Gigi
Forum Replies Created
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I am still very mobile with a cane and sometimes AFO’s. Since being diagnosed I have cold feet most of the year. Not typically in the summer in the Midwest. When I asked my doctors they said they had not heard of anyone with cold feet as a symptom. Interesting to find out there are people like me out there. For about 9 months out of the year I wear foot warmers in my shoes. Little Hotties is one brand I like. These help tremendously. I usually buy them on Amazon or at Costco.
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Hello Charli. I live in the U.S. I have been in the Tofersen (now Qalsody) Clinical Trial for 3 1/2 years. I have had no progression in symptoms since receiving Tofersen. It literally saved my life. I received the drug early in my diagnosis so have only slight impairments for which I am very grateful. The treatment (lumbar puncture) every 28 days is a small price to pay. When the Trial ends in another month I am hopeful that my insurance will pick up most of the cost, which would be cost prohibitive without insurance. I hope you receive the same benefits from Qalsody as I have.
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My physical therapist gave me a general rule of thumb…if I can’t recover from the physical activity within an hour then I need to change the level of difficulty or the length of time. I, like Dagmar, try to do a more activities within the day for a shorter period of time (20 minutes or so).
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I too have the SOD1 gene and have been taking Tofersen/Qualsody now for 2 1/2 years. The progression of my symptoms has virtually stopped. I am hoping, Amanda, that the same thing will be true for you. Of course every decision to take Qualsody is a personal one, but I agree with Amanda in response to Sandy that the Lumbar punctures have not been too bad. I have had over 30 of them and plan to continue as long as I continue to see the results I have experienced so far.
I also would love to hear more from Les Wood again about his comment that “after six years and nine months, I’m not so good”.
I am hoping that the science behind Tofersen/Qualsody will just be the start of understanding ALS for all pALS and not just those of us with the SOD1 gene.
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You are correct Phase III of the Biogen Tofersen Trial ended in July of this year. In April an extension of the Trial started for those patients who had already participated in the Trial, and wanted to participate, where everyone would now be getting Tofersen, even those previously receiving the placebo
In addition Biogen has now just started a new Clinical Trial for people with fast progressing SOD1 ALS who are not symptomatic.
Results have not been released yet.
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I highly recommend AFO’s. I use them when I want to walk more than just around the house…walk in neighborhood, grocery shopping etc. My legs get far less tired and I can walk faster. Like some others I find them a little clumsy around the house. I also had to get over my ego and have found fun socks and shoes to make me feel better about them. My orthotics person did a great job fitting them.
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Amanda
Thank you for sharing your family’s story. I too have the SOD1 gene and am in a Clinical Trial. Amazingly noone else in my very large extended family at this time is showing any symptoms. Some have debated being tested due to new research in presymptomatic trials. I would love to reach out to you to talk if you would be willing but am not sure how to do that.
Barb