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    • #18921
      Amanda
      Keymaster

      ALS, those terrible three little letters! What did you feel when you first heard them in reference to your diagnoses?

      Many times when a person gets a diagnosis of something there is a sense of relief just because now they can understand and “fix” what ails them. This is not the case when you are diagnosed with ALS a disease with no cure. It is impossible to always feel positive when you have a disease like ALS. That is unrealistic in my opinion.  I think it is only natural to grieve when you have ALS.  Grief is not just an emotion we experience when someone we know or loves die. You can grieve the loss of your health, the loss of your dreams, your future, what you thought would be. You can even grieve the loss of someone you didn’t know (I had to explain that one to a parent one day at work.  Their child was crying because they never knew their grandfather and it was grandparents day at school.)  Grief is strong, scary, wrenching, and countless other adjectives.

      So let’s be realistic about being a pALS. We definitely focus on Living Well with ALS and trying to maintain a positive attitude as much as possible.

      Grieving is not a linear path. You can move in and out of different stages daily, or even from hour to hour. Where are you at right now? Do you have tips on managing grief? What do you think?

      ALS and Loss - I AM ALSFrom the I AM ALS website.

    • #18947
      Richard
      Participant

      The 6 stages of loss really hit home. After a year of weakness in my left arm thought to be from a prior rotator cuff injury, surgery in October 2020 did not bring strength back and I was sent for an EMG/NCV of my left shoulder and nerves. During the exam prior to the testing, the doctor notices weakness in my right arm and both hips. I had 2 days of difficult  testing of both arms, both legs, neck and lower back and the testing revealed severe “abnormal waveforms” as a strong indication of Motor Neuron Disease with ALS the most common. As a lifetime endurance athlete, I have raced in over 10 inline skating marathons (26.2 miles) in Napa Valley, Chicago and Houston since 2010 and have won many medals in my age group. I am now 66 and the reality of never skating again has been extremely emotional. As recently as Oct 2020 prior to the shoulder surgery, I was skating 12-15 miles 3-4 times a week and felt great. When I decided to put on my skates last week to see if I still had the ability to skate a little, my legs and ankles felt wobbly and there was no way I could head to the park to skate in this condition. I am under the care of an excellent Neuromuscular Disease doctor at Columbia/NY Presbyterian Hospital  in NYC, have been prescribed Riluzole, Tudca along with vitamin supplements. I do my best to walk each day and do light physical therapy at home so I am passing the denial stage and feeling shattered at the loss of my “normal athletic life functions and future expectations”  as I enter into my retirement stage in 2021. Rich

      • #18961
        Marianne Opilla
        Participant

        Richard I feel your loss of the skating. You will treasure those memories.  For me it was skiing.  I would put my ski boots on from time to time and wonder if I could ski one more run.  My last ski was epic in March 2020. I went to Switzerland and skied at the base of the Matterhorn.  I re create that in my mind often.  I grieved giving up my Subaru Outback with the ski racks.  Anyway, I guess I have moved into the acceptance phase for now.  At times drifting back into the depression.   I haven’t been able to find any meaning to this horrible fate.

        Take care and look at those medals and remember…

    • #18963
      Kathy stitz
      Participant

      I have been feeling very depressed and sometimes angry about having this horrible condition.   Sometimes people tell me they are thinking of me or praying for me and I really appreciate them saying that but those of us who have ALS are not going to get better, only worse.  That’s just the reality of this diagnosis and it’s very hard to accept and deal with and it can often become overwhelming.  I really wish I had a cure for this for all of us who are suffering every day.

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