Bulbar onset

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suziQ

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Joined
Oct 30, 2021
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3
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PALS
Diagnosis
10/2021
Country
US
State
MI
New, overwhelmed. Diagnosis confirmed with second opinion this past Tuesday. Started rilutek yesterday. no known side effects right now. The doctor who initially diagnosed me and will be treating me also mentioned Radicava. The doctor who gave me the second opinion said she wasn't impressed with it, wondering what anyone who has received it thinks of it.

Currently working but planning to take disability after the first of the year if not sooner. Onset is bulbar but i can still speak, eat and breath well.

Live alone in a third floor apartment but planning on moving to a first floor no stairs apartment so i don't have to move again as this progresses.

redoing my wlll and stuff after the first of the year.

any info is appreciated particularly from those dealing with this themselves.
 

Nikki J

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Mar 22, 2012
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PALS
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04/2014
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Very sorry.

glad you are being proactive. Moving early is definitely the way to go. Remember that stairs are just the tip of the iceberg to accessibility. Also know that not all accessible apartments are. I was shown one with a roll in shower, low closet rods and wide door ways but no roll under sink

I had been diagnosed a long time when radicava came out and it was felt to help early in fast progressing disease and had been studied in Japan where my form of FALS is rare. I didn’t think the burden of infusions worth it for me

people’s experiences will vary but like riluzole it is believed to slow disease. It is always hard to say if something works because you don’t know how it would have gone. In your place I would give it a shot but I am not you

were you offered genetic testing? Were clinical trials discussed?
 

affected

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Apr 26, 2013
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13,922
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Lost a loved one
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05/2013
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OZ
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lala land
Sorry to see you join us here.
I totally echo Nikki - anything you can get organised, decided, and in place now while you are early in all progression, the better.
Lots of resources here to help you figure out what to check for in 'accessible' places to live, and what you might want to consider sorting first.
As well as your will, consider who you would trust to have your EPOA in case you need someone making decisions for you at some point.

Don't push yourself to work everything out this week though. You have a shock to work through.
Search here with the option at the top, and ask questions!
 

Nikki J

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Joined
Mar 22, 2012
Messages
11,166
Reason
PALS
Diagnosis
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Oh and start voice banking asap. it gets difficult then impossible faster than you expect. I know too many people who waited and now regret
 

brucker1960

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Joined
Mar 15, 2021
Messages
14
Reason
CALS
Diagnosis
05/2021
Country
US
State
WI
City
Rhinelander
I support getting your voice banking done quickly. We were stalled so long in getting a referral to a neurologist that my hubby had lost his voice by the time of the diagnosis. We didn't know about voice banking and it makes me equally mad and sad at the same time. There is nothing anyone can say to you that will soften the blow but I hope it will help knowing there are so many of us to support you.
 

kellysal

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Joined
Oct 26, 2020
Messages
32
Reason
PALS
Diagnosis
10/2020
Country
US
State
FL
City
West palm beach
Yes I agree with Nikki! She told me to do it last year and I procrastinated. My speech was fine then it went downhill quickly I wish I had done it when my speech was still good!
 
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