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
I was recently diagnosed with cerebellum atrophy with no known cause. I am 49 yrs old. I refuse to use a cane at this point but I fall frequently, without warning. I don’t know what my prognosis is and I am not sure I want to know. I don’t see activity since January, so I am hoping I get a response.
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@ldrake101, This makes sense! I guess I misunderstood your mention about the cane.
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
My son is 5 and diagnosed with cerebellar atrophy, what do i need to know about this ? He is 5 and his cerebellum is normal for a person the age of 65 years old.
I can only imagine your worries with such a diagnosis, but I’m so glad you’ve joined the Connect community.
@howardjames, @pec2884 @dmkmom04, @menville, @lindal, @tonyc @tonyc55, @godisnumber1, would you share your experience and insights with @ldrake101?
While we wait for members to join in, you might also wish to to view this Mayo Clinic news article about autoimmune cerebellar ataxia: http://mayocl.in/2mX9Off
@ldrake101, what questions do you have?
I haven’t seen any responses but I saw a mother trying, like me, to make sense of this diagnoses. I know there is no cure or treatment and little that can be done to slow down the progression. I am going to a physical therapist to help with balance and to monitor my deterioration through assessments so I get the correct devices for mobility. I have the form that is like Parkinson, with tremors.
Liked by Colleen Young, Connect Director
It has been awhile since I posted to this site. My husband was diagnosed with cerebellum brain atrophy in January. of 2015 at Mayo Clinic in Rochester, Minnesota. The movement specialist there gave him 3 to 4 years to live. He is now walking with a cane but will soon progress to a walker and then wheelchair and would probably die of pneumonia. I have not heard from anyone with this diagnosis. He is clear of mind but his speech is getting very hard to understand. This is very hard for him as he was very physically fit and healthy. Is there any one who has the same diagnosis or is this very rare? Should he go somewhere else for diagnosis or is there anything to slow this down? Thank you for any responses.
I haven’t heard from you in awhile. How are you doing? We are now at our home in Homer, Alaska. We did travel trough Canada and stopped in Swift Current, Saskatchewan. Isn’t that where your daughter lives? Howard is now walking with a walker with wheels. He does fall quite a bit, but, has not broken any bones. Where were you diagnosed at? We won’t be returning to Michigan as we have sold our home there. This way we are closer to our daughter who can help out somewhat ( she has young children and home schools them. Just want to keep in touch with you as you are the only one I have found who has this dianosis.
Noreen (wife of Howard James)
Liked by Colleen Young, Connect Director, Jamie Olson
I am in severe pain since falling about a month ago, then falling two weeks ago. I stumble, catching myself by grabbing onto walls, furniture, and people. Some days are better than others. Seems like I am deteriorating faster than previously. I am frustrated with this situation and feel like crying all the time. My life revolves around trying to stop the pain.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
@ldrake101, I bet you are frustrated. Thank you for posting again. I’m so sorry you are feeling frustrated and send well wishes your way.
@howardjames and @hopeful33250, I wonder if you could please share any insight you would have available with @ldrake?
Liked by John, Volunteer Mentor
@ldrake101 I am so sorry to hear about your diagnosis as well as your pain and falls. I am sure that this is very frustrating and troubling for you, especially at age 49. I would encourage you, however, to use some sort of assistive walking device, though. Perhaps a walker would work better than a cane (it wouldn’t get in the way, and it might steady you when you walk) it would also help prevent falls and the pain associated with the falls. I am glad to see that you are involved in physical therapy for the balance problems, that is really important. If you are comfortable sharing, please share with us how long you have had these symptoms and how they started (suddenly or gradually over a period of months or years). Are there any meds that have been suggested by your doctor. I ask these questions because I have a Parkinson’s disorder (PD). I have had symptoms of balance problems, foot dragging and terrible fatigue. I have been taking PD meds as well as lots of exercise programs. I know how difficult these symptoms can be. I wish you peace, comfort and wisdom as you seek help. Keep sharing with us. Teresa
HI Noreen. I am sorry I have taken a while to respond. At the moment I am nursing my husband who has had a full knee replacement. On the run (sort of) so have neglected my correspondence. Well done on all the driving you did to reach Alaska. My daughter now lives in Regina (before in Indian Head) now but I remember Swift Current on the journey to Banff one year. I will Google your Alaskan town’s name as I only know about the Inside Passage etc.
I am quite excited to have heard about another MSA sufferer that lives in Johannesburg. This through the closed Multiple System Buddies Facebook. Now I know of two here in SA. If you are on FB look them up. It is totally private.
You say that HJ now has a walking aid with wheels. I am not quite there yet but now take two trekking sticks on my walks with the dogs and one for the the shopping. At home I am still fine in the house. I just have to pace myself and lie down for short times during the day when I feel light-headed.
My speech is still fine but have got the name of a good therapist if needed in future.
Tell me more about your new home.
