Cerebral Brain Atrophy: Anyone else out there?

@ldrake101, This makes sense! I guess I misunderstood your mention about the cane.
Rosemary

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 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.

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)

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.

@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?

@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.
Regards
Liz

@pec2884 It is good to hear from you. Thanks for sharing the FB information with our community! Teresa

Dear Colleen,
Has there been any progress in finding a reason for cerebral brain atrophy. Howard James was their in Jan. of 2015 and was seen by Dr. Matsomoto who gave him about 4 years to live. I have only connected with Liz in South Africa who has been diagnosed with this. Have there been any headway made for a reason for this or any type of a cure or an arrest of progression. He is now walking with a walker but now is beginning to fall even with walker. We are in our home in Homer, Alaska and will be here on a permanent basis.
Noreen ( wife of Howard James)