[Susan]

I have ALS, 2 years now, but many signs and falls later, I was diagnosed in December 2021, but actually sick with it nearly all of 2021.
My husband is my caregiver, he has to watch me decline a bit every week and he usually cries along with me. We got a loaner lift from out ALS loaner closet, also a power chair. The one and only time we tried the lift an RN was here to help my Husband rig the commode sling, then he started to Jack me up and I nearly slipped out! We had the ALS team to pick it up! So, it did not work for me, but it is used every day with success. So just try it out, you won’t know if you don’t try! Good luck and may God bless you🙏

[Susan]

Hi, diagnosed in December 2021. Started Radicava mid April 2022 via iv, then when they came out with the oral solution I switched, still,progressed quickly, several broken bones from falling, then in January 2023 started Relyvrio, very nasty taste, dealt with using Listerine strips on the tongue. It’s been 10 weeks and I am still progressing, added Riluzole also in January 2023. No side effects from any of the 3 medications I am on, but still declining!

[Susan]

Well als is depressing enough, right? But add to that seasonal depression and things can seem very bleak! I was diagnosed last holiday season, depressing! What I am trying this season, because I live in a climate with snowy days and gray skies, and cold! I went on Amazon and found a light therapy pole light that simulates sunshine, no burning rays or heat, just the brightness of a beautiful spring day! Very helpful already, highly recommended for anyone that gets tired of endless gray days! GOD BLESS ????

[Susan]

I got the 4th booster, all Pfizer, no reaction to any of the vaccinations, not even a sore arm, people are under the impression that the virus is (just the flu now) and that is not true, the virus is still alive, and can be debilitating to some who get sick, others, like me will be symptom free. My own Daughter refuses to believe there even is a virus ????.

mask up people, it’s starting to raise its ugly head again, it with morph into a new strain and cause shut downs again, I truly believe this!

[Susan]

I have been sick for 2 years, diagnosed last Christmas, what a shock to say the least, very healthy happy 64 year old female, 9 siblings, ancestry back 5 generations, no ALS anywhere but me. At first it didn’t sink in really, of course we cried, but had no idea what my neuromuscular   .specialist had just told us.
‘I was already using a Walker, had been for about 3 months because I kept falling due to ALS and breaking bones, I had been dealing with foot drop, causing me to fall a lot.

we did our best to educate ourselves, very scary, and then seek treatment options, tried the 1st riluzole, bad reaction, then got approved for Radicava via I V, then went on oral solution when it came up. I don’t think the Radicava is working on me, I have progressed quick, so now I will go on the new one just approved by the FDA.
‘last Doctor visit filed a POLST, ask your Doctor, I chose no life saving measures, just keep me comfortable, the reason is my fear of being trapped on a ventilator, I have a very strong Catholic upbringing and have all confidence that I will go to heaven.

 

[Susan]

I was a gym regular, toned and strong, then ALS came along. Now I do physical therapy to keep what strength I still have, very little. In a wheelchair no for 4 months or so, but I do the PT to keep my upper body strength, and I always feel tired and happy after I work out 💪

[Susan]

Absolutely, I got the 15k grand, but I have no co,pay on any of the 3 main ALS medications,
Radicava ORS, RELYVRIO and Riluzole. I have Aetna Medicare and they are great ???? non of the medications are slowing my progression, diagnosed with ALS in December 2021. I have lost all function except arms head and neck, right arm and hand are starting to decline!

[Susan]

So sorry you are not able to take it. I pray for you a miracle  healing, and I pray for myself too..

[Susan]

Hi, I am Susan, I have been on Radicava for 8 months, I started RELYVRIO Dec 31/2022. So just a few days ago, happy to report zero side effects, it is extremely bitter tasting, but it’s only 8 oz, my wonderful husband puts it in a large glass, so it seems like less, I chug it down, don’t hold your nose, it makes it worse! Then my wonderful husband puts a squirt of honey on my tongue, I hold that and then have 2 cups of coffee, done! I have a very strong Faith, thanks be to God, I am given the opportunity to have this medication! My heart and love to all who are affected by this horrible disease!

[Susan]

Great! Smart! I too have had 4 vaccinations and my flu shot, no adverse reactions and since I have ALS I feel a bit safer this winter from Covid and the flu, my Faith keeps me strong too! GOD BLESS ????

[Susan]

I wish my partner, John,  of 11 years could have a break! I have lost the use of my legs, I fall a lot, most recent, broken sternum. I am in a wheelchair but fell during a kitchen sink mis hap. He is 24/7 on duty, doesn’t sleep well, or eat, he’s too busy caring for me. I have a large family, no help! My older Sister lives directly across the street but she claims that she can’t help because she can’t watch me die…

we are trying to move back to Oregon from California, our home state, because we have Family and friends that would help, there is just a housing shortage, nothing to purchase! So we are in a sad way, John gets easily frustrated with me, he says he doesn’t mean to be that way, he is just exhausted. Please pray for us that we can move soon, thank you everyone 🙏