Feb 252016
 
On the left, the way we were in 1996. On the right, with some of my grandchildren and great grandchildren, late last year.

On the left, the way we were in 1996. On the right, with some of my grandchildren and great grandchildren, late last year.

Normally, my “Chronicles of Disability” consists of annual reports on the changes in my health over the previous 12 months. I forgot to post a report for the year 2014, but perhaps it’s just as well because there were very few changes – – just more weakness in general. So now we come to this major milestone. It has been 20 years since I was diagnosed with inclusion body myositis (IBM). This rare muscle wasting disease is described as “slowly progressing”. That may be true one month to the next or even one year to the next. But when the person I was in 1996 is compared to who I am today, the contrast is jaw-dropping.

Twenty years ago I didn’t think there was much wrong with me. Yes I was slowing down in my running, and my golf shots seemed to be getting shorter, and I did fall once in a while, so what? I was 55 years old, just normal aging? I could still hike mountain trails, jog (slowly), show up for work every morning, work around the house, go to parties with my wife, take long driving vacations. Life was very good.

Now, I very nearly meet the criteria of a quadriplegic. I can’t move either of my legs or my left arm. I can only raise my right arm a few inches above my waist. I cannot stand, walk, or transfer without the aid of an overhead lift system and a caregiver. This will probably be the last year that I am able to continue feeding myself, unless the new drug (BYM338) gets released and actually works. My fingers don’t bend and my speech is getting quite weak. This is making my writing avocation more challenging and I may need to give it up within a year or so. Unrelated to my disease, but definitely affecting my life, my wife died of her own rare muscle illness in 2012.

My current home features the ultimate "open floor plan". My wheelchair loves it.

My current home features the ultimate “open floor plan”. My wheelchair loves it.

At the time of my initial diagnosis, we were living in a two-story four-bedroom home overlooking the mountains of southern California and a little slice of the Pacific Ocean. Today I am living in 250 square feet in an assisted living facility. The room is comfortable, the view isn’t bad (mostly of an ancient olive grove), the caregivers are friendly and helpful, and the food is very good. My days are spent doing what writing I can, either for Huntington Manor or for my Life Disabled blog, but that work is getting more difficult every day. So instead I am catching up on a lot of movies and television and doing a little reading. I also like to take my wheelchair out on long jaunts through the countryside and down to the local business district of Poway. Huntington Manor is launching a major renovation of the facility and I have been promised one of the beautiful new rooms that will overlook the garden and the hills beyond. That is enough to keep me motivated to stick around until the project is finished in 2017.

When I first started this blog, and when I wrote “Rolling Back: Through a Life Disabled” I suggested that the newly diagnosed read about my experiences to be properly prepared for what lies ahead. Now with a new treatment on the horizon, it is quite likely they may never have to experience this severe of a decline.

I have reposted many of the pictures and captions from the past 20 years. I think they tell an interesting story about the effects IBM has had on one person’s life. As you’ll see, I have remained generally happy and hopeful throughout that time, but I must admit that my general mood has been declining. Recently, I saw a neurologist who lowered my expectations for the new drug by pointing out that it would not be of any use for the muscles that were already dead and that, in my case, most of the muscles are completely destroyed. The most I can hope for is maintaining the minimal capabilities I have now.

By the way, one of the special pleasures I get these days is when someone purchases my book. It’s available on Amazon — just click on the link on this page — seven dollars for paperback and three dollars for the Kindle edition, or free if you are using Kindle Unlimited.

  20 Responses to “Chronicles of Disability: Twenty Years Since Diagnosis of IBM”

  1. Mike,

    Thanks for the update!

    Joe

  2. Mike, thanks for sharing again. Your book and your blog are essential guide books for traveling in myositisland.

  3. Mike, as usual you describe perfectly what will lie ahead for most of us. But between the lines anyone will realize that you are not ready to give up yet.

    I am a little ahead of you in terms of length since my dx in 1989. But I think in my case the dx came fairly quickly since I already was under care of a Rheumatologist who in those days treated me right away as if it was PM. Still not unusual even today, if you have orher underlying autoimmune problems. In my case Lupus. Later Sjoegrens was added to the mix. So our progression was in a way a bit different, perhaps also since I am female and have those added autoimmune problems.

    I think we both had to face the “this is what it is” and learned slowly not only to adapt but yes, the most important, also to accept and not grieve too long for our ongoing losses.

    I have always considered you my hero and still talk about you to many other folks. I guess we are both warriors in our own way. Please hang in there and keep posting as long as possible. Wishing you continued strength and courage for your journey. I do look at mine as a journey of self discovery. xoxo Dagmar

    • Thank you Dagmar. I always enjoy hearing from you. You are certainly correct that we must not linger over our losses. That can easily be a life consuming process.

  4. Thanks for this post Mike. All the best to you and yours.

  5. Thank you Mike for your most recent and most helpful update. You really are an inspiration to those of us who are only part way along the road of IBM. In my case 5 years since diagnosis but progressive slow weakness since 1998. As you say acceptance of our condition is the most difficult to get to grips with, but it comes together slowly.
    One very positive aspect of this disease is that I have made many new friends through the various support groups from all around the world. While my physical world shrinks, my world on my computer is expanding to encompass knowledge and friendship. While I can’t travel in the physical sense I can travel to many far away places I will never get to see except on my PC. I send you my very best wishes. Lynne x

    • Thank you for your comment Lynne. As one who has never traveled beyond North America I am also enjoying hearing from and getting to know the rest of the world.

  6. Hi Mike, thank you for the lengthy update. I check in almost daily and can only imagine the effort that constructing such an update takes. Your writing is as clear as ever and your spirit is inimitable. My sister is having a lot of medical interventions these days but, astoundingly, her cancer treatment has stopped her decline in that area. The future is unknown for us all.

