological benefit - not aware of any other benefits but of course if one has more energy for longer, it makes a big difference.

Patsy

 

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