Frankie a reex

George,
That is wonderful to hear for the both of you.

Pat, I’m glad to know they were of help.

Thank you for sharing your situation, George. It sounds like you are finding ways to take care of yourself while taking good care of your partner. 53 years together is certainly a milestone. Best wishes to you both.

Lisa – I am happy to read that you have found a regimen that works for you. But, I need to point out that “RCH4” is yet an unproven treatment for ALS. Also, generalizing the long-term effects of Riluzole and Radicava to only “3 months” is your opinion only…. for example, I have taken Riluzole for the past 12 years (way beyond the 3 months…[Read more]

@Judy,
Where are you going? What symptoms are you trying to address and with what medication? Did they provide a reason to why they won’t provide a prescription? Perhaps there is another doctor that can provide you with the medications.
Amanda

Pat, over the past years of my ALS I’ve had to visit the dentist several times – – replacing a filling that fell out and having caps put on several teeth. Initially, I was so worried about choking… having to tilt back in the chair and having water sprayed in my mouth (visions of the awfulness of waterboarding!).

But I found out that modern…[Read more]

Well said, Mary. Well said. I agree that since we don’t have exact twins of ourselves, to serve as the “control,” we have no way of knowing exactly what combination of treatments and therapies work for our body. Trial and error, doing your research, and listening to your body seem to be the only guides for us.

Lynn, I have been taking Riluzole for 12 years now – – no side effects at all – -and, I’m still here 😉 …which to me, says it’s doing something positive.

How do you know that your husband’s fall was due to the Riluzole? Having ALS is a life lesson in the adage: “association does not necessarily mean causation.” What else is he taking or doing…[Read more]

From reading everyone’s responses, I think we “former fitness devotees” have discovered that we now need to make adjustments – – in duration, frequency, and type of exercise. It’s also an ego adjustment too; to not get caught up in comparing what we used to be able to do. Our bodies need daily movement… it doesn’t have to be traditional…[Read more]

Andrew, that is good news about your recent EMG and that your neurologist explained and reassured you. I’m glad our forum members could offer you insight and support. Best wishes on your road to finding a diagnosis.

Bravo Bill! You certainly are maintaining your physical activity – – along with a well-thought-out transition plan.

London Marathon in October! And hand-cycling in the 2023 Boston Marathon! Those are some fantastic goals! Go for it 😉

John, the one thing I’ve learned from reading our forum member’s comments – – is that we all have slightly different variations of similar symptoms. That said, my own experience was to have achy pain in my shin and thigh of the leg that had foot drop. This was during my first year. But the combination of medication, regular range-of-motion…[Read more]

@ Mike and @John,

First, thank you for sharing your stories. I am glad that you found the forums a safe place to share and process some of what you are both experiencing.  As you can see, our online community is amazingly supportive. Also, you know that you are not alone in dealing with some doctors who are not well informed about ALS and in my…[Read more]