Ataxia UK

My biggest fear

My biggest fear - will my children/grandchildren get this disease?

I have an as yet unspecified type of inherited spinocerebellar ataxia ( my consultant sent a sample of my blood off for DNA/genome testing a couple of months ago) I didn't know about this until he explained, still don't really understand. But a big worry is about passing it on,this must be an ultimate dread for lots of us.

Does anyone have any thoughts?

Thanks Dave

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I think a lot depends on what type, if any, they can identify. Maybe a 50/50 chance of passing it on. Sometimes they cannot find any results and it can be classed as unknown. I dont have any explanation for myself. Try and stay positive. I am sure other people can tell you their experience.

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Thank you,and good luck 😃

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Hi Dave🙂 This thought probably lurks at the back of most people's minds😏 My children are adults, and neither want to be tested, even if I do find out a type. They say this now but, whether their attitude would change if either of them wanted a family... Our family has a history of cancer, me included, would I have wanted to be tested for that when I was younger🤔 It would prey on my mind for years to come. Obviously if it was an aggressive life threatening type of genetic cancer there would be no question, I'd definitely want to know and take any possible evasive action.

Predictive testing is always an option when a mutant gene has been identified. But I've read posts saying this can pose a dilemma for people who are pro-life.

I donated DNA for the Genome Project, and an 80%+ link came up with a Recessive type of ataxia.. So the testing continues. I will pursue testing for as long as I'm given the option🙂

🙂xBeryl

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Thanks,my children are in their mid 20s,four grandchildren, youngest 9 months, eldest 5;its a big worry. At least your username made me smile 😁 All the best.

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Hey DiscoDave - I am a daughter of a recently diagnosed father with MJD. Genetics test was pushed by me. I have also decided not to test myself. It was a mental exercise in the beginning not to think dark an depressing thoughts, and I saw my father worried about the same thing as you. My words to him was, after it had dawned upon me:

*It is nothing to worry about dad, worrying kills more people than this disease does. If I get wobbly I know what is wrong, and there are constant breakthroughs on the research front. Enjoy life, enjoy my beautiful children and don’t worry. You are the sick one of us, don’t feel down because of me or my children, enjoy our visits instead. As we do.

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Thank you so much,wise words.Somebody did tell me once that women are less likely to inherit than men.Good luck to you and your Dad.

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That was my fear too, but my my two children were tested & don’t carry the gene ( I have Freidreiches Ataxia) I have a sister with it but my other two sisters & two brothers are carriers but their partners are free free of it so their children won’t get it but could be carriers I think that’s how it works?

Keep positive

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Thanks Murcia,

That's good to know,and good luck with your condition. Your username made me smile,I've had lots of happy times on the Costa del Sol! Cheers

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I'm in the same boat as you discodave. I have 3 teenagers and worry about them. But what kind of parent wouldn't? I think most of would rather suffer something than see their kids go through it. I found out last year I had ataxia and Yes it's hard but looking back my life had always been worth living. Everyone in life gets challenges, No excepetions. This is ours and we need to make the best of it. Strangely enough it has helped me grow and appreciate things more than before.

I like to think that my children are a better version of me and think that if onfortunately they would grow ill that they would be able to cope with this even better.

Its important to stay positive and hope that there will come a solution.

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Thank you so much,its good to hear from someone going through the same stuff.You are right about being positive 😀 Good luck to you and your children.

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It is everyone’s biggest worry and fear but there is nothing you can do has already been decided.

Everyone in a family deals with it so differently too.

I will tell you my experience. I have SCA1 that I inherited off my Dad. Back in 1995 they had just found out about ataxia testing and I was one of the first people to be tested (hence number 1). I have 2 sisters and after I found out I had ataxia coming, my 1 sister was very cross with me for being tested (she has ataxia now) and the other tested and was clear. I found this very hard at the time - in my mind I was jealous because her children were safe and mine not! Horrid I now realise but it helped me a lot when her husband suddenly died and a good friend also suddenly died. I realised I would rather be here with ataxia than not.

Ataxia is cruel but at least it is not mental, just physical.

What you tell children is very individual too. My GP advised me to tell my two as youngsters because finding out for me was a horrible shock. I was my Dad’s carer and he lived next door so they saw him daily

Testing is good and cruel. My sister had a breakdown waiting for her result. My son who was tested couple of years ago is having therapy because his sister was so horrid.

Good luck x

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Thanks for telling me a bit of your experience, food for thought regarding testing.Good luck for the future.

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Some ataxias do not miss a generation as they are hereditary. Testing is one way of finding out. Observation is another.

