support/information

Hi.  

I am looking for information for symptons or signs of the final
stages of this disease.  My ex husband has this horrible disease. I have 3 children that I will have to have tested.  I need to know how to explain this to them and also help them to understand what their father is going through.  He seems to be in denial.  He sleeps all the time and does not wish to see anyoune.  I don't know if he is getting the proper care.  He is on medication for depression and the involuntary movements.  He has really gone down hill in the last 2 months.  He is 46 years of age and was diagnosed about a year and a half ago.  Any information would be appreciated.  When should I have the children tested.  They are 9 10 and 15 year old.  
Thankyou

[CCF Neuro[P]-M.D.-RPS]

Dear Taz:

Sorry to hear about your husband.  Unfortunately, this is not a good disease to have, and the eventual outcome is mortality.  Much more information can be found on their website and I would check it out.  Wether to get your children tested is difficult to say.  I would evaluate whether they could handle the news.  You already know that there is a 50% chance of getting the disease.  They need to live life, whether they have the disease or not.  Sometimes we think that some children may not be able to handle the future if the disease is known.  Only you and they can make that decision.  

Sincerely,

CCF Neuro MD

[BJP]

I am so sorry tho hear about your husbands condition. I know this is a very difficult time for you. Also going through genitic testing for the kids is an added woryy..I have been in your shoes with disease , not this one inparticular but my heart goes out to you and your children and husband..I will do some reasearch at work to see what support groups could help you if you let me know where your located. I am in the medical field and would be glad to do what I can to help you with some support..My e-mail id ***@****  Feel free to contact me if you would like.
Best Wishes to you and again I am truely sorry about your husbands illness..Betty Powell