Mayo Clinic Connect
My husband has been diagnosed with cerebral atrophy. Is there anyone with similar diagnosis? In January of 1915 he was given 3 to 4 years to live.
Liked by fastfay
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.
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?
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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)
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
@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
@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
Liked by Teresa, Volunteer Mentor
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!
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.
HI Noreen. I have seen your message. Have I replied before. I have sort off got a bit confused. Keep in touch’
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!!!!
Liked by Teresa, Volunteer Mentor, Jamie Olson
Are you the person who has cerebellum brain atrophy and live in South Africa. If you are then I have corresponded with you.
Hi Noreen. I do get the user names mixed up. Glad to have them sorted now. I am struggling at the moment with dizziness, fatigue and balance. We are having a blisteringly hot summer at the moment with water restrictions and gardens oh so dry. My daughter lives in Regina, Saskatchewan and has such cold weather and snow i wish I was there.
I am excited to have traced another MSA sufferer in SA other than Sonja. Someone else to chat to.
Hope the hunting goes well and your trip to Alaska.Everyhing of the best for 2017
Liked by annmerc
Just want to make sure that you are the one that lives in South Africa! Where were you diagnosed with the cerebellum brain atrophy? What a surprise to hear that you have a daughter in Regina, Sask. When we drive to through to Alaska we stop to visit two of my cousins who live in Swift Current, Saskatchewan and Kindersley, Saskatchewan. My Dad was from Saskatchewan and went to school in Regina because the local school only went through Grade 8.
My husband, Howard, is walking with a walker now. He uses his cane once in awhile. He never feels dizziness but will fall down as though the brain just won’t let him stand up. Apparently the cerebellum brain atrophy is very rare. The doctor gives him about two years to live. Noreen
Was dx in October 2015 mild to mod atrophic changes in medial temporal lobe on right . Also mild cerebral atrophy….. I am nurse and was able to sit down and engage with my neurologist of my MRI Changes from MRI 3/14 2015 and one done on 10/2015. A pet scan ordered showed no early onset dementia or Alzheimer’s but no suggestions of why I have the atrophy. I also have an extensive family history autoimmune disease in immediate family which include MS, RA AS, psoriatic Arthritis and Lupus
I had received Dx of HLAB-27 and Lupus after labs by my family doctor. I had asked to be tested because 2 of my children were HLAB-27 +. And father and Paternal grandmother had Lupus. When I followed up with a Rheumatologist he said tests were inconclusive. The only other hx Is I had asthma as a child and in 2013 had had 5 hospitalizations for pneumonia ….I had a lung biopsy which differential dx was BOOP …… I was treated high dose steroids for 4 months …..I have some fibrosis……and take COZpd medication …… Maybe steroids caused changes in my brain? Maybe auto immune related ….. Back to neurologist in 3 weeks Reumatologist next week….. It affects my life in that I repeat things sometimes 3/4 times a day …. Hard to remember what i did yesterday or if I talked to someone ….. I have anxiety and I am unorganized and get overwhelmed easily ….. I used to be the best at multitasking . As a single mama of 4 for 16 yrs, I had practice.
Not sure if anything I just said helps….. I will report anything new I hear but as of now …… I too am still seeking answers.
Please keep updated and any new info I hear while I am researching, I will be sure to let you know.
I also will be praying for answers . God Bless you and give you favor and discernment.
I have corticobasal syndrome, I was diagnosed in October 2015 and your illness sounds the same
This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his diagnosis of Cerebellum Brian Atrophy with only 3 to 4 years to live. This took place in Feb. of 2015. I have left messages here but I get no response of anyone having this problem. He is now walking with a cane so it is progressing. He will move on to a walker and then be in a wheelchair. This affects his balance and speech. He doesn’t feel dizzy but he will loose his balance and fall. He is very hard to understand.
Is there any one out there who has this diagnosis or is it very rare?
His wife, Noreen
I have been diagnosed with corticobasal syndrome at Stanford university movement clinic in October 2015 I am 76 male and walk with a cane and walker
Hi Tony, and what is cortocbasal syndrone? My husband was diagnosed at Mayo Clinic in 2015 and given 3 to 4 years t live. Back then he could walk on his own but had MRI of brain and showed his cerebellum was dying. He is now using his walker and has progressed to that from a cane. His speech is also affected. It’s getting harder to understand. My husband is 78.. It is progressing just as the doctor said it would. It is good to hear from someone who has something similar. I have found only one other person with this. I guess that it is very rare. But at least he is the age he is and not younger with a job and kids in college! Please keep in touch.
Noreen, wife of HowardJames.
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