• Posted by Michael on July 16, 2023 at 5:51 pm

    Hello, and as they say on talk radio, ‘first time caller here’.

    My diagnosis story is not that different from a lot of others I’ve seen posted. After a year of weakening legs, arms and hands, shortness of breath, lots of inconclusive tests, and a week at the Mayo Clinic in Scottsdale AZ, I found out last week I have respiratory/limb onset ALS.

    Right now, I’m not in terrible shape. I sometimes swerve while walking; would fail a heal toe balance test, stone sober (I imagine it would be kinda funny if I got pulled over for drunk driving and had to explain that to a cop); grumble that Sisyphus had it easy when climbing hills or worse stairs; hesitate before sitting in a chair worried I won’t be able to get up without assistance, and will never play Rachmaninov’s Second Piano Concerto at Carnegie Hall. Full discloser, I can’t play the piano but have always thought I’d like to.

    I’ve found getting a terminal diagnosis is quite a mule kick to the head, and I have to admit, it takes a lot to stay focused on the small things. I need to finish several projects I’ve committed to and promised to complete in the next few months – before I officially retire from my rewired retirement.

    As the saying goes, and immortalized in the musical Godspell, I’m taking this thing day by day. I do have a pretty strong faith in the big man/woman upstairs, which I’m certain will be comforting as the days, weeks, months and hopefully years come at us.

    I’ve started phasing in the 3 R’s regime today beginning with Riluzole, sent off a genetic test kit and am awaiting delivery of my mega B-12 injection kit. I’ve even got a daily pill box for the first time – #accessorizing.

    I’m on the far side of 60. My life has been an amazing journey filled with wonderful people, love and joy. However, I’m greedy, I want more of it, and will keep doing everything I can to keep going.

    Thanks for taking the time to read this. Cheers.

    Shane Spiegelman replied 12 months ago 1 Member · 1 Reply
  • 1 Reply
  • Shane Spiegelman

    Member
    July 18, 2023 at 3:26 pm

    Heya.

    Looks like not only your faith will get you through this. Your humor appears strong as your faith.

    I was diagnosed with respiratory ALS in September and I am experiencing a lot of what you have mentioned. I am a wee bit younger, but have no regrets in a very fulfilling life.

    Taking it day by day. There is an interesting side (s) to the process. Enjoy conversations with my peers.

    Best to you.

     

  • Gail Theile

    Member
    July 18, 2023 at 6:39 pm

    Hi Michael,

    I read your post and I was very impressed by your wit and positivity.  It’s good to hear that you’re mobile…I hope you have family around to help you.  May I ask, do you need help walking…..like with a cane or crutches?  I assume you don’t drive anymore….or maybe you do!  Have you joined any ZOOM groups with fellow ALS people?

    I’m sorry for all the questions.  I ALWAYS ask tons of questions, My brother, David, has ALS.  It took him at least a year, maybe more to be diagnosed.  It’s a blur because there were so many appointments and so many tests.  He’s had ALS for a little over 2 years.  He just turned 70.  He has been on Radiclava infusions from the start.  He has had good luck with the infusions.  He has 10 days on and 10 days off.  Radiclava has recently come out with either pills or powder….I can’t remember which, but he was enthused about it and looked forward to trying it.  Unfortunately, it has an extremely bitter taste….someone even described it as a combination of urine and vinegar!  He just couldn’t deal with it and had to continue with infusions.

    Again, I was so impressed by your attitude.  My brother has gone through several phases…..starting with shock and disbelief….then to numbness…..then to grief and sadness….then to dull acceptance….and I’m sure there will be other phases.  The infusions made him plateau and he was okay for awhile….now he feels like he’s taking a turn down.

    I have tried to get him to join ALS groups…..to talk to people in the same situation…..but he has chosen to be alone with my sister in law, who is his caretaker.  He needs to talk to someone but he is very stubborn.  He won’t even take anti-depressants.  I’m going to copy your post and send it to him…so that he can see how positive you are, in spite of your condition.  Thank you for your thoughts…I will add you to my daily prayer list.

    Gail

     

Log in to reply.