Anyone northern Irish with children

[Clairemariegibson]

I suffer from spinocerebellar ataxia type 2 and I feel a bit lonely! My husband is amazing and has encouraged me to post etc on here but I would love to meet and/or chat with a fellow sufferer. I also have 2 young children and all the worries that goes along with having ataxia and children!

I would love to meet anyone who can relate to having ataxia and has to deal with probably leaving young children behind some day!

[PGee]

Dear Claire Marie,

What a lovely name! I am sorry I am neither a mum or Irish, but we can pretend I am! I am half way there with having Ataxia myself - oh, but to think of leaving your children behind some day must be a heavy burden to bear and give you much grief.

Sweetie, I can't know what it is to be a mum in these circumstances, but I have suffered from depression for years and there seemingly are better days, but you never know when you will have them. However, you have to be careful in what you think, because it does have an effect on your mental state.

If I were you, I would try better to cherish those darling little babies while you can with a positive attitude; love your dear amazing supportive and encouraging husband (a real gem!) - and here is a secret, we will all leave our dear ones behind, but most people do not know when that will be (and usually do not think about this), but with Ataxia or other diseases, we are given notice and this prays on our minds!

I hope that you DO get to befriend an Irish mum near you that will help you and your precious family. Give your hubby a hug from me. God bless him.

[maggsataxia]

Hi Claire Marie I am not great with computers facebook smartphones or any technology but Ive started using this site as I find it more helpful talking to people who can relate to having ataxia than going to the doctor who has told me hasnt a clue other than its very rare. My name is Maggs Im from co.Fernanagh im 47 and have 2 little darlings well their not so little now Alanya is 12 and Connie is 11 and their as different as chalk and cheese.Over 20 years ago I had surgery for a brain tumour and afterwards was told I had an acquired cerebellar ataxia which I think means it was a result 0f the brain tumour. I would love to stay in contact and learn a bit more about your ataxia.I dont really have much contact with anybody as I havent come across anyone locally. I know their is a suuport group in Belfast but its to far away and I dont drive which is a big handicap as I have to rely on others.I dont use any aids for walking yet as I ..like to be indepentant but that day will come but until then I.ll hope for the best.I can remember when my girls were little and how scary the future was and not knowing what the outlook was, but to be truthful they have been the best medicine ever they motivate me to do my best.When they were small and in the buggy it was great as the buggy helped my balance.

[PGee in reply to maggsataxia]

Good Morning Claire

I am just checking that you are alright? I see that you have a reply to your request post. Magg sounds lovely and writes nicely.

Dog sitting Fudge, this week, whilst my friends go on holiday. He, the dog, looked all bleary eyed when I first woke him up to go to the garden. He soon woke up - and typical of him - went in the house to get a ball for me to play fetch with. Transformed to a bright eyed, wet nosed, tail wagging horror! He makes me laugh. (He has 40 winks whilst I am on the computer, lying by my feet, ready for when play resumes)

I have seen a new neurologist (he's a dish) but he wants me to be tested for genes that might show light, on my developing condition. Scary stuff thinking of how and if, I need to tell my sister she may have it, or worse, her children. I have his report to my doctor and have googled some of the words that he has used, which seem to acquire a dangerous and overwhelming language of their own, when translated into medical speak. And the medical speak is daunting. I don't have kiddies, but my sister does (obviously because I said that!). I feel quite inadequate, scared, fearful a feeling of coldness in just thinking of the next steps for me and for telling the family. Have I been blinded and fooled by my mind wanting to "think" it away? Do I want the 'light' that the neurologist wants?

Now what I really wanted to know was, did you give your amazing, supportive husband the hug I sent him the other day? (JUST the one???) Hug your two precious babies. I hug you Claire. Thinking of you. Love and hugs.