-
Suzanne Gallo changed their profile picture 2 months ago
-
Suzanne Gallo replied to the topic Support Animals for ALS in the forum Living With ALS 10 months, 2 weeks 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]
-
Suzanne Gallo replied to the topic Member Check In in the forum Living With ALS 11 months, 2 weeks 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]
-
Suzanne Gallo replied to the topic Genetic Mutation or Sporadic ALS in the forum Living With ALS 1 year, 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]
-
Suzanne Gallo replied to the topic What's the latest news on AMX0035? in the forum Research Topics 1 year, 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]
-
Suzanne Gallo replied to the topic Do ALS clinical trials exclude too many pALS? in the forum Research Topics 1 year, 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]
-
Dagmar Munn and
Suzanne Gallo are now friends 1 year, 4 months ago
-
Suzanne Gallo changed their profile picture 1 year, 4 months ago
-
Suzanne Gallo changed their profile picture 1 year, 4 months ago
-
Amanda and
Suzanne Gallo are now friends 1 year, 4 months ago
-
Suzanne Gallo posted a new activity comment 1 year, 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]
-
-
Suzanne Gallo replied to the topic Asking for Support in the forum Living With ALS 1 year, 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] -
Suzanne Gallo became a registered member 1 year, 4 months ago
-
Hello Suzanne,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]
-
Hello Suzanne, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I l…[Read more]
-
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]
-
-