Cerebellum Atrophy

Dear Liz,
Are you the one who lives in South Africa? I have not kept up with you, because I accidentally deleted your message. I was curious where you were diagnosed at. I know that they would not give you a timeline. Howard is progressing as Mayo Doctor said he would. When he consulted with Mayo Clinic the doctor gave him 3 to 4 years to live. He was walking without help at that time. It will be two years on January 5th. Now he is walking with a walker and has difficulty talking. But he keeps going and trying. He is out with a good friend who took him hunting.(what a friend!!!) We plan on driving to Alaska this spring when there is no snow coming. Our daughter lives up there. It is good to know that someone else has this. The moderator of the Mayo Clinic (Colleen) says that it is very rare. May you keep going strong!!!!
Noreen (HowardJames wife) Thank you to all who have sent words of encouragement and prayers!!!!

HI Noreen. I have seen your message. Have I replied before. I have sort off got a bit confused. Keep in touch'

Liz /@pec2884

I am so sorry to hear you are having such a difficult time at present. My thoughts are with you. My biggest fear is the inability to communicate. Make the most of your break and Hopefully 2017 will be a little easier.

Thanks for sharing with us, @tntredhead I hope for improvement as well. Take care and be well. I'm glad that you were able to get some respite care, I'm sure you needed it!

@howardjames - Dear Noreen, I can relate to your husband's inability to communicate. This has been my husband for the past 3-4 years. Like your guy, he doesn't have much pain but with my Tom, his anger is increasing and his ability to deal with things is declining. I was forced to send my Tom for respite care today as I blacked out a night or two ago and ended up with a concussion and a injured tail bone. They tell me he is doing OK but I surely am worried and I can't move enough to go see him tonight. Hope things improve for all of us in 2017. Trish

@howardjames Dear Noreen: I just read the update on your husband's condition. How difficult it must be for him not to be able to communicate so that you can understand him. I see that you have a reason to be grateful in that he has no pain. How wonderful that you can find a positive in the middle of a trying time. Best wishes to you and your husband during 2017. Teresa

Dear Colleen, thank you for your reply! My husband is progressing as the doctor at Mayo said he would. He is now walking with a walker as the cane was not enough. And he has trouble with speaking, so it's affecting his voice, and I have a hard time understanding him. He saw his local doctor and he said he thought he had about two years left. ( the doctor also said he had outlived the national average for the USA by two years) I am just amazed that the doctor at Mayo Clinic knew the process so accurately.
I want to continue to converse with Liz Horne so I hope she will read this. Thanks for having this forum. I feel so sorry for the people who have peripheral neuropathy and are in pain. At least Howard has no pain!!
Noreen (wife of Howard)

Hi Noreen,
You were looking for Liz Horne (@pec2884). This is the discussion where the two of you were talking. Simply post a reply here and she will get your message.
How is your husband doing, Noreen?

Hi @howardjames . I have just written a reply to you but in the wrong page. Maybe it will come up somewhere. Nice to be in touch again. I do take some vitamins as well. It was recommended that I have Bit B12 injections every 3 months and take one Folic Acid a day. Off my own bat I am taking enzyme Q10 as well. The last two over the counter vits.
Liz

I haven't contacted dmkmom04, but did contact the lady in South Africa. She sounded as though her diagnosis was similar to my husbands. My husband is grateful that he is 78 and not younger with a job and kids in college.
Thank you for this method of taking to other people with same diagnosis. I give my husband many vitamins as I know after he is deceased they will discover that brain atrophy was caused by a lack of some wierd vitamin.
Noreen