Suzanne Gallo

Relyvrio was exorbitantly expensive for us. Though my PALS is on Medicare, with AARP United Health Care supplemental, the copay was out of sight for us. Because we have savings, and make a small income each year from our financial status, we don’t qualify for any help. Our neurologist at Penn medicine ALS center of excellence, advised us against s…[Read more]

Amanda

i am so very very sorry that you have been diagnosed with ALS. Please know that I am extremely sad. I have been following your column sincd my husband was diagnosed about 3 years ago.
my father passed from ALS 6 years ago. Not familiar, but super lousy, just the same.
I suggest you contact Ron Hoffman, at CCALS.org. Please do this, to…[Read more]

Scotty

yes definitely taking a lot of supplements makes my PALS feel terrible. Dull, tired, kind of sickish-blah.
all the supplements are prescribed by a natural medicine PhD practitioner, with 40 years of practice,so it’s not like we are doing this on our own.
it is definarely discouraging

I take my PALS for PT 2-3 days per week, at NeuroFitness, a business specializing in movement disorders.
He is in a power chair most of the time, so he gets very stiff.
he enjoys the other patients at the PT business, so he gets a social visit as well.As long as we can keep up the trips, we will go- then transfer to home visits.
as a full time…[Read more]

I seriously can not imagine any animals to take care of. It’s all I can do to take care of my PALS. Sometimes we go to bed late. Sometimes we sleep late. We have had pets for 30 years of our married life: now we have just each other. This is enough. I cringe to think of letting out a dog early in the morning- just after I might have gotten back t…[Read more]

I am grateful that my PALS and I celebrated 32 years of marriage today, June 10. We took an overnight trip to Cape May, NJ. We stayed at the Chalfonte Hotel, the oldest, continuously operating hotel in Cape May- America’s first seaside resort. Our room was handicapped accessible. We brought along the Hawk electric wheelchair, and enjoyed w…[Read more]

Still awaiting the genetic test results from my PALS Michael’s cheek swab. Michael’s Dad had Parkinson’s Disease, and his paternal grandmother is a mystery to us, though we have been told that she spent the last years of her life bed-bound. We assumed it was dementia- but we don’t know for sure. Estranged family relationships on both sides for him…[Read more]

My PALS neurologist at Penn ALS clinic gave him a script for Sodium Phenylbutyrate. It was over $1000 copay to fill at Walgreens. He has Medicare and AARP UH supplemental and AARP UH pharmacy benefits. I was advised to appeal our insurers decision not to cover Sodium Phenylbutyrate. Ask for a second opinion on the denial from a neurologist- making…[Read more]

Ragnar, oh my god, this post hit the nail on the head for my husband, my Pals- and I. He was diagnosed on January 11, 2021. Our first clinical ALS appt was on March 4, 2021, at U of Penn. One of my first questions for the neurologist at the ALS clinic was- what clinical trials can my PALS participate in. This is U of Penn, where HEALY platform…[Read more]

Hi. I don’t have ALS, but my dad, at age 79 passed from this disease 4 years ago. I was one of his caretakers. I was with him when he died.
Now, my husband, aged 67, has  ( I just can’t say it, because he doesn’t have the spoken diagnosis…but he has had every test to rule out not……) a motor neuron disease. I’m pretty sure he has it. I kn…[Read more]