What Are The Odds?

 

Beth and Mike on Wedding Day and at San Siego Wild Animal Park
The woman in the picture at the top of the blog was my wife, Beth. Like me, she was in apparently perfect health until she started losing strength a few years back. Defying any reasonable odds, she was diagnosed with myotonic muscular dystrophy, another rare disease that slowly saps one’s strength. She died of respiratory failure in October 2012.

When Beth and I were married, we seemed to be in perfect health. We would go for long bike rides and take camping trips to the California woods and mountains. We had two beautiful daughters and fortunately were able to keep up with them during their growing years.

My diagnosis came in 1996 when I was found to have inclusion body myositis. This is an extremely rare illness with only a few thousand cases in the entire United States. It is slowly but relentlessly progressive, eventually leading to total disability.

Her diagnosis of myotonic muscular dystrophy came in 2006.  The odds of the two of us contracting these rare diseases is in the billions to one. In other words we could have won the lottery many times over before such a thing would happen.  (No such luck!)

  8 Responses to “What Are The Odds?”

  1. Awesome! I’m going to wait for your first entry on the BTW part before sharing the link. I think your tips, etc. will really hook those people who are also disabled so I wanted to wait…I know you – that will be up in a week or two so I’ll send it out then!

    Love you!

  2. Amazing I’m hooked, can’t wait for Act II.

  3. I knew you two were perfect for each other! And its really cool to see that special twinkle is still in the eyes of both of you.

  4. Oh my! I usually say that I won the rare disease lottery, but you won twice! I am sorry. Thank you BOTH for sharing! At the last visit my doctor was entertaining the thought that I do not have probable sIBM, but that I might have MMD! (Onset and muscle/strength symptoms are consistent with IBM, although unusual for a relatively young woman. However MMD seems to fit the plethora of other unexplainable symptoms that have been labeled anomalies. Original dx was PM). I don’t know much about MMD, having done only a minimal amount of online research, and have not undergone any further tests, knowing that there is not much to be done. I will make sure that my biopsy and EMG are reviewed again with dx in mind, and that because of the anesthesia problem I would let surgeons know about this possibility before any surgeries or procedures. Would you be willing to share some advice as to what to do next? You may email me at address above (typing and computer work difficult now, maybe you would be up for a phone call sometime?)

  5. WOW. THANKS FOR LOTS OF INFORMATION AND IMAGES.

  6. I just discovered your website today. I enjoyed reading your article in “The Outlook”, Fall 2012 edition. I also suffer from IBM. I am 66 years old and I too lost my companion and best friend on Oct 14th, 2012. I am now living alone in a three story house (with two stair lifts) and wonder how long it will be before I will be unable to get vertical. At that point I will be forced to move to a single story abode. I currently only use a power chair outside the home to get around my local neighborhood. I am looking forward to reading your journal. If you are so inclined, please share your email address.

  7. Mike-

    What an inspiring and sad story. Would you ever consider allowing a guest blogger on your blog?

  8. Mike-

    I was just cruising around your site and noticed you don’t have a post on “Facebook” not any of the other social media. Should be another method to put your site out there. Let me know if you need help putting it on your site.

    John

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