Multisystem Atrophy

[livingwith]

My husband and I are in our fifth year of coping with his SCA- MSA. He was first diagnosed with Alzheimer’s but he didn’t progress as would be expected with Alzheimer’s and he was so young- only 43. He suffers from moderate dementia. I just responded to another posting and its good to remember that we have had some success when right now I am feeling pretty hopeless. I’m trying to keep him at home and safe but the only way to do that is to accept the help of my 70yr ...Read the full article

[MomhadMSA]

My mother passed away of MSA on January 23, 2002. She was 63 years old. At the time, it seemed as if the illness developed quite rapidly, but after researching it, we learned that there were many signs of her illness up to five or six years before we took action. I was getting married so several signs we just passed off as stress related (such as forgetfulness, mild dementia). These symptoms seemed to pass after my wedding. There were some other random episodes, but nothing concerning. It wasn't until approximately two years before she died that her symptoms became obvious. She eventually needed constant care including a feeding tube. We were fortunate to have a family friend who helped to take care of her on a daily basis. Hospice was also a savior, but she was taken off of hospice since there was no true decline in her condition after six months. Ironically, she passed away one week later.

It is difficult to be the only caregiver. You also need to have time for yourself. If he does not qualify for professional care, take advantage of help from your family and friends. My thoughts are with you.