@susanarchitect
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Susan replied to the topic Genetic Mutations and Muscle cramps? in the forum Living With ALS 11 months ago
yes C9 gene and muscle cramps..first in calves then hands
My late dad also C9 had bad leg cramps
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Susan replied to the topic Home renovations and ALS in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year ago
We are adding an elevator and making bathroom and kitchen more accessible. no step shower.
a nice front porch with ramp and deck too.
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Dagmar Munn and
Susan are now friends 1 year ago
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Susan replied to the topic Have you traveled soon after your diagnosis? in the forum Living With ALS 1 year, 2 months ago
Yes traveled with cane and scooter but since March 2020 home bound.
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Susan replied to the topic Rilozole experience? in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 1 year, 2 months ago
I took it for 6 weeks then bad side effects, light headed, distressed stomach, and weakness and more..Doctor said to stop so I did.
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Susan replied to the topic Information or results on RILUZOLE in the forum Research Topics 1 year, 3 months ago
I took RILUZOLE for 6 weeks and the side effects were awful. so my neurologist told me to stop and I felt much better.
Susan
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Susan replied to the topic Do you experience muscle twitching? in the forum Living With ALS 1 year, 4 months ago
I did have some but then I stopped caffeine and ate well and gluten free too. Â So my body is calm now
also B12 and D3 and other vitamins and zinc.
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Susan replied to the topic Do you experience muscle twitching? in the forum Living With ALS 1 year, 4 months ago
I did have some but then I stopped caffeine and ate well and gluten free too. Â So my body is calm now
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Kathryn F. Kennedy and
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Danielle Uskovic and
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Amanda and
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Susan replied to the topic Does ALS slow you down? in the forum Living With ALS 1 year, 4 months ago
oh yes, I was diagnosed 11/19 and in my legs and some weakness in arms but still functioning…Getting dress takes 10 x’s as long but I’m very careful too. Making Lunch takes awhile but I’m OK with ALS time so far.
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Susan replied to the topic ALS Awareness Month Spotlight: Susan Gray in the forum ALS Awareness Month 1 year, 4 months ago
Hi Susan,
I noticed my left foot slapping in October/November of 2017. I was misdiagnosed with Lyme, the test and Positive for ALS. I was with a cane for a good year, then a walker and wheelchair. As a hiker, I purchase a Grit Freedom Chair, that is good on hills and dirt paths. Keep moving as long as you can!
I’m a Susan too.
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Susan posted a new activity comment 1 year, 11 months ago
Thank you!
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Hello Susan, Thank you for joining the group! I have the SOD1 gene mutation, but do not have ALS yet. I have volunteered for several studies, one (pre-fALS out of the University of Miami) is ongoing. I go at least once a year and do a lot of the tests that they do when they are trying to rule ALS in or out. They also collect blood, urine and…[Read more]
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Susan posted a new activity comment 1 year, 11 months ago
Hello Dagmar,
Thank you. I recently found out that I have the C9orf72 gene with too many repeats. So it fALS for me and FTD for my younger brother in his 50’s… ( my father FTD in his 70’s and his father ALS in his 50’s) I would be very interest with other with this gene and what they have done. Thank you.-
Amanda, who shares Forum moderating with me is a fALS. She will be a good resource and helpful support for you. You’ll be hearing from her soon. 🙂
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Thank you!
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Hello Susan, Thank you for joining the group! I have the SOD1 gene mutation, but do not have ALS yet. I have volunteered for several studies, one (pre-fALS out of the University of Miami) is ongoing. I go at least once a year and do a lot of the tests that they do when they are trying to rule ALS in or out. They also collect blood, urine and…[Read more]
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Susan became a registered member 1 year, 11 months ago
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Hello Susan,
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. If you have any questions, concerns or even…[Read more]-
Hello Dagmar,
Thank you. I recently found out that I have the C9orf72 gene with too many repeats. So it fALS for me and FTD for my younger brother in his 50’s… ( my father FTD in his 70’s and his father ALS in his 50’s) I would be very interest with other with this gene and what they have done. Thank you.-
Amanda, who shares Forum moderating with me is a fALS. She will be a good resource and helpful support for you. You’ll be hearing from her soon. 🙂
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Thank you!
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Hello Susan, Thank you for joining the group! I have the SOD1 gene mutation, but do not have ALS yet. I have volunteered for several studies, one (pre-fALS out of the University of Miami) is ongoing. I go at least once a year and do a lot of the tests that they do when they are trying to rule ALS in or out. They also collect blood, urine and…[Read more]
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