Hi Noreen,
Cerebral atrophy is a very rare condition, which is why I'm so grateful that you were able to connect with @dmkmom04 and @pec2884 here on Connect. @dmkmom04 has mild cerebral atrophy and @pec2884 has Multiple System Atrophy which involves cerebral atrophy.

Noreen, what questions would you like to ask them?

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

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.

Corticobasal syndrome is similar to what your husband have

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.

@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.

@oldkarl I know I won't live to see 60. I figure I have 5 yrs or less. I don't want to live with the inability to function or communicate. I am currently using a walker, sometimes a wheelchair as walking is so difficult some days. I lose my voice daily, the longest stretch was for 1/2 hr. I have difficulty swallowing some days. I haven't heard of anyone my age having cerebellum atrophy. The disease has been very progressive this year. I plan to use palliative care services this year. I don't want to be dependant on other people to care for me. By the way, I live near Boston, near the ocean too, but on the other side of the continent. I don't know how to send direct mail.