[Marianne Opilla]

clinical trials.gov lists active research trials.

[Marianne Opilla]

In Non-Covid times, I attend a group yoga class twice weekly.  The instructor is now offering 1:1 sessions for same price.  Blessing in disquise for me.  I have been able to tell her about my ALS and limitations.  She has tailored sessions for me and offered meditative readings that are helpful.  She is a true professional and my angel!  And Dagmar, she is a rebounder! And is going to give a session with the rebounder to get me acclimated to that!!!

I have also looked at home workouts on Youtube and PrimeVideo to do at home since the gym is closed.

I feel progression happening in my legs and try to keep moving throughout the day.

[Marianne Opilla]

I had just completed my screening visit for the Oral Radicava Phase III trial. My follow up to start the medication on 3/30 was cancelled. Probably have to start the process over since it is part of a study and timing of visits is important. Very disappointed, but cannot be helped. Waiting to hear back.

 

[Marianne Opilla]

My daughter and son-in-law just ran the LA BIG 5k for ALS. Raised over $900 for that chapter. WooHoo

[Marianne Opilla]

Hello Lori,

That is interesting that your husband only has fasciculations/twitching and no other symptoms of ALS. I too have twitching from my head to feet and everywhere in between since a year ago.  But also lost most of the use of my right hand and developed speech issues prior to the twitching starting.  The twitching is stronger with exercise and being on my feet all day.  I use Magnesium 400 mg daily and just deal with it.

Have you researched Benign Fasciculation Syndrome?

[Marianne Opilla]

Statins.  My symptoms began with use  of statins and continued after I stopped taking them.  I think that was my “trigger”.

 

[Marianne Opilla]

I am entering Phase 3 oral Radicava trial later this month.  I will continue Riluzole.

[Marianne Opilla]

Many thanks to all who have contributed to this topic. I am LOVING it!  I am 64 and a prior runner. Always prided myself on my endurance on long races. My symptoms started about 1 1/2 years ago diagnosis Oct 2019. My right hand/arm  is atrophied and I  have bulbar involvement. Gradually stopped running because my legs wouldn’t “go”.  Always did weight training 2-3 X  weekly. I had to reduce my weights because my hand could not support the weights…dropped weights are frowned upon in most gyms. Recently my muscle cramps and twitching have increased significantly after weight training. Not sure what this means… an awakening or a protest riot??  Have reduced my yoga from power to gentle/meditative.  I grieve the loss of my usual exercise regimens, but cannot come to terms with exercise not be beneficial, so I adjust.  I am skiing in Switzerland next week. It will not be my usual black diamond all day skiing but some easy cruisers. And I thank each day I can use my legs.

We are all so active prior to diagnosis.  More research is needed on this.

Thank you Dagmar for  your reset movements. I plan to incorporate them.

 

[Marianne Opilla]

I was diagnosed in Sept 2019. The emotional trivial triggers + anger and despair  Cindi Zach mentioned are also very real for me.  I am tired of crying silently in the car or late at night so my husband doesn’t hear. Anything can make me cry and I am exhausted from it.

I had to retire early from my job as a teaching RN in infusion therapy because I cannot speak clearly and, with the loss of my right hand fine motor, I cannot teach.  My husband wanted me to tell close friends because we are a very social couple. Friends were wondering why we had “withdrawn” and I think my husband needs the support of friends. Social is sometimes hard for me now as I get very fatigued and it is  hard to eat socially since I cannot cut food and sometimes choke.  I find  it baffling how some friends handle this “news” by telling me of their various aches and pains or their relatives with MS or Parkinson’s. Others have been very caring and supportive.

I try to stay focused on the here and now, give thanks for what I can accomplish today and not think about the things I have lost. Since I have minimal lower motor function loss, I exercise a lot.  My doctor says I may be creating a “negative energy loss” but it makes me feel better mentally and physically. Twitching is worse when I exercise but magnesium helps.

Thank you for support and tips.