About

 

I have had a rare, progressive, untreatable, disabling muscle disease (Inclusion Body Myositis) since 1985.  During that time I have accumulated a wealth of tools, ideas and coping mechanisms to allow me to continue to enjoy life and remain independent.  In this blog I will share my experiences in the hope someone else might benefit. Please keep in mind that no two people are the same, and that what works for me might be useless, or even counterproductive for you or someone you care for. I am not a medical professional (nor have I played one on TV), so please judge the content of this blog site accordingly.

  23 Responses to “About”

  1. Hi Mike and Beth,

    I love your picture on the blog. It shows the commitment and devotion you have for each other. What an inspiration. You really do make lemonade out of lemons. Your blog is not only an inspiration for the disabled, but for everyone.

    Fondly,

    Carol Wallace

  2. Hi Mike,

    I’m so impressed with the quality and content of your website. The information, in each catagory, can help anyone that has a challenging disability. Besides being disagnosed with PM and most recently Limb-girdle MD, I am the co-founder of Ballroom & Latin Wheelchair Dancing. In just 2 1/2 years we have watched dancing change the lifes of those “dancing on their wheels,” as well as dance volunteers who partner with each wheelchair user. With the funding from two Foundations, we will be offering on-going, FREE wheelchair dance lessons Ballroom wheelchair dance lessons in 2011. Starting on Jan 18th, 1:00 to 2:00 PM., Gymnasium, Salvation Corp Kroc Center, 6753 University Ave, is the first dance series this year. Our mission is the share the joy of dancing with many more disabled in our community. Call 858-573-1571 for more information or to register. Beverly

    • Hi there, im so likely and happy i invent your site. I reading despoil of blog, but only not quite receive so fairly good content. Your article is so crushing, i wishes state your blog in my rss. Can’t delay owing some unheard of article. Hope something supplemental deeaominttirn be acute public.

    • That’s a quick-witted answer to a difficult question

    • Thanks for the several tips discussed on this blog. I have observed that many insurance firms offer clients generous discounts if they choose to insure many cars with them. A significant quantity of households have got several vehicles these days, particularly people with more aged teenage children still residing at home, as well as savings for policies may soon increase. So it pays to look for a great deal.

  3. You have a lot of information here to offer to others who are disabled. I don’t now HTML so I am going to add your link to my site, which is for the disabled as well. I am constantly looking for information to provide from other sites, or for articles that I write.
    Linda

  4. Thank you so much for this website!! The wealth of information is amazing!

  5. I was diagnosed IBM in 1999 and had many of your same problems. Six yrs. later, I found I really had heavy metal poisoning, which acts the same as IBM. I was off the scale for toxicity. Where 10 was the maximum allowed for body tolerance, I was 140. I am a recovering quadripledgic as I go thru chelation therapy for the third time. This last time is for lead, which exceeded the limits by 3 1/2 times. Heavy metal toxicity is accumilative over a lifetime and symptoms only appear later in life like IBM. I am now 70 yrs. and slowly getting my muscles and nerves to recover. Could you be toxic? A hair or urine test will answer that question, not a blood test. Take care! JEAN

  6. Hello, just a quick note to let you know that I’ve enjoyed browsing your blog. Thank you for giving me an inside view of your life and the tools you’ve developed to make life a bit easier. I’v stumbled across your blog while googling for ‘cooking for disabled beginners’. Keep up the good work and keep inspiring all of us, no matter if disabled or not. We can only learn from each other! Karen (German, but living in Wales)

  7. So, i’m going to come right out (hehe) and say that I am a 27 year old lesbian who lost her right arm in a terrible car accident years ago. I just recently started making youtube videos in the hopes that I could help others who are lgbtq and disabled. Or just one of the two. I’ve known that it would be hard to get my message of hope out there to others.

    It’s actually quite depressing knowing that so very many people are struggling with what they are going through and my not being able to help them. I am a psych major as well, so reaching out has always been something I’ve been passionate about. I would really love to be a part of your blog site as a vlogging contributor in order to touch the lives of readers that you may not currently have. I believe that i could truly be an asset to this blog’s community.

