I began taking SPG302 yesterday, Mon 4/27/26. I’ve only had two daily doses so far, but no side effects noticed. I will update my experiences periodically.

Hi

I wounder how you are doing whit Darifenicin drug for ALs.

Have you seen any benefits or any sideeefcts ?

Thansk

I live in SW Florida, and my sister and best friend live in Maryland. They both are coming to visit me in June. I’m so excited. This year has brought a lot of changes and stress. I am going out on disability in June and this gives me something to look forward to which lifts my spirits. We will be spending several days in Bradenton and going…

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Mine is a Drive brand, model “Nitro.” I’ve been using it for 15-years… sturdy, lightweight, and has big wheels (for better balance)

AuntyB, …. wow! A 12-hour flight! Your tips and suggestions will be helpful for our members. And you are so right — hotel/motel interpretation of “accessible rooms” varies widely.

I have been living with ALS for the past 7 years and I travel back and forth between Orlando Florida and Lagos Nigeria at least twice a year. Obviously this is by air and it is a 12 hour flight in each direction. My best advice is to let the airline know in advance what you require especially if you have zero mobility so that they can prepare…

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A rollator is just a walker with wheels. They often also have hand brakes and a seat.

What’s a rollator?

I have traveled by plane and the airline was very accommodating. I had a wheelchair and a walker.

Summer is around the corner, and I am excited. I plan on making the most of this season. This will likely include some travel and excursions. 

What tips and tricks can you share with pALS who want to travel by air, road trips, or cruising? Do you travel with a wheelchair? 

Have you found any resorts or places that are especially… Read more

May is only a few weeks away! What kinds of awareness activities are our members planning to participate in?

Transitioning to using a rollator is an emotional challenge for us all. But for safety’s sake, please use it before your next fall is more serious. I’ve been using a rollator for 15 yrs. now, and it has been so important to keeping my independence. It’s also equally important to keep up your therapeutic exercises — to maintain strength in…

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Thank you Johnny5. I did register with Healthwell. I have been combing the internet for years trying to keep up with foundations and other organizations that help pALS. I think listing them on the forums from time to time is helpful too.

Amanda

Thank you Timmy! This is great information.

Hi Amanda,

When I applied for social security, it seemed to be taking a while to get approval but then someone from the ALS Association advised me to make sure the social security administrator knew my application was a TERI acct. I did and I was approved within a week.

I believe the social security status will expedite your…

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Is anyone on Medicare Advantage and receiving Qalsody? Do you have an out of pocket cost each month? I have been receiving Qalsody since I was diagnosed in October 2022, initially as part of the early access program with Biogen. I currently have regular Medicare and a Medigap through Univera (BC/BS) Qalsody is covered through Medicare Part B.…

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Hi Amanda,

I have Medicare and a Humana Medicare advantage policy with $0 monthly premium. It is paying for the Tofersen treatments. I didn’t need any other Medicare supplemental policies.

You are SO right Johnny5! The information is out there, the help is out there — just don’t give up looking. We have to be our own advocate … we PALS can always provide support and encouragement, and valuable tips like yours.

ALS News today has an article on getting help for pALS. Financial assistance at Hopewell can help big time with medications, and there are others that will help in many different ways. You just have to spend time and be persistent because they get busy. I AM ALS is also a good place to get direction; they assign a counselor for pALS and help…

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I have Medicare Part A and B. I do not need Part D because the VA pays for medications 100%. I only have Medicare for 2nd opinions now. I chose the Advantage program because it offers a refund for Part B. Last year I got $76 back, this year i get $185 (humana). The total cost for Medicare is less than $20/month. My wife is also a 100%…

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I have the VA paying for everything. I got 2 electric scooters now, the new one is 35 pounds w/o battery. Battery is 5. Been on Radicava forever, at first via port, now just the oral version. All free. They built a greenhouse for me so I can keep engaged in something. Will do my inside of the house in 30-90 days, mostly the bathroom and kitchen.…

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No, I do not use Qualsody. No SOD1 gene when they tested me.

I found it was easy — took a copy of my medical file containing my diagnosis to the SS office. I was approved on that day.

It’s Tax Day!!  

It is expensive to live with ALS. Many pALS have to move into an accessible home or make modifications to their home. There are many other expenses that we may not be prepared to address. Fortunately, many states allow tax breaks for people with disabilities. 

What tax breaks do you find the most beneficial?  How did you… Read more

I was encouraged to get Medicare Part A, B, D and a supplemental policy or “gap” insurance. This is getting expensive. What are your thoughts?

Johnny5,

I use to come home every day and need a nap – sometimes a two-hour nap! That seems to come and go these days, but I have been working full-time. You’re not alone! I think being exhausted is just part of life with ALS.

Have you reached out to the company?

LandG,

It sounds like the two of you are a devoted couple that works great together! You shared some awesome tips. Thank you.

Amanda

Thank you! I’m glad it was an easy process.

Hi, Amanda,

I applied for SSDI little over 2 weeks ago and got approved within a week including Medicare . It was quick because ALS. Since I am on state leave of absence benefit for 2 months, social security office able to pull additional info they needed so i didn’t need to go to local SS office. I am also on Qalsody patient and found…

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I really want to participate in this experiment, but I’m in China and don’t know what to do. Have any friends who have used it before? Could you transfer it to me? Thank you very much.

Hello Hondo, I’m just checking in to see how you are doing. Are you still experiencing your wife’s stressful comments? Have you found a family member or ALS professional to talk to about it?

Sending good thoughts your way… Dagmar

I was notified on Friday, 4/10/26 that I’ve been approved for treatment. Chow stated that the next step would be an outreach from Spinogenix via telemedicine to go over specifics of using SPG302. After that step, a blister pack of 30 days of medication will be shipped to my home. It’s a 53 week study with periodic monitoring throughout the…

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Hi Rando,

Thanks for your update and wish you all the best.

Hoping for better results since this is a disease modifying drug but till now I have not heard any uplifting reviews. Spinogenix is a really promising company and they brag about SPG302 so much haha so waiting for that outcome. It may have worked for Alzheimers or Schizophrenia but not…

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Exhaustion. The energy is not there. A 15-minute nap helps. O2 Sat is a topic. My smart watch says 82 a lot more often.

Although it appears that I am not fALS, I do have the SOD1 gene mutation.

When I was diagnosed in 2018, they did not do genetic testing if there wasn’t a family history. Luckily Synapticure offered free genetic testing and I decided to do it. As soon as the mutation was discovered, I immediately started Qalsody (or should I say Tofersen). I…

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I was able to see Dr. Jenkins and her assistant Chow on Monday, 4/6/26. It was an uplifting and encouraging visit. Both of these individuals are wonderfully compassionate and share their knowledge and support freely. I was given a full examination, then we moved into intake for the SPG302 EAP. Barring any anomalies in my blood work or ECG, I…

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Hi Randi, I just saw Dr Jenkins yesterday. I really like her. The communication is great. I feel like they connect more with the individual there. Chow has also been great facilitating things for me. Technically I live in California but I spend at least half my time in Mexico. They help me work with that while being in their program. I did…

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