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Ataxia UK
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Husband with cerebella ataxia

I’m 36 yrs old and my husband being 35 was diagnosed with cerebella ataxia 3 yrs ago. The last year he has deteriorated hugely. He has a walking stick when we r out and about. He has started stumbling a lot in doors. I’m just really finding it hard being as we are a young couple. It’s stressing me out and getting me down. We have 2 children who are aged 13 and 7. It sounds selfish me saying how it’s making me feel, I know.

I just feel so tired all of the time as I feel I’m doing everything. I love him very much and I feel for him so much as he used to be such an active man.

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I really feel for you, i am 39 and husband was diagnosed nearly 4 years ago. So far his progression is slow but he stumbles often and suffers awful headaches. We have a 7 year old who knows nothing about his dads illness although has started to notice dad is 'wobbly'. My husband is very active and stubborn...i also have him on a cocktail of vitamins and trehalose in his coffee which i cant prove helps but its my belief that they do. We dont really discuss his Ataxia but it is pretty much all i think about....i would give anything to have a day where i could just think normal thoughts! You are not selfish....this is hard for everyone to live with! X x x

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Don't give up. I am 70 and have previously been active ( skiing marathons etc ) the best advice I can give is to join him in activity and to concentrate on what he CAN do , and not what he can't !

Good luck.

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Hi Kirsty34. I know it is very difficult for you. Speaking as a man with CA whose wife left me after learning of my CA. I suggest that you both talk about it and all the difficulties that arise because of it openly and honestly. Perhaps include Dr's and therapists in your discussions. The problem won't go away and will probably worsen over time. Life isn't easy all the time and we make of it what we do. Because you have children together he will always be a part of your and their life. I wish you and your family positive thoughts!

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Thank you for your reply. Sorry for your outcome too! 😢😢

I love my husband with all my heart and there is no way I would leave him just because of he’s condition.

You marry to the words of ‘through sickness and health. I will always stick to that!

The frustration I have is that I try and advise him all the important things he will benefit from, for ex, drinking more fluids, eating my fruit/veg. Exercise.

I make all healthy foods for him and then will find the veg is left.

The arguments I have with him regarding this. I keep saying, your not going to help yourself if you continue like this!

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Your words brighten my day! Thanks! I'm reminded of the old saying, " you can lead a horse to water but you have to be mighty strong and determined to drown him" :)

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Please don't worry about feeling bad. I am older than you and my husband has had CA for 10 years. Fortunately our children are older and have been through Uni but are now all back at home and thankfully working.

I gave up work for six months to devote my full attention to my husband and to put in place a care package. Like you I felt that the burden of doing everything and sacrificing a couples existence tough but we have got through it. I try to stay positive and am thankful for the good times. It must be very hard on you as your children need you too but don't take it all on yourself and try and put some time aside for yourself too.

My council care team offer respite and I try to involve our fortunately large family to give me a few hours without having to worry.

If he is falling a lot you might consider a watch lifeline or similar company to put your mind at rest when you are out doing the daily chores.

Good luck.

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Kirsty, You are too young for this! But stand by him and get help 4 yourself , Good luck Remember, time is on your side (4 a treatment). N

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Hi Kirsty @kirsty 34

And to all the lovely, helpful people here who talk, and are always here with wise wisdom - it’s like a big hug !!

- not a ‘know it all’ chance to extol the virtues of pharma toxic, useless drugs; (like some sites, say for example MS, which is what caused my cerebellum ataxia. I’m 44 and had it 5 years.)

So,u have found a good place here with all these wonderful, Wise peeps.

. I just chip in every now and again...and sorry I have been quiet, there’s been tough times!)

Anyway...!

There seems to be many types of CA, and as we are all little snowflakes: it effects us all in unique and different ways, although following a general pattern, it is unique so can’t be predicted. But outcomes can be improved a lot.

Live every day as if it was your last should be advice everyone should follow, but how many of us do or did?

The beauty is that people with degenerative conditions, they actually do. (Every dawn beautiful and every petal precious. Ie u start noticing things)

It’s liberating and motivating

So if you have always wanted to get married by Elvis in the little chapel of love; well nows the time to do it.

The single most useful thing I have ingested is LDN. Subtle, but everything improved a little and the pain magically subsided enough for me to start living again.

And that in turn gave me an appetite, and ldn works best when supported by a diet rich in a variety of fruit and veg/antioxidants.

So I started to eat better,which gave me more useful fuel .... and I feel your husband would benefit, feel empowered; and just that little bit more hopeful and less stressed and most importantly - more energy and clarity to deal with the challenges as they present. And as he adapts., you will too?

Here’s something I found...

“According to the Low Dose Naltrexone home page [LDN], LDN has been seen to benefit many different neurodegenerative diseases associated with autoimmune processes, including Multiple Sclerosis and Parkinson's Disease. Dr. Bernard Bihari [Bihari2003], [Bihari2013], who has successfully treated over 300 autoimmune cases, reports that "all have experienced a halt in progression of their illness. In many patients there was a marked remission in signs and symptoms of the disease."

