[Sandy]

Yes to contacting an Insurance Navigator. So sorry about the misdiagnosis. My husband became eligible for Medicare turning 65 Jan 2023. He did not yet have a diagnosis. We chose a supplement (Blue cross Blue Shield)and a prescription drug program. Everything was covered. Also the high co-pays were covered through another source that we applied for, but the Radicava Navigator should help with that, I can’t remember what it’s called but it was a $15,000 grant. After diagnosis in March, he went on Rilutek, then Radicava ORS, then Relyvrio. It’s true that the details of these drugs say that maybes of them will extend a person’s life by 3-4 months. So that’s a factor to consider. My husband had his first symptom in July 2022 and passed on Dec. 8, 2023.

[Sandy]

My husband, Paul, and I attended some Zoom groups together. I attended a Zoom Caregivers group. Both were once a month, which did not seem like enough. After Paul passed away, I attended the bereavement group on Zoom once a month. It wasn’t/isn’t enough time. Usually there are new attendees who are very much in need of support. I found a local grief support group that meets in person weekly and found that to meet my needs a little better, although it was not specific to ALS. The ALS Association seems to have a policy of only once a month meetings.

[Sandy]

What Mischa said. Hope you are successful in getting tested and any family members who want to be. My husband was tested at no cost through Biogen.

[Sandy]

Hello Nomad,

Everyone’s disease process is different. My husband, who had an aggressive form of ALS (18 months from first symptom til death) was advised not to do any strenuous work out. Possibly get an opinion from your neurologist. Some good feedback already here from others.

[Sandy]

We were told that since everyone’s progression is individual, it’s nearly impossible to tell if any of the meds help. My husband had an aggressive type. He passed away 18 months after his first symptom. He did the 3 R’s. It took 9 months for him to be diagnosed. We will never know if he had been able to start sooner, if it would’ve made a difference.

[Sandy]

My husband had an AVAP and was on Hospice. It was never an issue. He had Medicare and a supplement. It might be your insurance.

[Sandy]

My husband had his first symptom, leg weakness, in July 2022.  He was diagnosed March 3, 2023.  By then he was unable to walk and using a wheelchair.  He started Riluzole in April 2023, added Radicava about 2 weeks later and then Relyvrio.  He had no side effects from any of the meds.  At the end of May, genetic testing showed that he had SOD1, even though, to our knowledge, he is the first in the family to have ALS.  Because of the “hype” about QALsody, he decided to go off Relyvrio as (like everyone else)  he was unable to determine if it was helping.  Onward to QALsody.  Insurance approved it and we are waiting for the Neurology Dept to set up the procedure.  He is not well enough to travel to another location as he has lost the use of right arm, left is weaker everyday it seems.  He can talk and swallow, breathing is difficult.  I feel like everyone who has this disease should have the disease process and medications tracked.  I don’t know how else they will figure out if any medication really helps.

[Sandy]

Tofersen/Qalsody.  My husband is SOD1.  He cannot participate in clinical trials because of recurrence of prostate cancer.

[Sandy]

My husband started Rilutek in April, added Radicava and then Relyvrio.  He is in the process now of trying to qualify for Qalsody.  His Medicare D has covered most of the hideous expense.  We qualified for a Healthwell grant for the co-pays.  After studying results, he decided to stop taking Relyvrio.

The doctors office did all the processing, Paul just signed papers.

 

 

[Sandy]

Other than this thread, is there a Zoom support group for SOD1 pALS and caregivers?  My husband is positive for SOD1.  He is the only person in his family as far as we know.  His sons are reluctant to get tested.  We all need more information.

[Sandy]

Please start a blog!  My husband is SOD1 and debating about taking Qalsody.

 

[Sandy]

My husband was 64. We never felt that his age had anything to do with diagnostics and care.

[Sandy]

https://www.als.org/support/states/arkansas

als.org

Arkansas | The ALS Association

Arkansas | The ALS Association

[Sandy]

Hi Allen,

Definitely call your neurologist and report your symptoms. Contact the ALS Association in your area or the Steve Gleason fund for help with supplies that you might need. Avoid a fall for sure. My husband got a Jazzy Carbon wheelchair loaned to him from the ALS association and it gave him so much better quality of life. Disease progression is different for everyone. For my husband, it was 18 months from first symtom to taking his last breath. Is there any place in your area where they do ALS Clinic? That is where you have one appointment once every 3 months and all the different disciplines come to you instead of you going to a million appointments. Ugly cry all you want. In the meantime try to get all the help and support that you need.

[Sandy]

My husband heard from the doctor today, she wanted to know if he still wants to try QAlsody. She was not very encouraging, saying there is no actual evidence that it is a benefit and that more studies are needed. My husband said yes, he still wants to try it. She is talking about starting the loading doses on Sept 21. She will let us know on Friday after some other things on her schedule come together.

[Sandy]

Henry, it depends on your insurance and if you qualify for a subsidy.  My husband has Medicare D prescription insurance.  He also qualified for the Healthwell grant of $15,000 to cover the co-pays ($600-$1000 per month) for Radicava and Relyvrio.  Rilutek is a $4 co-pay.

[Sandy]

Regarding which treatment is working, as far as I can tell there is no way to know because each persons progression is different.  That’s why every person who is taking any or all should be tracked.

[Sandy]

Hi Amanda,

I am having the worst time navigating the discussion thread.  I see your posts and share them with my husband.  Thanks !!!  Sandy

[Sandy]

Amanda,

He doesn’t like the idea of the spinal injection.  Does want to try it though and is in process of getting insurance override and approval.

Sandy