    As of yet, I know of not a single disabled lgbtq YouTuber. This should really change. We, in the gay community, fight for a voice. We have gotten that voice on YouTube. But what about the disabled lgbtq’s? We have no voice yet. I would love to change this. I’m simply asking for your help in getting my (and our) voice out there. Please think on this and message me back. You have no idea how much my heart wants to do this, it is so important to me to give recognition to others like me. Please give me a chance to prove that I can be an asset in this disabled community.

    • I found your site from wikipedia and read a few of your other blog poheT.ssty are cool. Pls coinunte this great work. Later on other fantastic American rock acts such as Lynrd Skynrd, The Eagles, America, the Allman Brothers, and the Doobie Brothers would come on the scene and shake up the world with their string of hit songs.

  8. I too have IBM dxd 2000 and I live in South Africa. I have recently started a blog where I want to showcase assistive devices for the disabled. I also belong to an IBM facebook group that may interest you

  9. I was wondering if you knew the contact number your MDA clinic contacted for you to see if you would qualify for the Novartis Breakthrough Study? Thank you so much.

  10. I see you tried the Jaeco arm support. i have the same problems you do with my right arm, do you still use it, and would you recommend it? i was dx with IBM in 2001, but i’m sure i had it for many years earlier.

    • I can no longer use the arm support. My arm is so weak that I can’t push against the rubber bands enough to reach the plate. I am quite limited in the kinds of food I can eat, mainly due to the problem of getting it to my mouth. It takes at least an hour to consume each meal.

      • PlatinumArchie / As I posted on Twitter the day we were treated to this snippet, one of my fav songs from the album, ~David, LOVE this *Rainbow* ray of sunshine on this gloomy day in SoCal! The room lit up & so did my heart~ so grateful! ♥

      • Benar sekali mas banyak yang masih mengatakan bisnis online bisnis yang abu-abu, hanya bisnis impian namun mas sudah membuktikannya itu salah, sama seperti saya yang sekarang sudah merasakan pendapatan rata-rata 500 ribu perminggu dari bisnis online yang saya geluti jadi total dalam 1 bulan saya bisa mendapatkan 1 juta sampai 1,5 juta dengan waktu kerja hanya 1 jam sehari..wow..mantapkan..bisnis online salah satu solusi buat menambah penghasilan kita.

  11. I have Myositis. I have problems with my legs and arms and muscles chewing and swallowing. I have AntiSynthetase Syndrome, JO1 antibodies, Pulmonary Fibrosis, Pulmonary Hypertension, Type 1 Diabetes for 42 years, Rheumatoid Arthritis and Osteo arthritis, Reynaud’s and Scleroderma. Pretty much my immune system hates me lol. Glad I found your site!!!! Take Care!!!

    • pls send me contacts. I have IBM.
      I have slow leg and arm muscels and swallowing problems. I have been diagnosed with IBM. any inf.
      Jasbir

  12. My sister crystal Cacoperdo has spastic cerebral palsy, her condition is physical despite the limited use she has of her body she’s very smart. and growing up with her I know how frustrating it is for her to just get through the day from morning to night she needs constant care. I have invented something that that I believe will make her life and the lives of many others a little easier. A self closing magnetic zipper. https://www.kickstarter.com/projects/1049761729/magnetic-zipper-patent-pending-say-goodbye-to-zipp?ref=category_location Just being able to open and close her jacket or back pack without a struggle by herself would be huge for anyone afflicted with low finger dexterity or amputees. But I’m struggling to get the funding I need. If there are any blogs you know of that might help share this to reach a broader audience so this product may be realized. I do believe it will make allot of lives easier. Make a difference

  13. I must say it was hard to find your blog in search results.

    You write awesome posts but you should rank your page higher in search engines.

    If you don’t know how to do it search on youtube: how to rank a
    website Marcel’s way

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