ALS Therapists? For ALS patients and families???

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vicmaine

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Last Fall, I Started out with a floppy right foot and after many March 2022 neurology visits, EMGs, MRI, as of 5/2/2022, a genetic test came back positive for the dominant ALS gene.

Sincethen, I’ve been on what I call a F**k ALS tour, first with Disney, Camping in Eastport, ME and now in DC to visit a dear friend. Tomorrow, I fly back home to Maine on 5/24.

On 5/26, I see the neurologist who was the one who called me with the genetic outcome. I cussed him out royally when he called with that news! He will tell us about the drugs, the treatment, the trials, and all the rest. I get angry just thinking about that appointment.

Why am I so angry? So Sad? I need to speak to a ALS trained therapist asap, but I don’t know where to look.

To add, I’ve been plant based for 7 years now and am very healthy and trim. I am curious how a plant based diet will impact ALS, if at all.
I just don’t know how long I have and that fills me with anxiety, sadness, and anger.

Any help would be appreciated.
Victoria
 

lgelb

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Hi, Victoria, just want to double check that you were diagnosed on the basis of an EMG, tests, exams, etc. and not on the basis of carrying a particular gene, which, of course, is not the same thing. Also, we always advise a second opinion since this is a life-changing diagnosis as you have pointed out.

As for therapy, your local ALS Association may have referrals for you, and it does not take an ALS-trained therapist, per se, to help you -- many therapists help people with fatal illnesses. Your primary care doc or ALS clinic may also have suggestions.

Best,
Laurie
 

Nikki J

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I am sorry. I don’t know of any ALS specific counselors. Maybe your clinic or ALSA can recommend people their patients have had success with. At some point too you should probably talk to a genetic counselor ( they do specialize there are a couple at mgh) about your specific mutation ( which one if you don’t mind sharing). There is considerable hope for future generation. Mgh has a prevent als initiative currently studying mutation carriers but with a view to early intervention. There is considerable advocacy in the FALS community to push this along.

re diet we don’t really know but the first advice with Als is usually don’t lose weight. There is also research indicating the chibby progress slower. However every PALS is unique and there are certainly many exceptions both ways.

totally agree that second opinions are important both for diagnosis confirmation and for another view on how you approach things
 
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