Cindy

Keeping you in prayer. Cindy

Kathy brava for sharing your story. No matter the type of onset or the duration of the disease your feelings and emotions are normal and justified. May your journey bring you close to God.

Thanks FRANK. Sorry for your quick progression. I used to think slower was better. Now I’m not sure. I guess we each have our crosses to bear. Surely we’re doing our purgatory right here on earth.Take care. God speed. Cindy

I’ve just begun to get horrific bouts of pain. I’m into a 4 1/2 year diagnosis. It wakes me from a sound sleep during g the night. Muscle weakness is stressed early. Could use more info on pain.

Was on Edavarone from 11/17-3/21. I thought it was effective in slowing progression. I think I’ve outlived it’s effectiveness. Progressing more rapidly once diaphragm has been affected by disease.

I take breaks from reading all ThAts out there. When the cure is found all these world will know.

Chuck I’ll pray for you.today I saw a PAL I met at infusions 3 years ago. She’s further along than we are but keeps that smile going. I want to know her secret.

Getting vaccine PT 1 in 2 days. Life as I know it will not change. I’m dreading possible side effects.

Lots of anxiety and depression around me but never me. Until now. 5 years in a d I just want it over. I have a counselor and take anti anxiety meds. Never took more than a multi vitamin before ALS.

I was deemed to be a slow progresser. Lucky and hopeful for treatments and a possible cure kept me optimistic for 4 years even having lost use of my legs. In my 5 th year my arms hands and fingers are going as well as my diaphragm so breathing difficult. I want to hold out hope for treatments but I’m afraid nothing short of a miracle will help. I…[Read more]

I would volunteer for anything. Problem is I’ve been  symptomatic for over 4 years and diagnosed for more than 3 years and I’m 66 so I don’t qualify.

Well I for one found myself I low spirits after all the hype then disappointing results. It’s the same with Amylyx. Do we really have to wait for another trial?  And the Right to Try- where has this gotten us?

So as explained to me by a doctor in this study the placebo group performed better than expected. Placebo group did not decline as quickly as expected. Those on NurOwn did improve. So statistically unsuccessful but scientifically successful. Also biomarkers were identified in the spinal fluid. NurOwn not over yet. They are figuring out how to…[Read more]

Perhaps repositioning legs/ thighs by putting a pillow underneath them?  I have to reposition often. My power wheelchair can tilt and recline and I can move leg position as well. But those seats aren’t the most comfortable!  Comfort is a relative term now.

I’m so sorry Astrid. Not sure why every treatment is not available worldwide.

Hi Robert. I’ve been going to an infusion center for 3 years for Radicava. When I started in Nov 2017I was still driving and walking. I am now wheelchair bound. I too have an insurance issue. Going out is more taxing now.    But I welcome the outings. The nurses are great. I look at it as a social occasion.  I’m not sure you are aware but There…[Read more]