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Cheers and good luck

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Dear Dave,

I have MJD an hereditary degenerating disease. In my case I think my paternal grandmother had it but she died too young before the symptoms set in. In my dad's generation there were five kids, only my dad and his sister had it. My aunt had four children and none of them have it, My father had three children, my older sister does not have it, I have inherited it and my younger sister died of an heart attack at the age of 45 so before the time of the symptoms. I am told that there are no carriers so in the case of my aunt's descendants it ended with her so there is no danger of it coming up in her descendentes, also in the case of my elder sister and her descendants are also free. In my case my children could have the disease, my son has no children yet and the neurologist says when he decides to have a family he can get genetic counselling - testing and sperm cleaning, we can stop the disease spreading so if he is positive it will end there. I am not sure about my deceased sisters' children, but I will not cause them unnecessary worry. The majority of people do not know what awaits them, so let us live one day at the time without worrying too much about what the future has in store for us.Best wishes

Isabel

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Thanks,MJD is quite rare so must be hard to deal with.I will try and stay positive, good luck to you

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Hi discodave. It seems the general consensus is not to worry too much about testing the rest of the family. I do disagree with the impression that males are more likely to get it than females, because in my family (it came through my father's side of the family - from his mother) it is fairly evenly distributed, maybe even slightly more females than males. I have never tried to hide any information about this spinocerebellar ataxia from my children, telling them that although it may be debilitating it is not life threatening. My father led a full life and worked in a legal department until his retirement in his late 60s (very productive). I have had, and am still having, a good life - now aged 69. My son had children even though I had told him there was a 50/50 chance of inheriting this ataxia. My daughter has 4 children and my son has 2. All we can do is live and enjoy each day that comes along, love our children and grandchildren and accept whatever life throws our way (no matter how reluctant we may be). After all worrying never helped anyone, especially when the situation is beyond their control. So stay happy and keep smiling. All the best. Barbara.

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Thanks for kind thoughts.I pretty much knew women are just as likely as men to have ataxia (the evidence of my own eyes when I see the people waiting to see my neurologist) it was just I was with a group of people at a restaurant in Southern Spain when one lady in the group told us about this friend who had this condition called ataxia, genetic but only passed on to males!)

I didn't know this lady or most of the group so I didn't speak up.

Anyway good luck to you and your family 😀

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Hi Dave

The bad news is that it took 20 years before they could identify my type of Ataxia, but I guess it doesn't usually take that long. I have a gene that is completely missing, and I assume that's why it took so long. Until they have identified the errant gene they can't do any testing.

I have a son in his late teens, and he shows no great desire to be tested. Because it is inherited the symptoms could vary from almost non-existent to relatively severe, and no testing can predict this hugely important aspect.

It is indeed an absolute 50/50 chance of the faulty gene being passed on, regardless of the sex of the offspring.

All the best

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Thank you so much,that's helpful. All the best,

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Click on my face. Read the research I have linked. People who are genetically positive for many SCAs can, and some are, holding their symptoms at bay indefinitely, but you need to make a conscious choice, Doctors at Harvard are advising their patients to try the routine I am using. Watch this video:

youtube.com/watch?time_cont...

You might be able to "fix the holes in your roof" or at the very least you might make them a lot less leaky!

Not getting tested means you give up any fighting chance. Modern medicine and people on this forum are focused on a single pill or operation that will make them better. It's tragic that science and medicine is not set up to study a multi-modality treatment.

FACT: Some people with Alzheimer's, Parkinson's, Huntington's, and SCA are living well past the age when they should have symptoms and remaining symptom free, but science and medicine are not willing to accept the possible answers as a solution. A regimen that includes daily intense exercise, a healthy diet, supplements, medicines, and attention from medical professionals IS "curing" many people today.

ncbi.nlm.nih.gov/pmc/articl...

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Thanks, I looked at that/read that,VERY interesting. Cheers

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Dear Dave, After 23 years (the last 15 years since official diagnosis) of living with an unknown type of ataxia, I finally have an answer...,yay! Over the years, I've had genetic testing for the known dominant and recessive ataxia's, as well as genetic exome testing and most recently a skin biopsy and blood test (one thing led to another and so forth). A few days ago, my neurologist called me with a long awaited answer! Anyway, I have two grown children, both would be aysmptomatic carriers. One of my children has three young children and the other is expecting her first baby in March. I'm naturally concerned about my grandchildren, but in my case, my two children's spouses would have to be asymptomatic carriers of the same gene as my children, to cause my one or more of their children (my grandchildren) to have my type of ataxia. The reason for my ataxia is an EXTREMELY rare cause. Of course, I pray this never happens. The best I can do is make them aware of the hereditary factor, as it's out of my hands at this point, although this remains, and will always be, an enormous concern to me!!! I also have siblings and will talk with them, if any want to know, as some people do not want to know what might be in their future (I inherited this recessively from both my parents, who were asymptomatic carriers). Therefore, this would also have implications for my sibs. I will NEVER say anything to my parents (87 and 89 years), as they would be upset and I wouldn't want them to be! This is how I'm handling my situation...,My best to you..., ;o)

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Wow that's a long wait ! Thanks for telling me some of your experience.

Good luck 😃

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Because I’ve been diagnosed with Cerebellar Ataxia and Parkinson’s disease, I am having genetic testing done, because of the same type of fear that you are concerned with.

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From what I've seen on here,the results of genetic testing can take a long time,and sometimes are inconclusive. Good luck.

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I thought I replied to this but I can't seem to find it. My vision is not so great so maybe thats why... Anyway testing is a n old controversial issue. I recall a huge debate over testing unmarried people for a host of genetic diseases. Now certain people will only date those who have been tested. Others say this is discrimination. Now that genetics is acknowledged to play an important role, I guess common sense would prevail. Do what you think is right. xx N I would tell and write 4 future generations and leave the choice to them.

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Thanks for the reply Beta,

genetics is a minefield, that's for sure.Good luck to you 😀

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