Please share your story with the community…I am new here, I am not the patient, i am the husband of the patient, mentioned above her name Jess, i love my wife dearly and watch has the disease slowly reduces the quality of life she once had. I am helpless and feel unable as her husband to look after her, as i promised nearly 30yrs ago. I was fortunate to have known her 34yrs and i am still very much in love. I am looking for guidance n support and what it is i can do to help my wife to ease her passage with the illness. I am 50 years old and my wife is 48years old. We have never seeked help or guidance as we have been denying the illness up until now. She has SCA3 (MJD) diagnosed 1years ago. She has problems with pains in her head, dizziness, and lack of balance and sometimes stumbles and falls. Her gate is not what it should be, slowly progressive clumsiness in the arms and legs, difficulty on occasion with speech, impaired eye movements sometimes accompanied by blurred vision. I see the changes in her daily. My mother in law had ataxia and recently passed away. my wife’s both brothers have ataxia but her older sister by grace of god is free from the illness We are worried about our two children. My wife will explain when she eventually joins the discussion. I here there are on-going clinical trials and researches in the US n South America but none in the UK from other forum and Ataxia UK I have joined.Please help me to help my dear wife, it hurts and pains me to see her suffer so.Thank youReg
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
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
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 :)
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
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 :)
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
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.
yes I do take it and havent needed to sleep so much in the daytime.
Patsy
Hey patsy apart from not sleeping during the daytime any other benefits and is it vitamins tablets
Thank you
Reg
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
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
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
I take 200mg a day because I read about it on the internet.I also take one talet of Omega 3 and B12 and a vit E tablet.
I don't know if they help my ataxia or not but I feel fit and my immune system must be better.I did notice taking vit E helped years ago.It stopped the feeling of being pushed.The neurosurgeons were interested in this as they were going to test vit E levels but I was already taking it. Don't feel tired but i ca n't walk or talk at all in the evenings.I am much better when my brain has had a good rest in the mornings.I think a healthy diet is good and benefits the whole of the body.I am 52 and have had ca of unknown cause for four years now.The progression is there but I don't feel unhappy with it-more frustration.I have resigned myself now to what is not what was and this has made a differen ce.
Marie
Dear Patsy&Marie
Thank you so so much … What dosage do you think I should start my wife on and is the immediate signs or is it more in time you see visible signs to see its working.i really do aprecatiate and am relieved in what I feel within myself knowing there are wonderful friends out there to help and support and guide me through this maze . Thank you
Always happy to support Reg but unfortuantely cannot advise you on dosage - perhaps you could get advice from supplier
for example http://www.naturesbest.co.uk/ or perhaps contact Ataxia UK Helpline who have qualified advisors.
My own GP did recommend trying it some time ago but wouldnt give me a prescription - couldnt afford to buy it then but... anything is worth trying so am now trying it. Nature's Best do give free trial sometimes - worth asking.
I felt less sleepy during the day after the first week but as I say, it could be psychological - I am sure whatever you do, exercise will be most beneficial as a preventative rather than a cure.
Best wishes, Patsy
Reg,
I cannot imagine how you feel, although I imagine my husband may feel similar. Although I know he is finding it hard with little to no information or support in regards to my condition. We are due to celebrate our third anniversary next week so don't have the years of experience you and your wife have. But I know it is challenging to explain or portray my difficulties to him. I have only been suffering these problems around a year so this is all quite new to me, but I am similar to your wife as I suffers pains in my head (which are worsened by concentrating or tiredness), lack of balance and co-ordination, I have a wide unstable gait and suffer periods of shakes, my speech can become slurred and my eye are sluggish. I am also in UK and we have found it hard to get any support or info with the matter, this is considering that both of my sister-in-laws have cerebellum ataxia. x
Hey Nicolee
Like your husband I was scared, but we both forget who is actually suffering . There are great friends here who will help you and hubby discuss and give you wonderful support Marie & Patsy my guidance and support , how wonderful they are … Then John Micahel & Jason … Without them I would have been struggling… Nicolee it might be an idea for hubby to
follow the discussion from when I started it … The ladies have been a rock to me . I have found a support group based in in Cricklewood London …My wife & I if possible will attend, i have no idea what to expect and the wife very anxious about and scared … Its also our first one . I have no idea where you live if you need detail will post them here.
Dear Marie & Patsy
Thank you for the dosage advice … Can I get these at Holland Barrett or Boots etc. is easily and readily available , ladies see how naive I am , but with your help I am going make, what rest of my wife’s life so special and each moment we have together even more precious .
Oh bless you - lucky lady - yes you can get them anywhere - Boots maybe able to advise you too.
Patsy