1. < Stroke & Cerebrovascular Diseases

Cerebellum Atrophy

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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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?

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2 replies
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
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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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.

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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

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lisapraska | @lisapraska | 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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Also MRI findings

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lisapraska | @lisapraska | 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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Developmental delays in all areas, hypotonia, unstable walking, speech impairments, not meeting milestones, 5 yrs old but memtally about 2 1/2to 3 yrs old.

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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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Hello Lisa, @lisapraska

I am so sorry to hear of your son's diagnosis! If you care to share more - what symptoms was your son experiencing that led to this diagnosis?

Teresa

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howardjames | @howardjames | Jul 27, 2017
In reply to @lisapraska "Noreen, did your husbsnd ever take dilantin for seizures?" + (show)
@lisapraska

Noreen, did your husbsnd ever take dilantin for seizures?

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Has never had any seizures. Doctor said he probably would not. But I always hesitate to leave him alone. I always make him have his phone in his pocket. Noreen

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lisapraska | @lisapraska | Jul 20, 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

Noreen, did your husbsnd ever take dilantin for seizures?

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