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 | 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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@lisapraska

I am sorry for the wait. Could you ask to be put on a wait list in case an earlier appointment becomes available?

Teresa

REPLY
oldkarl | @oldkarl | Sep 7, 2017
In reply to @lisapraska "@hopeful33250, my son's geonomic results are in from his Large panel testing we have to go..." + (show)
@lisapraska

@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.

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I, too, think that the whole Mayo system does a poor job of pushing the patients' calendars along. I went there for a two week visit to find the root of my problems, which has been a long term bout with Amyloidosis. I did a few other tests, none of which made any sense to me, but I am not very knowledgeable in these things. After over 100 days of expense and corporate excuses, I finally got to see a hematologist. And almost a year later, I still do not have a straight answer. Hang in there, and be hopeful.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | 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)

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Hi Lisa,
I'd like to bring @fernandavidigal and @jennsprung into this discussion. They each have a child with rare genetic disorders and have had genomic testing done. They will certainly be able to relate to the stress of waiting for results, and may be able to shed some light on how long they had to wait and how they coped. You might like to read more about these discussions to connect with other parents of children with special needs.
https://connect.mayoclinic.org/discussion/anyone-with-keutel-syndrome/
https://connect.mayoclinic.org/discussion/mother-of-special-need-children-losing-her-mind/

REPLY
lisapraska | @lisapraska | Sep 27, 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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@howardjames , we go back to the Mayo Clinic to find out his Large panel testing results on Nov. 6th, wouldn't tell us anything over the phone..pretty nervous

REPLY
howardjames | @howardjames | Oct 8, 2017
In reply to @pec2884 "Hi Noreen. Daughter has been there for 25 yrs. We have often visited and once I..." + (show)
@pec2884

Hi Noreen. Daughter has been there for 25 yrs. We have often visited and once I remember driving through Swift Current. Having a time line like your husband has is upsetting. Is he aware of it or only you. Liz

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Dear Liz,
I haven't heard from you in a long time!!! Just a note to tell you that we are now living in Homer, Alaska. We are in our rainy season and it's cloudy and overcast almost every day. It is depressing but we have bought a special light that Alaskans sit under to give sunlight and stop any depression which can happen. We will only get 4 hours of sunshine during the month of December. This will be our first winter here. We have sold our home in Michigan and will be living here full time. At least our daughter and family are only two hours away from us. She has 3 children and we enjoy going to their music recitals. I envy you living in S. Africa which is warm.
How are you doing? Have you progressed in the cerebral atrophy? My husband is still walking with a walker but sometimes he will get dizzy and just fall backwards. I do have trouble understanding him but he is patient and will repeat what he says. He still can bathe himself and we have a walk-in shower that we have a stool in. I also use the stool as I have a bad back that gives me pain. It's the pits getting old!!! It is not for sissies.
I would love to write to you and send you a postcard from Alaska. I don't know if you can post your address! But you could leave it at my email address.
Thinking of you,
Noreen ( wife of HowardJames)

REPLY
Liz Horne | @pec2884 | Oct 10, 2017
In reply to @pec2884 "Hi Noreen. Daughter has been there for 25 yrs. We have often visited and once I..." + (show)
@pec2884

Hi Noreen. Daughter has been there for 25 yrs. We have often visited and once I remember driving through Swift Current. Having a time line like your husband has is upsetting. Is he aware of it or only you. Liz

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HI Noreen,I have been a bit quiet of late. I think I have joined too many sites and am not keeping up with all of them. I do admire your move. Very brave but the compensation of having family near must give you joy. I don't think I could survive with all the rain and only 4 hours of sunshine in December. My duvet is very snug in our winter and I love a cuddle but your extremes would be too much.

It is a mystery how this cerebral atrophy has such different symptoms in different people. I am dizzy and clumsy and topple sometimes but my speech is not affected yet. We have just started altering our bathroom to create a wet walk-in shower and room will be wheelchair friendly. Thinking ahead.

We have had another blow. My husband has to have a radical bladder removal due to cancer and adjust to a permanent bag. Such a psychological adjustment for him.

I would love to see a postcard.
Best wishes to Howard.
Liz

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 11, 2017
In reply to @pec2884 "Hi Noreen. Daughter has been there for 25 yrs. We have often visited and once I..." + (show)
@pec2884

Hi Noreen. Daughter has been there for 25 yrs. We have often visited and once I remember driving through Swift Current. Having a time line like your husband has is upsetting. Is he aware of it or only you. Liz

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Hi Liz,
I've removed your home address from the public forum. It is safer not to share personal contact information on a public site. You can send Noreen your postal address by using the secure private messaging. To send a private message:
1. Click on the @username of the person you want to message.
2. Click Send Private Message.

REPLY
lisapraska | @lisapraska | Oct 24, 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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@howardjames , Hi Noreen it's Lisa Praska, my son who is 5 has cerebellar atrophy, we go back to the Mayo on Nov 6th for his genomic large panel results, he was just in for his yearly eye exam and his vision has gotten quite a bit worse, is this to be expected ?
Sincerely,
Lisa Praska

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 24, 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

Hi Lisa,
I'm sorry to hear that your son's vision has gotten quite a bit worse. I'm also tagging @pec2884. Liz, has your eye sight been affected as a result of Multiple System Atrophy?

Lisa, I'm thinking of you as you get through the final stretch of waiting for Nov 6.

REPLY
oldkarl | @oldkarl | Oct 27, 2017
In reply to @howardjames "Dear Colleen, This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his..." + (show)
@howardjames

Dear Colleen,
This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his diagnosis of Cerebellum Brian Atrophy with only 3 to 4 years to live. This took place in Feb. of 2015. I have left messages here but I get no response of anyone having this problem. He is now walking with a cane so it is progressing. He will move on to a walker and then be in a wheelchair. This affects his balance and speech. He doesn't feel dizzy but he will loose his balance and fall. He is very hard to understand.
Is there any one out there who has this diagnosis or is it very rare?
His wife, Noreen

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@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.

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