Degeneration of the Cerebellum

[kjs65]

My father has recently been diagnosed with Degeneration of the Cerebellum.  Is there a specialist in this field to help this type of patient?  This is a very sad disease.  It doesn't seem that many know much of the cause.  Is there any medications to slow the process?  What is the long term outlook for my dad?

[ash1966]

I am also 47 born in 1966. Although not 1965 as you are. My symptoms seem to be the same as you, balance and lack of coordination in my lower extremities. I have also learnt to manage myself as you have. I try and exercise a lot although I can not run anymore so cardio training is lots of walking and incline on a treadmill. I find the best time for me is first thing in the morning I seem to be more fresh and can focus more. Like you I was diagnosed with this thing 8 years ago, I have a MRI every 12 months and lately no change to my cerebellum has occured in the last 2 years.
My question is have you had any advice on trying to improve your balance etc..Would love to hear from you.

Ash - ashley.***@****

[Hank1965]

I am a 47 year old male. I first noticed signs that something was wrong with my balance and leg coordination while running about 7 years ago. The symptoms progressively worsened over the next few years. I went to a neurologist 3 years ago and through a series of simple in office tests was given an unofficial diagnosis of degeneration of the cerebellum. An MRI was suggested but due to fears of insurance and employment reprisals and that there is no current cure for this disease, I opted to not have the MRI.

Over the last 2 years the symptoms have slowed but definitely not gone away. I have learned how to adapt to the decreased balance - all the time and slurred speech - usually when tired, by slowing down my movements, exercising at the gym, staying well rested, eating foods high in anti-oxidants, and avoiding alcohol. I have also learned that this can be a hereditary  disease. My mother who is in her 80's has been diagnosed with this disease and has to use a walker. Now that I think back, I think she may have demonstrated symptoms in her 40's.

Both our minds seem unaffected and my muscles have not lost strength. It seems to be centered around balance and coordination of the lower extremities.

I am hopeful that my children do not inherit this disease and that early detection becomes possible.

[Jazhzay]

My Father was diagnosed with this disease back in 2001. The firdt thing that was a visible symptom was his equalibrium was out of whack. He then went from a cane to a walker, from a walker to a wheelchair. During this period his speech was impaired. He was still aware of what was around him but its like his body slowly began to give up. He then began to loose control of his bowls and needed help being cleaned. This is a very slow process, and for my dad it took 6 years before he passed of heart failure. My heart goes out to the families that have to go through this with a loved one. It is a lot to swallow when the doctors have no clue on how this disease is formed and why. 6 years of doctors visits and the Mayo clinic and NO ONE had answers. Best of luck and best wishes, don't give up there has to be someone out there who has answers.

[mickimouse]

My husband has recently been diagnosed with cerebellum degeneration and he is having a lot of trouble eating.  He can talk well and in a short amount of time he starts slurring his words.  When he starts to eat, he can only get a few mouthfuls and then cannot talk without slurring badly.  He has to stop and rest a while and then continue to eat.  I'm wondering if anyone has had this problem with their cerrebellum degeneration.  It is so frustrating and no ones seems to know what to do.  Any comment from anyone would be appreciated if you have this problem.

[Abhijeet Deshmukh, MD]

Hello.

Cerebellar degeneration is a blanket term. There are many causes that lead to degeneration of the cerebellum. Some of these are Alcohol, drugs (Lithium), congenital malformations and degenerative disorders.

There may not be a cure, but there surely is treatment available. This depends on the cause behind the degeneration. The long term outlook also depends on the cause.

Regards

[Kimber63]

My father has this disease also and has even been to Cleveland clinic to see specialist and there is no treatment for it.  It is however we are being told there is it is very slow moving.

Yes it is a very sad disease.