New Diagnosis

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crwagpac98

New member
Joined
Feb 20, 2020
Messages
2
Reason
CALS
Diagnosis
02/2020
Country
US
State
WV
City
Philippi
Hello. First post. My 65 y/o husband diagnosed with Brait-Fahn-Schwarz disease 2 weeks ago at Cleveland Clinic. It’s basically Parkinson’s disease which he has battled for 3 years and then developed weakness and atrophy of legs and hand. He saw ALS specialists and confirmed through EMG. The progression of the ALS follows the same course. Has anyone else had this disease on this forum? It’s very rare I think. We are still trying to absorb the shock but we are devastated. My husband is in denial I think and I’m trying to be strong but it is very hard. This forum has helped me a lot to see how other PALs and CALs cope with this horrible disease. Thank you!
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,889
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am sorry you have had to find us. My understanding is that people with this DO have ALS and are given the label of Brait-Fahn-Schwartz when they, as your husband did, have PD first and then ALS follows. I make this distinction because we ask that people who have other diseases, even when similar issues, only lurk and do not post. Since that is ( I think) not the case you are welcome and I just wanted to clarify for others reading.

I don’t know anyone here with this but hope we can help you anyway
 

crwagpac98

New member
Joined
Feb 20, 2020
Messages
2
Reason
CALS
Diagnosis
02/2020
Country
US
State
WV
City
Philippi
Thank you for kind reply. They are starting him on Riluzole and he will also continue with the PD meds including Levodopa. So far it seems to be limb onset with no Bulbar symptoms yet but he will get evaluated at the ALS clinic in April. I’m sure we will be needing plenty of advise and support throughout this journey.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,449
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Very sorry to hear about your husband, WV. We'll be here, however we can help. Denial is a normal stage whether someone has other major illnesses or not. Sometime in the near future when the worst shock is past, you might sit with your husband and revise his/your advance directive and powers of attorney.

Best,
Laurie
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
814
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
So sorry to hear of your husband's diagnoses. I hope you find all the support you need here, it's a great community.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,747
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
I’m sorry for the diagnosis. We’re here for support.
 
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