New Diagnosis

[crwagpac98]

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]

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]

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]

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]

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]

I’m sorry for the diagnosis. We’re here for support.