There is bereavement counselling for those who grief after losing someone.

[klazien]

But what about those who have lost the use of their own body abilities? Or the loss of a limb, sight, hearing, etc. Especially in the beginning one grieves over this. Wouldn't it be supportive to be able to voice this grief without always having to be upbeat? Or is this just rubbish?

[nana23]

hi Klazien i think you have raised a very valid point there. i actually feel like i have lost me if that makes any sense...

nana23 (moira) xx

[klazien in reply to nana23]

Hi Nana23,

I know what you mean. Absolutely all I ever did and lived for has gone. And the outlook is not positive. What is the use of slowly vegetating away?

[Wyndham]

I agree with this.

In some ways, being diagnosed with a progressive condition like Ataxia is particularly frightening as a bleak future stares down at you.

You may, today, still have your limbs, and still mostly have control over them, but you know or fully expect, that in time you will become confined to a wheelchair as you lose more control over your limbs. Some of us with Ataxia will need full-time carers, and yet there is no or previous little support in terms of coping with this realisation.

Thank you for raising the subject.

[Wyndham in reply to Wyndham]

Finger trouble - I meant 'precious little support'

[loopylainy]

Hiya! Thanks for bringing this up, thats exactly how I feel. It does feel like the real you has gone. I miss wearing my high heeled shoes xxx

[lindilu]

so do I. I also miss the ordinary things like going to the shop on my own or writing a greetings card. typing is also a pain.....who can we moan to without being told to "shut up and act normal." or "stop feeling sorry for yourself.ok there might be people worse off- but it would be nice to sound off occassionally

[wobblybee]

Feel free to 'sound off' anytime you like to me. I only wish I had someone

who understood when various periods had me on the edge. This condition

does feel like a bereavement, and there seem to be so many stages in it that

you have to come to terms with. It is the ordinary everyday things we usually

take for granted that are missed the most. For a long time I put on a brave

front and forced myself to have outings with an able-bodied friend, prior to

being diagnosed. She knew I had certain problems, and was very well-

meaning but I tried to appear 'normal' and the concentration it took was

exhausting. Re high heeled shoes - My daughter is getting married early next

year and since I can't wear heels, where can I buy 'elegant' flat shoes? Also,

the occasion itself worries me to a certain extent, hardly anyone outside the

immediate family knows about my Ataxia. It is my daughter's day, I don't

want any attention, I hope you all know what I mean.

[castle0365]

We have been trying to access counselling. Our 5 year old was diagnosed with FA in June of this year. We don't want to go to an ataxia group because we don't feel ready to see what will happen to our child. (we are not unaware of what will happen but we don't actually want to see it yet). This isolates us. We are further isolated because we don't want to talk to friends because most have children at the school where our child is. We don't want any possibility of our child hearing about FA before we know it is time for that information to be given. We are having to actively search for counselling. When we were given the FA diagnosis we were told - very nicely- to go home. We have had genetic counselling but as yet nothing to help us with the shock and bereavement that we feel and are unable to share just because we need to protect our child until old enough to handle this information.

[HarryB Administrator in reply to castle0365]

Hello castle0365

I understand the difficult and distressing situation you are in at the moment and why you don't feel ready to go to a support group. Have you been in contact with the helpline at Ataxia UK?

Harriet

[castle0365 in reply to HarryB]

I have only contacted the helpline for one question about flu jabs. We are on the waiting list for couples counselling locally which an inclusion officer directed us to. At Alder Hey where our son was diagnosed they only provide counselling if your child has died. It feels like we've slipped between the cracks. We have a child who is not acutely unwell and whose condition will only slowly deteriorate. I feel that it will be easier for us when we can talk to friends - but we don't want to do that until our son is old enough to be told about his FA. In the meantime we have time to get ourselves straight so we are in a position to help him with the emotional support that he will need. My husband is anxious to keep the information on a need to know basis so that there is no chance that our son will be told by accident. The paediatrician sending copies of a report to us and a whole host of people working in the education department has only reinforced his distrust of the authorities.

[klazien]

It is wholly understandable to want to inform your son on a need to know basis and try to keep the grim truth away from his as long as possible. But sometimes a child does not tell his parents when he struggles at school. Other children could tease him about his clumsiness and frequent falls. He could find relief in knowing that it is caused by a physical problem, not stupidity. Is it not possible at this stage to tell him only that his present problems are caused by something physical without telling him the rest till later?

Internaf has a group for parent of FAers, for when you feel ready to contact them.

[castle0365 in reply to klazien]

We are fortunate that our son has a full time teaching assistant and the children in the class have been told that he is 'wobbly'. At the moment he seems to accept that this is simply the situation. We will answer any questions he might ask and after any doctor's appointments I do ask him if he has any questions - but as yet he answers no. He has become a lot less frustrated and angry since he has had his TA and school seem to be managing the situation very well. We get a diary filled in by the TA every day so we know how he's done that day and, as you can imagine, even if he won't say anything, you can tell when you're child's unhappy even if you aren't certain what's upsetting them.