@pec2884 It is good to hear from you. Thanks for sharing the FB information with our community! Teresa
Hi Noreen. Daughter has been there for 25 yrs. We have often visited and once I remember driving through Swift Current. Having a time line like your husband has is upsetting. Is he aware of it or only you. Liz
I haven’t heard from you in a long time!!! Just a note to tell you that we are now living in Homer, Alaska. We are in our rainy season and it’s cloudy and overcast almost every day. It is depressing but we have bought a special light that Alaskans sit under to give sunlight and stop any depression which can happen. We will only get 4 hours of sunshine during the month of December. This will be our first winter here. We have sold our home in Michigan and will be living here full time. At least our daughter and family are only two hours away from us. She has 3 children and we enjoy going to their music recitals. I envy you living in S. Africa which is warm.
How are you doing? Have you progressed in the cerebral atrophy? My husband is still walking with a walker but sometimes he will get dizzy and just fall backwards. I do have trouble understanding him but he is patient and will repeat what he says. He still can bathe himself and we have a walk-in shower that we have a stool in. I also use the stool as I have a bad back that gives me pain. It’s the pits getting old!!! It is not for sissies.
I would love to write to you and send you a postcard from Alaska. I don’t know if you can post your address! But you could leave it at my email address.
Thinking of you,
Noreen ( wife of HowardJames)
Liked by Teresa, Volunteer Mentor, Lisa Lucier
HI Noreen,I have been a bit quiet of late. I think I have joined too many sites and am not keeping up with all of them. I do admire your move. Very brave but the compensation of having family near must give you joy. I don’t think I could survive with all the rain and only 4 hours of sunshine in December. My duvet is very snug in our winter and I love a cuddle but your extremes would be too much.
It is a mystery how this cerebral atrophy has such different symptoms in different people. I am dizzy and clumsy and topple sometimes but my speech is not affected yet. We have just started altering our bathroom to create a wet walk-in shower and room will be wheelchair friendly. Thinking ahead.
We have had another blow. My husband has to have a radical bladder removal due to cancer and adjust to a permanent bag. Such a psychological adjustment for him.
I would love to see a postcard.
Best wishes to Howard.
I’ve removed your home address from the public forum. It is safer not to share personal contact information on a public site. You can send Noreen your postal address by using the secure private messaging. To send a private message:
1. Click on the @username of the person you want to message.
2. Click Send Private Message.
@howardjames I just ran into your input. So sorry for that. three of my sisters and I have brain disorders akin to Howard’s, and I have a friend(Alan) a few miles away who has Cerebellar Brain Atrophy with very little time to go. My own family apparently has a form of Amyloidosis which deposits dead protein fibrils in the nerves, including the Cerebellum, causing atrophy and shrinking with pressure. One sister has died, another is very close to it, and a third is a few months off. Less than one person in a million will present this disease each year. Aren’t we all lucky! Because I apparently have ACystatin, primary, systemic, hATTR, and leading me into dementia, I read your stuff with much interest. Several others have various protein disease dX, and several have died of this crap. My own med history is at https://bit.Ly/1w7j4j8, Amyloidosis. These are tough disorders, and about all we can do is support one another. So hang in there, friend. We all understand some parts of your struggle, and some things just confuse us.
@oldkarl I’m amazed that your family is afflicted with this disease. Is it hereditary? I’m waiting to have genetic testing done. I worry that my children could have this disease too. Can I ask how old you and your sisters are? I am 49 yrs old and am having a hard time accepting the degeneration. I don’t know how much time I have left. I have fallen several times and hurt constantly from the injuries. I don’t know where to go to get support from others. I feel like I am the only one with atrophy.
@ldrake101 Yes, the degeneration is a rough one. I really hit the big time with degeneration at about your age. Lots of heart trouble, falling, muscle weakness, etc. I am 77 now, and my sisters (there were 6, now 5) clustered around me age-wise. Toughest thing I have had to do was find a doctor who would take this thing seriously. I was quite physically active until about age 45. Half-marathons occasionally, officiate football, backpack, etc. Probably the best support you will get is right here. Mine is hereditary, but it keeps its secrets hidden pretty well. What is hereditary is the fundamental fault in some specific gene that can mutate into some pretty wild characters. The specific mutation, at least for our family, is not spelled out in hereditary, but only the fault that allows the gene to take a flying leap into the mixmaster of a wild world. There, the gene can be mutated by a large variety of triggers which cause the mix master to turn on. Radon, Roundup, carbon monoxide, 2-3-d, DDT, smells, allergies, can be almost anything. My siblings and I grew up in the basement of our home, which was a large reservoir of Radon, and we used a lot of ddt, 2-4d, alfalfa hay, grain, etc. Well, and I kissed a lot of girls in those early years. That may have done it. I don’t know. Anyway, I am convince that the best thing I can do is to prepare myself to die. I also have several cancers, including prostate which the doc says will kill me within a couple years. Also stomach, esophageal, skin, etc. My friend Alan, as I mentioned earlier, did not find his atrophy until about age 75. He is still alive, but not doing well. But he has a beautiful wife who loves him dearly. That keeps him going. Well, keep writing, and some of us will try to write some. Send me a direct mail if you like so I will be sure to keep in touch. I live on the Oregon coast, about 100 yards from the ocean, at Yachats.
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