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.… 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… 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… Read more

All of this is exciting and hopeful. But will it be in time to help us?  That is the question.

like Dagmar, my first symptoms were in my right foot and leg. 10/16. I continued to drive until lifting my leg from gas pedal to brake started to become a problem. 4/18. We could have adapted the car but I was reluctant. I miss driving. But then again I miss walking. Just grateful for our wheelchair van. I can still go places with my husband.… Read more

This old piece of advice repeats in my mind:  offer it up. I cannot physically engage but I can mentally help others through the spiritual realm. I do a lot of praying. Trying to pray more for others than for myself although I always am begging for new treatments and a cure, in time for me and for you. Every PAL is on my daily prayer list.… Read more

Although we are so over Covid it is not done with us. That said I believe this too shall pass. As in the 1918 Spanish flu, these pandemic viruses take time to run their course.

Yes I try to keep up on the research. I’m especially interested in those treatments and drugs which have completed the trials and need final results and then on to the FDA.
Time is not on the side of PALS. If treatments for Covid have been expedited why not Centaur?  Why not NurOwn? And a few others. As in all things the waiting is the hardest part.

Jerry I can only hope you will explore more options. I actually came upon my new neurologist/clinic through an inquiry by my sister whose daughter was seeing a neurologist for a different issue. They live in a neighboring state. That neurologist merely suggested that I should make an appointment with my current doctor. I did that and within a… Read more

I’ve always been a political junkie and have kept up with candidates and issues over the years. Now that I’m more confined I have even more time to stay informed. 😊

I was with a team from early symptoms through diagnosis and the about 15 more months. In general they took the passive approach and only addressed things I brought up. Not patient pro-active is an understatement. I switched clinics and am pretty satisfied with my care. Still I need to be pro active but the team is better at… Read more

My husband John is my caregiver and he goes in with me to every appointment. I do see my mental health professional privately.
two sets of eyes and ears are better than one and it helps when we discuss topics post appointment.

I am always encouraged to get the flu shot but I seldom do. Prior to my diagnosis I always got the age appropriate health screenings ( mammogram/ colonoscopy, bone density) but I’ve always been reluctant to get vaccines.  I really am on the fence this year.

There is a great movie on Netflix called “ The Fundamentals of Caring”. Stars Paul Rudd.
who is a caregiver For a teen with Duchenne Muscular Dystrophy.

I’m in The Philadelphia area.  Clinic visits are virtual. However I’ve been told that they are working feverishly to open a new clinic space. I’d much rather be seen in person.
I go to an infusion center for Radicava and feel perfectly safe. I’m sure every precaution will be taken at clinic.

So I take my Riluzole about an hour before lunch and at bedtime. No side effects.

I was diagnosed in Aug 2017. Symptoms began Oct 2016. I started Radicava in Nov 2017. I am still on it. I believe it has kept my progression slow. I have a port and go to infusion center. I think the outing also helps. Seeing the nurses and seeing other patients helps put everything in perspective. I recommend trying it. As one neurologist told… Read more

I am seen by the Temple clinic team in Philadelphia. Right now appointments are by telemedicine. It definitely takes longer to get an appointment. Temple is an approved site for the platform trial out of Massachusetts and the trial of Centaur. Neither trial has been launched at Temple due to Covid, although all the preliminary contracts… Read more

Igor, I am reading your remarks. Please keep posting. Thanks for sharing your knowledge and insight. Cindy

I was about to have outpatient PT when Covid struck and all was postponed. The PT center is opening up again with restrictions and protocols. However, I am not ready to take any chances quite yet. And so I will wait.

When I was diagnosed I told my family that Lou Gehrig and I have more in common than our love of baseball. I tried to keep it as light as I could. I’m 3 1/2 years in since symptoms began. Limb onset. Feet and legs. Slow progression. Just beginning in fingers and hands. We moved into a 55 plus community. We did tell our neighbors and knew who to… Read more