Family

[eileen200271]

Hi all. I have family members diagnosed with SCA6 my father-in-law was diagnosed in the late 1970's and passed away in 1987 at age 68. My husband was diagnosed 4 yrs ago at age 63; speech, swallowing and balance all effected. Memory varies from day to day. Our son, aged 41 was tested and had a positive result for SCA6 also, currently with no symptoms. I have mobility difficulties after 8 hip replacements - don't ask!!!LOL. Our GP and the Neuro consultant have been really good at providing the services required, SALT, physio, walking aids, etc. I am finding it really difficult in that my son does not want his dad to know about the diagnosis but I feel I am greaving for my man and my son. I also have 2 daughters who do not want testing because they have children of their own. Thank you for reading this and I wish you all peace in your lives. God Bless. X

[tedjohnson]

Dear Eileen. Poor you. What a lovely person you are and life has given you a bad deal. I really can't advise you other than to suggest you talk to Doctors and anyone who knows what your problem is

Continue to be as cheerful as possible and use all the Ataxia web sites . Sheila in the helpline at Ataxia is most helpful----------give her ring

Very best wishes. Ted

[eileen200271 in reply to tedjohnson]

Cheers, Ted. Today has been a better day, take care. E x

[BpurceA in reply to eileen200271]

Just remember that you are not alone!

You have my deep respect and love.

Regards

Barney

[LBenyon]

I am new t this site Eileen,i have had CA for many years and was told it would be progressive, it has been I have days when my speech is very slurred,i now cannot walk without help or my 3 wheeled walker as my balance is terrible, my memory is really bad at times but ok on occasions? I have Rhumatiod Arhtrist as well and have been told by docs and Rhumatiod Arthrist nurses that stress within family life can set off my Arthist which is hard for me as I have a very small family with loads of problems!! Lorraine

[eileen200271 in reply to LBenyon]

Hi Lorraine, I only found this site the other night as well. Feeling down then started to read the blogs. Good to know that am not on my own, being a upbeat for the family is hard work. Eileen

[LBenyon in reply to eileen200271]

at last my older sister is coming with me when I see the nueroglist but he is not giving out much information so shes thinking oh well it aint that bad ?As anything I tell her she thinks im exgracting she not got a computer to look things up?

[eileen200271 in reply to LBenyon]

Try and print some info off for yr sister. Understand completely what you mean tho. My husband's friends only see him sat down and think he looks well. But he needs help showering, dressing, has special cutlery but they don't see that he can't manage steps anymore. Just adds to the stress at times, doesn't it?. Best wishes x

[eileen200271 in reply to eileen200271]

Or Ataxia UK could send some information out????

[LBenyon in reply to eileen200271]

that's a very good idea,thanks I will print off some info!!!!! weather she will read I don't know!!!! Lorraine

[february]

Dear Eileen, You have so much to deal with, and I'm truly sorry! This site is so great for support, as well as information! We are always here for you! Hugs..., ;o)

[eileen200271 in reply to february]

Thanks February, was feeling really lo last week. My friends are great at listening and I appreciate them. I just needed reassurance from those who also have the condition - I'm not but seem to have been surrounded by it all my married life. There was no information about the condition in the 1970's and 80's it was just all classed as ataxia.

But it's now 6.30 in the morning and on a lovely, sunny Saturday I am enjoying my breakfast with the patio door open and a little bit of quiet time to myself. Peace to you and all who use this site. X x😍😍😍😍😍😍