    With admiration and pride to have one who sprang from the same seeds as I, and has shown us all the very highest in how to live with adversity.

    Peace,
    Stan C.

    • Stan, thanks for your never-ending support. It does take a bit of effort to write a post however it is the physical limitations that hold me back is much as it is my natural inclination to procrastinate.

  7. Thank you for writing of your journey. I was recently diagnosed last October. First noticing weakness in my left arm and hand about 3 years ago. I see a lot of similarities between us when you first found out. I am still working, living in a 2 story house that we are preparing to sell and move into a one story, a loving and supportive wife and friends. Good luck and prayers to you.

  8. Mike

    I know what you mean I was diagnosed in 99 at the age of 26, not with IBM but DM and then when I was 35 they said it had morphed into IBM . Maybe because of this confusion I spent probably the first 12 years thinking recovery was just around the corner but now I am 42 and I am sitting here in my wheelchair watching my former cohorts still surfing 50 foot waves out at the place that we helped discover back in the early 90s. Somehow I have still Been able to create a good life for myself, I was able to meet my wonderful wife and we have the most amazing daughter I could ask for, but like you said Mike the last couple years have been hard as my decline has been quite dramatic and I realize that I am near the end of my journey .

  9. Mike, I just wanted you to know that when my husband was first diagnosed with IBM I bought your book. Although it was a rude awakening – what lie ahead, it was also insightful, helpful and positive. It made me prepare and come out from under my rock of denial. And that was the best thing that could have happened. So….when you ask “why me?” I am so sure it is because you were sent ahead to help the likes of me.

  10. Mike thank you for sharing your story and showing us what we can achieve when we put our minds to it. I agree with comments made by others who have written to you and I also try to adapt.At this time I can drive still and use a walking frame as I have fallen several times.Like others I cannot use disabled toilets as I cannot get lift up so I carry a toilet seat with arms with me.I have put pavers in between high rise steps to make it easier as one of my falls fractured my ribs and the steps were killing me.
    Regards and best wishes ..

  11. Good to see your post Mike. Think of you often – you have been such an inspiration to us. Got a Prism ceiling lift last spring, and it has been such a great help. Jack now has a home health aid every morning to get him up and dressed, and I put him to bed at night. That lift has been a blessing! Thank you!

    Maureen Girr

    • Thank you Maureen. I always enjoy hearing from people who see the benefit in the ceiling lift.

      Mike

  12. Hi Mike,

    My name is Geeta and I am from Mumbai, India. I have been following your blog very closely since July 2015. That is when my Papa was diagnosed with Myasthenia Gravis. Initially the doctors gave their diagnosis that it may be ALS or polymyositis. I started researching online and hit upon your blog. Since then I have been a regular follower of your articles.

    During my period of crisis, you were my source of strength and inspiration and you still are. What I admire about you is your courage, creativity, innovative, out of the box thinking and above all your humbleness. I got to know more about you from your blogs and the book. I have been recommending it to people coming my way. Apart from building an understanding of how IBM progresses, at a personal level, it has helped me face challenges and rise above them. One of the major change that I have seen in myself post my ‘indirect’ interactions with you is that I have become more proactive and no longer consider problems as problems but attempt to find solutions or workarounds. Never say ‘No’.

    Every now and then I stop by your blog to read through your updates and to check on your well being. How I wished I could meet you, my hero and my guide. I have got an opportunity to work in New York. I am here now and would like to pay you a visit. Is there an email ID I could reach you on and connect with you?

  13. You are so strong, even though your muscles may not be. My mom battled this disease as well and the way you stay positive and always adapt is inspiring. Thank you for telling your story and reminding many they are not alone.

  14. I am a 71 year old man and have IBM now since approximatly 2002 at age 56, after chemo treatment (CHOP) for NHL (Non Hodgkins Lymphoma). The onset of my disease was has been slow but steadily affecting all the muscles in my legs, lumbar and elbows.
    At first I noticed that my knee muscles (quaricepts) were becoming very weak. I had a hard time standing from about 2006 (age 60, onwards up from a lower seated position.
    Over the last few years since 2012, I am pretty much confined to a wheelchair as
    I can only walk just a few feet with a walker and PSW assistance. For about 5years,
    2006 to 2011, I took monthly IVIG treatment at a local hospital. At first the monthly
    Immuno-globulin IVIG appeared to slow the untreatable and incurable disease a bit,
    but in 2012, my nurologist didn’t want to prescribe any more treatment as they have
    concluded that IVIG is not effective for IBM. Right now, I’m still managing to live in
    my own home with the aid of a PSW that comes in 3 times a week to give me
    physio theraphy on my legs and shower assist.

  15. I’ve been diagnosed with IBM now for 13 years now. My legs have gotten progressively
    weaker, especially the thigh muscles now and my lower back (lumbar)muscles.

    In the last 2 years, I’ve had to go from toilet boosters to a motorized toilet seat
    (Lifftseat) , and a from a regular power chair to a power chair with a power lift seat.

    I’ve had problems getting myself out of bed because my back muscles are so weak
    now, and as of this month, I’m going to a multiple position Rotec home care hospital
    style bed. I have a custom leg brace that I wear on my right leg to keep it from collapsing
    on me if I put my weight on it, and use a SuperPole to get out of bed as well.

    So far I’m living in my two storey home with stair lifts, two power chairs,one upstairs
    and one downstairs for para-transport to doctor/dentist. I’m hoping to continue living
    in my own home for a few years more, if I cand still do this with the help of a PSW
    that comes in for 4 hrs every 2-3 days. I’m 71, hoping to continue to live in my own
    home with a modified bathroom and all the disability devices I’m needing. I’m
    not giving up my fight with IBM.

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