Please see [LDN_Story] for an excellent documentary video, and [Elsegood2016] and [Moore2008] for books.

Dr. Weyrich notes that these reports are considered anecdotal, and without expensive double-blind placebo-controlled trials (which are unlikely to be funded, since LDN is a generic drug that cannot be patented), these results cannot be provento be anything more than "spontaneous remissions"; however, given the low cost (less than $40/month) and extremely low side-effect profile, a therapeutic trial may be in order.

It is believed [LDN] that LDN works by temporarily blocking the body's opioid receptors, which induces a reflex increase in the body's natural endorphin and enkephalin levels, which then modulates the immune system to restore balance and reduce inflammation. However, [Younger2014] has proposed an alternative mechanism in which naltrexone exerts an antagonist effect on Toll-like receptor 4 (TLR4) that are found on macrophages and microglia; additional mechanisms involving astrocytes, NADPH oxidase 2, and the opioid growth factor receptor (OGFr) have also been proposed. The result is reduced neuroinflammation, which is generally associated with all neurodegenerative diseases.

The main caveats are that patients cannot also be being treated with extended release opiates for pain control and cannot be organ transplant recipients. This is an off-label use, and as such is not likely to be covered by insurance...”

The ldn research trust will help anyone wanting to try it or having specific enquireries.

Good luck, it’s always darkest before dawn 🌈 x

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Diet does not help so give yourself a break. It is always best to eat well but it does not help ataxia,

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I believe diet helps with every person with anyone disease

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That is the most wrongest worstest leastestest helpful comment I have yet seen on this forum. Please click on my name or avatar and find links to dietary research. Food most definitely alters your neurochemistry and can be put to good use.

-

Now on the other hand just adding a vegetable to a meal of grill cheese and diet coke is not what I'm talking about.

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Lots of helpful replies for you ... A few years ago I discovered that having had my Terminal Ileum removed when I was 27 - now 72 - that I would not have been absorbing B12 - ready for the return journey to the liver. I suffered neurological damage and went for Spinal De-compression surgery some 11 years ago. I now live with the consequences. I have learned so much about B12 deficiency and now inject weekly - sometimes twice. The link below about B12 details the neurological symptoms of LOW B12 - and Ataxia heads the list ...

b12deficiency.info/signs-an...

Sometimes the simple things are missed :-)

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Hi Kirsty my name is Paul I’ve the same condition as your partner I’ve had it since 20012 i go to the gym 5 our 6 times a week and it really helps my condition so tell him to try the gym it will really help and don’t make yourself feel bad 😃

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Umm, we don't know what "condition" her husband has. Saying one has cerebellar ataxia is like saying one has cancer. What type of cancer one has can make an enormous difference, and knowing what type of ataxia one has can be equally helpful.

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I’m so sorry to hear about you and your husbands circumstances . I guess like me your both lucky that you have each other and are happy together . It must be hard for you with the children aswell. I do understand as I’m 50 and my husband is 63 . We will move to a bungalow next year and we are in the process of having aids put into our house . He is not able to work now and I’m working full time and too feel like I am doing everything some days . It’s not how I thought my life would be . I’m so glad I have him though and always be here for him . I hope you find some comfort from this group as I have . It’s great to know we have each other . Keep your chin up darlin and keep smiling . Xx

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We moved to a bungalow two years ago (I am 57) and I love it.

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Hi Kirsty 34

I was diagnosed at 36. I started using a walking stick 7 or 8 years ago and found it hugely beneficial.

I don't have any great words of wisdom for you, but I would echo wildstyler, concentrate on what he CAN do , and not what he can't !

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Wise words thank you , I’m sure I will love a bungalow . Whatever my husband needs is fine by me 😜

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Unfortunately it is part of the terrible disease, for family to have to watch is horrid - it may not be perfect but at least you are still here.

Most of my family either as a group or individuals have talked to specialist neurological therapists - they really understand.

Break helps too x

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Hi Kirsty.It must be very hard for you.My partner is 46 and won't tell anyone his diagnosis although everyone has noticed but his workplace who must have blinkers on.Life for you with the children must be exhausting. I am with you on this journey.It was quite scary for me initially and wondered if i could cope.I had mixed emotions and wondered what life would be like but we manage.From the side of it being your husband I have found ways to manage.I look for signs of him getting tired and ask him to sit down otherwise he may get up and fall into the door or wall.Ive asked the consultant for an open letter for us to be seated at concerts or airlines before the crowds of people etc.He gets anxious but I can now calm him quickly.I believe as much exercise as he can manage definately does help.If I can answer any questions or you need a chat please feel free to message me anytime.

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Kirsty,

Do you know what the cause is of your husbands ataxia?

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