@suzannegallo
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Suzanne Gallo replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 3 weeks, 2 days ago
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 o…[Read more]
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Suzanne Gallo replied to the topic Scooter recommendations? in the forum Mobility Aides, Assistive Technology and Medical Equipment 3 months, 2 weeks ago
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 t…[Read more] -
Suzanne Gallo replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 4 months, 3 weeks ago
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]
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Suzanne Gallo replied to the topic Toferson in the forum Research Topics 5 months, 1 week ago
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]-
Hey Suzanne,
I was going to email you today. I wanted you to hear the information from me. I will definitely reach out to CCALS. It’s very, very early for me. They were able to make a diagnosis much earlier than in many cases because I’ve been volunteering or the Pre-fALS study for a long time. I’m fully functioning right now and planning on…[Read more]
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Suzanne Gallo posted an update 6 months, 1 week ago
60 year old man with ALS, dances at his daughters wedding, following LHI treatment, …… and hikes through Italy. I find it totally disgusting that ALS news today promoted the Lifestyle Healing Institute in Naples Florida. Does anyone else agree? I feel that I just can not trust ALS News Today. This is the second time I have picked up a planted pro…[Read more]
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Suzanne Gallo replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 8 months, 2 weeks ago
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 -
Shannon Halstead and
Suzanne Gallo are now friends 10 months, 2 weeks ago
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Suzanne Gallo replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 10 months, 3 weeks ago
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] -
Suzanne Gallo changed their profile picture 1 year, 2 months ago
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Suzanne Gallo replied to the topic Support Animals for ALS in the forum Living With ALS 1 year, 10 months ago
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]
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Suzanne Gallo replied to the topic Member Check In in the forum Living With ALS 1 year, 11 months ago
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]
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Suzanne Gallo replied to the topic Genetic Mutation or Sporadic ALS in the forum Living With ALS 2 years, 1 month ago
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]
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Suzanne Gallo replied to the topic What's the latest news on AMX0035? in the forum Research Topics 2 years, 1 month ago
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]
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Suzanne Gallo replied to the topic Do ALS clinical trials exclude too many pALS? in the forum Research Topics 2 years, 2 months ago
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]
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Dagmar Munn and
Suzanne Gallo are now friends 2 years, 4 months ago
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Suzanne Gallo changed their profile picture 2 years, 4 months ago
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Suzanne Gallo changed their profile picture 2 years, 4 months ago
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Amanda and
Suzanne Gallo are now friends 2 years, 4 months ago
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Suzanne Gallo posted a new activity comment 2 years, 4 months ago
Hi Amanda
Thanks for your warm welcome. My husband is in the process of diagnosis. My daughters and I noticed that he was walking funny late last spring. He was loosing strength, and was noticeably loosing muscle mass in his legs. With gentle persuasion, he contacted our family doc. He had a virtual appt, so no hands on exam, but he got a script…[Read more]-
Suzanne,
My heart goes out to you. That is so much stress for one person to experience. I hope and pray that your husband’s ALS diagnoses does not come back positive. It is a long road hard road as you already know. It sounds like you are a pillar of strength although I’m sure you don’t always feel that way.
I doubt you are losing time to get…[Read more]
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Suzanne Gallo replied to the topic Asking for Support in the forum Living With ALS 2 years, 4 months ago
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] - Load More
Thank you for your input Suzanne. You bring up some key points.
Amanda