@carker
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Amanda started the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 1 week, 1 day ago
On our forum, we try to tackle all things ALS, even though some topics are scary and challenging to discuss. We all know that ALS is a terminal illness even though many pALS are living longer. We try to focus on having a good quality of life now!
Everyone, pALS and otherwise, have to face our mortality. When you are diagnosed with a terminal…[Read more]
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Amanda started the topic What Research Should Be Focused On? in the forum Research Topics 1 week, 3 days ago
ALS research is important to all of us in the ALS community. I know we all would agree that finding a cure for ALS would be our top research wish. We also know that ALS is what I refer to as a “catch-all” term, meaning that there may be different causes that lead to what is diagnosed as ALS. Outside of finding a cure (as I said, that’s our numbe…[Read more]
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Susan replied to the topic How Do You “Take a Break” From Caregiving? in the forum A Forum for ALS Caregivers 1 week, 3 days ago
I wish my partner, John, of 11 years could have a break! I have lost the use of my legs, I fall a lot, most recent, broken sternum. I am in a wheelchair but fell during a kitchen sink mis hap. He is 24/7 on duty, doesn’t sleep well, or eat, he’s too busy caring for me. I have a large family, no help! My older Sister lives directly across the stre…[Read more]
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Amanda replied to the topic How Do You “Take a Break” From Caregiving? in the forum A Forum for ALS Caregivers 2 weeks ago
George,
That is wonderful to hear for the both of you. -
Amanda started the topic What Research Do You Think Should Be Targeted? in the forum Research Topics 2 weeks, 1 day ago
ALS research is important to all of us in the ALS community. I know we all would agree that finding a cure for ALS would be our top research wish. We also know that ALS is what I refer to as a “catch-all” term, meaning that there may be different causes that lead to what is diagnosed as ALS. Outside of finding a cure (as I said, that’s our numbe…[Read more]
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Amanda replied to the topic In Miami no clinical trials here in the forum Research Topics 2 weeks, 6 days ago
@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 -
Susan and
Judy Weger are now friends 2 weeks, 6 days ago
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Susan replied to the topic How Has Your ALS Changed How You Exercise? in the forum Living With ALS 3 weeks ago
I was a gym regular, toned and strong, then ALS came along. Now I do physical therapy to keep what strength I still have, very little. In a wheelchair no for 4 months or so, but I do the PT to keep my upper body strength, and I always feel tired and happy after I work out 💪
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Susan and
Duane are now friends 3 weeks ago-
Hello 👋
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Susan and
Jean-Pierre Le Rouzic are now friends 3 weeks ago-
Hi 👋
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Susan and
Dagmar Munn are now friends 3 weeks ago -
Susan and
Carolyn Barry are now friends 3 weeks ago -
Susan and
Donna Caruso are now friends 3 weeks ago
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Susan and
Nina are now friends 3 weeks ago
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Susan and
Roxanne Kusske are now friends 3 weeks ago -
Susan and
Meri are now friends 3 weeks, 1 day ago
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Susan and
svarog are now friends 3 weeks, 1 day ago
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Susan and
MaryConnolly are now friends 3 weeks, 1 day ago -
Susan and
Len Jax are now friends 3 weeks, 1 day ago
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Susan changed their profile picture 3 weeks, 1 day ago
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