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Cindy

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@citaliano

I am frustrated. Where is The right to try for all? View
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    Cindy replied to the topic AMX0035 in the forum Research Topics 1 year, 9 months ago

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

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    Cindy replied to the topic ALS and driving in the forum Living With ALS 1 year, 9 months ago

    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]

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    Cindy replied to the topic There's got to be something for my soul somewhere.  in the forum Living With ALS 1 year, 9 months ago

    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]

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    Cindy replied to the topic COVID-19 Resurgence in the forum Coronavirus (COVID-19) and ALS 1 year, 9 months ago

    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.

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    Cindy replied to the topic Exciting Research in the forum ALS News 1 year, 9 months ago

    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.

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    Cindy posted an update 1 year, 9 months ago

    This latest information on NurOwn phase 3 trial is encouraging and I’m sure the entire ALS community eagerly awaits the findings but more do the availability of all PALS to have access to this and other treatments which are awaiting FDA approval. Time is the enemy here to so many of us.

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    Cindy replied to the topic Satisfied with your care? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 10 months ago

    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]

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    Cindy replied to the topic ALS and the 2020 Elections in the forum ALS Awareness and Advocacy 1 year, 10 months ago

    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. 😊

  • Profile picture of Dagmar Munn

    Dagmar Munn and Profile picture of CindyCindy are now friends 1 year, 10 months ago

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    Cindy replied to the topic Satisfied with your care? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 10 months ago

    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]

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    Cindy replied to the topic Dr. Appointments in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 1 year, 10 months ago

    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.

  • Profile picture of Cindy

    Cindy replied to the topic Are you getting a flu shot this year? in the forum Living With ALS 1 year, 11 months ago

    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.

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    Cindy replied to the topic Movies about Rare Diseases in the forum ALS In The Media 1 year, 11 months ago

    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.

  • Profile picture of Fernando Santana da Silva

    Fernando Santana da Silva and Profile picture of CindyCindy are now friends 1 year, 11 months ago

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    Cindy replied to the topic The pandemic continues in the forum Coronavirus (COVID-19) and ALS 2 years ago

    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.

  • Profile picture of Cindy

    Cindy posted a new activity comment 2 years ago

    What is the Gold Trial?

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    • Profile picture of Peter Powell
      Peter Powell replied 1 year, 12 months ago

      Hi Cindy, it’s the CNM Au8 trial that is being conducted world wide, now in Phase 2. It had promising results from Phase 1, and hoping for good results from this Phase. I have 3 months supply of daily liquid gold ( or placebo!) to take and they will undertake assessments throughout the trial to determine if it is working, or not.

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    Cindy replied to the topic Rilozole experience? in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 2 years ago

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

  • Profile picture of Cindy

    Cindy replied to the topic Information or results on Radicava (Edaravone) in the forum Research Topics 2 years ago

    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]

  • Profile picture of Cindy

    Cindy posted an update 2 years ago

    I have been taking Riluzole since my diagnosis 3 plus years ago. I take it one hour before my lunch around 11 am and then again at bedtime.

  • Profile picture of Cindy

    Cindy posted an update 2 years ago

    I just read Deborahs post about her neurologist taking a wait and see approach. If your insurance allows I would not wait to seek a second opinion. The sooner ALS is ruled out or confirmed as possible or probable the sooner you can avail yourself of treatments and therapies. Tough to navigate on your own.

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