1. < Stroke & Cerebrovascular Diseases

Cerebral Brain Atrophy: Anyone else out there?

Posted by howardjames @howardjames, Jun 5, 2016

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.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 28, 2017
In reply to @lisapraska "Hi Noreen , my name is Lisa, my son who is 5 yrs old and was..." + (show)
@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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@lisapraska How heart-breaking for you! Is there any type of physical therapy that can help with his walking, gait or speech?

Teresa

REPLY
lisapraska | @lisapraska | Aug 14, 2017
In reply to @lisapraska "Hi Noreen , my name is Lisa, my son who is 5 yrs old and was..." + (show)
@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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He is getting occupational therapy, speech therapy, physical therapy, basically any type of therapy there is.

REPLY
dkeg | @dkeg | Aug 25, 2017
In reply to @howardjames "Dear Colleen, Has there been any progress in finding a reason for cerebral brain atrophy. Howard..." + (show)
@howardjames

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)

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Hi. Based on a couple MRI's, I have severe cerebellar atrophy related to an undetermined disease. My balance and coordination were less a year or so ago. I have been told and have read this condition is incurable and only the symptoms are treatable. I have tried everything I am aware of to slow the progression or make this go away. I am currently seeing a natural healing specialist and feel as this is helping, along with brain restore medication. I also have a speech impairment (dysarthria) and very vivid (I believe they are real at the time) dreams and have had hallucinations, along with wide gait and breathing problems (currently on oxygen). My prayers go to all involved in this terrible condition.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 25, 2017
In reply to @howardjames "Dear Colleen, Has there been any progress in finding a reason for cerebral brain atrophy. Howard..." + (show)
@howardjames

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)

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Welcome to Connect, @dkeg. We're glad you found this discussion group. In addition to @howardjames (Noreen) who's husband has Cerebral Atrophy and @lisapraska who's young son is living with it, I'd like to introduce you to @pec2884 (Liz) who lives with cerebellar atrophy. You can read more conversations between Liz and Noreen here:

- Cerebellum Brain Atrophy https://connect.mayoclinic.org/discussion/cerebellum-atrophy/

DKeg, the dreams and hallucinations must be troubling. How do they affect you and how to you cope with that?

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1 reply
lisapraska | @lisapraska | Aug 30, 2017
In reply to @howardjames "Dear Colleen, Has there been any progress in finding a reason for cerebral brain atrophy. Howard..." + (show)
@howardjames

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)

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Just got a call today from geonomics dept., will hear results on large panel on November 6th, why such a long wait?

REPLY
2 replies
lisapraska | @lisapraska | Sep 6, 2017
In reply to @lisapraska "Just got a call today from geonomics dept., will hear results on large panel on November..." + (show)
@lisapraska

Just got a call today from geonomics dept., will hear results on large panel on November 6th, why such a long wait?

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@hopeful33250

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 7, 2017
In reply to @lisapraska "Just got a call today from geonomics dept., will hear results on large panel on November..." + (show)
@lisapraska

Just got a call today from geonomics dept., will hear results on large panel on November 6th, why such a long wait?

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Hello Lisa, @lisapraska

It looks like you may have started a post to me. You can try again if you got interrupted.

Teresa

REPLY
lisapraska | @lisapraska | Sep 7, 2017
In reply to @howardjames "Dear Colleen, Has there been any progress in finding a reason for cerebral brain atrophy. Howard..." + (show)
@howardjames

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)

Jump to this post

@hopeful33250, my son's geonomic results are in from his Large panel testing we have to go back to the Mayo for the results on November 6th, why is there such a long wait? I think the wait is intense and very stressful. Also I was told before the large panel came back, if the results are not good we would be called back to the clinic for the results. This is a very stressful time for our family.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 7, 2017
In reply to @howardjames "Dear Colleen, Has there been any progress in finding a reason for cerebral brain atrophy. Howard..." + (show)
@howardjames

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)

Jump to this post

Hello Lisa @lisapraska

I can only imagine what a difficult time this must be for you and your family. I cannot answer the question as to why the wait is so long. Have you spoke with the department that does the genomic testing? Perhaps they can provide you some reason for the long wait.

I'm going to invite, @colleenyoung, into this discussion as well. Perhaps she can shed some light on this.

Teresa

REPLY
2 replies
lisapraska | @lisapraska | Sep 7, 2017
In reply to @hopeful33250 "Hello Lisa @lisapraska I can only imagine what a difficult time this must be for you..." + (show)
@hopeful33250

Hello Lisa @lisapraska

I can only imagine what a difficult time this must be for you and your family. I cannot answer the question as to why the wait is so long. Have you spoke with the department that does the genomic testing? Perhaps they can provide you some reason for the long wait.

I'm going to invite, @colleenyoung, into this discussion as well. Perhaps she can shed some light on this.

Teresa

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They couldn't tell me anything over the phone.

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