Cindy

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. I…[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. May…[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 week…[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 responding,…[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 me…[Read more]