Wondering if anyone has any advice for me. I'd like to be able to offer some help to my boys in dealing with my illness. My husband hasn't dealt well at all and I am afraid for what may happen with the kids.
I know it's harder to watch than to actually have it.
Hi Tiffinay: I also have teen and tween boys. My illness was just diagnosed this year and my symptoms are still mild so my kids have not had to deal with much yet. I have worried about this though and the doctors and genetic counsellor have reminded me that kids are very resilient and to be honest with them when they ask questions. I also am interested in how to discuss potential hereditary aspects of ataxia with kids. I am really interested to see this discussion thread!
Mine is hereditary. Im interested also. I have a teen age son all so. So far he act's like it doesn't bother him. I think as long as I can drive him to where he needs to go. It's ok. But I do have to ask him for a lot of help. And he does. I think it might bother us older people more. That's to bad that your husband cant deal with it.
Lori
My son all so had two very bad biking accidents. Makes me think.
Yes I think it is much more difficult when it is the wife/mother etc than the husband/father .. no doubt I will be corrected about that comment.
Personally, I find it best not to expect anything from them and just discuss with other sufferers whenever I can.
Patsy
Hi Tiffany,
I think the best way to deal with anything, positive or negative, is just to be honest about it. My two children are grown now, and I wasn't diagnosed with ataxia until they were older. My first husband died when our children were 12 and 14 years old. We talked to them about his illness and answered questions they had etc. He had an 18 month illness which was terminal. I believe the children coped better, as we were honest about it every step of the way. I was diagnosed several years after he died with ataxia. Although my children are grown now and were older when I was diagnosed, I have told them all I know about my ataxia and tried to answer questions /concerns the best I can. I believe they are more empathetic to people with disabilities because we have talked about it. Also, I had genetic testing and from what is known, my ataxia is non-hereditary. Therefore, I was able to tell my children that also. I think children are able to accept and cope better than adults. Your husband may have a harder time because he is an adult. Just my opinion...hugs to you! ;o)
As hard as it may be sometimes don't just assume that they CAN'T do something. Wait for them to ask for help. Otherwise they may resent you.
Michael are you speaking from experience? On the flip side of what you've said I know that I could have used something ( maybe the honesty so many spoke of) to be able to process my dad's ataxia.
Thank you everyone for sharing. It has helped ease some ofmy anxiety. I am honest with them and they have an entire exxtended family who have already been through it once (with my dad). The boys are in a very different situation than I was.
In response to CM4732, have you had genetic testing for your ataxia and/or does/has anyone in your family have/had ataxia?
As the wife and mother of ataxia sufferers I find it harder to know that I can’t take it away from them then anything els my kids are young and don’t yet understand what’s happening to thire daddy butt we reasure them as much as we can and hope it sticks my three year old stresses a bit but we try finding helpful things for her to do to help and she settles hope some of this helps. I think any parent leaving with an illness is a supper hero your kids will too.
Hi Tiffinay, I was in the same situation as you. My wife worries a lot about me falling and stumbling all over the place but she knows I know how to protect myself when I fall so that I won't hurt myself to much, which is a bit of a relief for her. As for my kids, I keep the ataxia as far away from them as I can. If they see me fall or stumble or if I'm falling asleep in front of them I make fun of each situation so that it is not so serious. They know I have ataxia but they don't know how hard it is some days because they are in school or if they are at home I'll go outside to my shed. I know they may have the gene if I passed it on,but if they don't think they have it, it won't bother them. The last thing I want is for them to be watching for signs if they have ataxia,worrying every time something happens to them. My wife and I will take care of that part for them. We will watch for signals. When they are old enough to really understand it properly then we will put them in touch with the proper people but for now I think it is my burden and with the help of my wife we'll see it through and our kids won't be to affected by all of what is happening to me. Remember, try not to leave it worry them to much, it may be around them but it don't have to a bad thing. Take care and good luck.
Yes I had the genetic test and there is no one else in my family with ataxia. I am likely the first (i.e. new mutation).
rose said:
In response to CM4732, have you had genetic testing for your ataxia and/or does/has anyone in your family have/had ataxia?