Suzanne Gallo
Forum Replies Created
-
<p style=”text-align: left;”>CCALS. The best patient caregiver centered organization my PALS and I have encountered. Best support. Best equipment donation. Best love. Can’t say enough positive things about CCALS, Ron Hoffman, and the entire staff. They are located, physically, in Falmouth Massachusetts. But their heart and soul is everywhere. We live in Delaware. Not a problem!</p>
-
I’ve been aware of Miami Body Science since my husband was diagnosed with ALS 3 years ago. My sweet dad passed from ALS 7 years ago. My dad went to the U Miami ALS clinic, but he moved on to a wonderful hospice in Key Largo FL
when my husband was diagnosed, after my dad passed, I read everything I could- about ALS, again. This time, I learned of Miami body science. We were living in the FL Keys. I thought it would be beneficial to go to Miami body science. We watched multiple zooms with Amy Jaramillo. She is knowledgeable. An educated, talking head. She doesn’t have ALS. She isn’t a CALS for her spouse PALS. She isn’t paying for her PALS to go to Miami. She isn’t making travel plans for her paralyzed PALS.
I just don’t understand how any PALS with ALS could actually make it to Miami body science without a million dollars, and/or a go fund me.
too much stress. -
Please do not attempt using a power chair on any type of uneven terrain. You may tip over I can only imagine a scooter would present the same challenge Important- avoid thick grass. You will spin wheels. You may have to be rescued- and rescuing is dangerous to PALS and CALS.
Bringing mud caked wheels into the house is not a positive thing.
Most PALS are not slow progressing, like Dagmar. Scooters are super temporary. Get a power chair ASAP. -
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 spending money on Relyvrio. She advised us to save our money, and use it for home health care. She said- no return on investment.
-
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 broaden awareness of patient, family, and caregiver care.
you must do as you wish, clinically, but as far as genuine care for you- and, your caregivers, please reach out to CCALS.
They have been the world to my PALS and I.
suzanne -
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 CALS, it gives me a break not to have to stretch out my hubby everyday. -
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 to sleep, after helping my PALS get settled back to sleep.
-
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 walking/rolling through the town, and along the boardwalk. Some folks just look away when they see someone cruising along in an electric wheelchair, but we did engage in some fun, and some meaningful conversation with folks asking about why Michael, who, for all intensive appearances, appears “normal”- is in a spiffy, neon yellow, compact, silent wheelchair. My next thing to do, is to get an “I Am ALS” tee shirt, and fit it over the back of the wheelchair. That will be a conversation starter!
When we got back to our house, (about a 2 hour easy scenic drive), our daughters had put up Happy Anniversary banners, set out tons of photos of Michael and I through the years, and baked us a cake!!
As a CALS, and wife who remains wildly in love with her PALS, I am so grateful we are having this special day! -
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. Cousins died young from other causes.
But my dad had ALS, he passed 4 years ago. He was tested for genetic form at Johns Hopkins- negative. I don’t think ALS is rare. -
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 sure that neurologist knows how close AMX0035 is to being approved by the FDA……
anyone have any luck appealing coverage of sodium phenylbutyrate?? We could sell our house, but, idk- where would we go?
-
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 trials are going on. The neuro doc said, he is not eligible. The notes from another neurologist at Penn, the one who gave us the ALS diagnosis, said that my PALS ALS started 3 years ago. This was because we guessed that he had been experiencing hand cramps for about 3 years. We had no idea that these hand cramps were at all related to ALS. Three years ago, our primary care doc told us that the hand cramps were arthritis.
So we were shocked, and saddened that revealing the “guessed” timing of 3 years ago for the hand cramps- would be the record timeline for the start of ALS. We thought that the trials used the date of diagnosis, not the “estimated” time of when the PALS began to notice hand cramps. A lot of people get hand cramps for many reasons.
So my PALS was shut out of ALL clinical trials, because the neurologist who made the diagnosis posed the start time as 3 years ago- effectively eliminating his chance of participating in clinical trials. Especially disturbing because this was our first ALS clinic. My PALS walked in. He had no breathing or swallowing issues. He had a slowly progressing disease. We are crushed.
My husband is a very engaging, super friendly 67 year old guy. My dad passed away from ALS 4 years ago. My dad didn’t have a chance to get into any trials: he lived in the Florida Keys, and wasn’t keen on traveling- and he was 78 at the time of diagnosis.
For my PALS and my first ALS clinic, we were prepared. When we were told that he could not participate in any clinical trials- it was a major set back for us. -
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 know. We were just set to retire, be grandparents, and travel. That’s changed now. Not just Covid- this is …..motor neuron disease.
We are going for a second opinion at U. Of Pennsylvania Medicine. It’s taking a long time for a diagnosis, likely because of Covid, and the holidays. I’m sick that it is taking 9 months for a diagnosis. Are we losing valuable time to get into a trial?
I just can’t believe it. My dad? And now my husband? Within 4 years?
I’m so ashamed to say how bad I feel. I don’t have the disease! But I feel so bad, shut down, and lost. Like, how can this happen? What did I do to have my dad, and then my husband of 31 years get this? I feel so guilty. Why am I the strong one? Maybe that is my answer. Has anyone else had their father, and then, 4 years later m their husband experience motor neuron disease? This is not familiar. This is chance. -
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