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    • #18689
      Dagmar Munn
      Keymaster

      Hello Everyone! Here is another member spotlight – – today Marianne Opilla shares with us her ALS story. We thank Marianne and everyone who has submitted their stories for our ALS awareness month project. These will continue to be featured every Monday in May. Be sure to look for announcements about additional member events that will also be happening this month.

      “Watching and Waiting” by Marianne Opilla

      I am Marianne Opilla, a 65-year-old wife, mother, grandmother, and retired RN. I was officially diagnosed with sporadic ALS in September 2019. Pre-ALS, I led a very active life. I ran races, hiked, and skied in the mountains of Colorado. I was a nurse educator lecturing all over the country and loved planning parties for family and friends.

      In late 2018, I started to experience severe muscle cramping, and I dropped things. By spring of 2019, my right hand atrophied, I noticed difficult speech patterns and strange muscle twitching. I was referred to a neurologist, and because of my medical and research background, I already knew the diagnosis before the appointment.

      ALS is a disease that relentlessly takes and takes. The mental and emotional toll is as devastating as the disease itself. To help gain acceptance of my “new life,” I turned to yoga and Reiki and learned to live in the moment. Instead of hiding my diagnosis, I asked my family and friends to become my support team. I use PALs forums to get invaluable tips and resources for self-help. Webinars and ALS organizations provide research information, but most are in the preliminary stages, and I am not sure if I will live to see the benefits of current research.

      Now, my function is very limited, and my life has been reduced to watching and waiting. Watching for symptoms to progress by weeks and months. Waiting for someone to give me time to speak, hoping for understanding. Watching the sunset from my window in total exhaustion from ALS fatigue. Waiting for the merciless FDA to approve therapies that could improve my life. Watching my family who stays close and loving, and most importantly, struggling to stay hopeful and positive for my future.

      #ALSAwarenessMonth #StrengthinCommunity

    • #18909
      Kathy stitz
      Participant

      Thank you Marianne for sharing your ALS story with us.  This is a devastating diagnosis and it’s hard to adjust to a new way of life and not being able to do things that you used to do.  The progress has been very slow in terms of finding effective treatments or a cure for ALS and this is very frustrating.   pALS don’t have a long time to wait for a cure.  A cure is needed now.  It’s hard to maintain hope but I guess all we can do is to try to cope as best as possible.  Best wishes to you.

       

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