• Gary Gehiere posted an update 3 years, 5 months ago

    Time for an update: ALS continues its progression around voluntary muscle weakness. Whether the rate has slowed or not is difficult to know. There is a self-test available online, called the ALS FRS (ALS Functional Rating Scale). This test is a simple but valuable subjective measure of the ability to function. I was diagnosed in Apr/18 with bulbar onset ALS. I started on Riluzole immediately and Radicava (edaravone) IV treament In July. My ALS Functional Rating) scale at the end of 6 months following diagnosis, was 32/48. At the end of 12 months, my ALSFR was 26/48. So the decline was 16 points in the first 6 months and 6 points in the second six month period. Objectively. my score shows a slowing of the rate of progression and does bring a measure of comfort in the face of what seems to be a losing battle around physical function. I will do the test at the end of June and report to this forum. Again, my personal opinion – find and foster a faith foundation, stay positive, value every new day, live up to your privileges, and cherish your family and caregivers. Gary

    • Gary – – this is good that you are tracking your ALSFRS-R… although, I’m sorry to see your numbers dropping!
      Besides Riluzole and Radicava as medications, are you incorporating any lifestyle changes to help support slowing progression? For example: daily exercise, nutrition, stress reduction… and the like. There are lots of tips under the forum Living with ALS: ” Exercise and ALS” you also may find the discussion interesting under “Functional Rating Scale…” Thank you for sharing your update! Do you have any questions or topics that we can have members chime in on and answer for you?

      • Thank you for reinforcing the value of supportive therapies and where to find some resources. I couldn’t wait until the end of June to take the ALSFRS – R test – so just did it now. Still at 26/48 so effectively, no measurable change in the last three months.
        Subjects for discussion: I am always interested in ‘coping tips’. In other words, what works for you as we all face new challenges around daily living. Examples might be around developing a satisfying daily routine, communicating when words fail, accessibility aids (or the lack of), navigating in public spaces, what to say when people ask ‘How are you?’, how to have a conversation, how much exercise is the right amount, keeping up hobbies and finding new ones, caregiver well-being, benefits of keeping a journal, how to stay positive when you feel otherwise, staying engaged with your world or the larger world, what have you learned so far in your journey with ALS
        I assume people will respond based on their own experience which can sometimes feel like a vulnerable exercise, so I suggest we participate simply to help others. Comments welcome!

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