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  • IBM INCLUSION BODY MYOSITIS


http://www.wikipedia.org/

Inclusion body myositis (IBM) is an inflammatory muscle disease, characterized by slowly progressive weakness and wasting of both distal and proximal muscles, most apparent in the muscles of the arms and legs. There are two types - sporadic inclusion body myositis (sIBM) and hereditary inclusion body myopathy (hIBM).[1]

http://www.wikipedia.org/

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EMBRACING MYOSITIS (IBM)

 

It was in 1989 that I had my first encounter with an uninvited guest by the name of Myositis. As it is with most folks when you get the diagnosis of a rare muscle wasting disease, besides the initial shock, I was clueless as to what this would mean for me and my loved ones in the years to come. It did take some time, but slowly I learned to look at this uninvited guest not necessarily as my enemy but as a deceitful friend who on the one hand is constantly chipping away at my life with changes I could not have imagined, but on the other hand who has opened my eyes to perspectives of my life and on life in general that I would not have been open to before the diagnosis. Any growth is accompanied by pain and perhaps growing pains is a good description of my journey with Myositis.

 Anyone that suffers from a rare neuromuscular disease will be able to identify with:  You have what??  My diagnosis of Inclusion Body Myositis is perhaps easier to pronounce than many of the other rare diseases that fall under the big umbrella of muscle wasting diseases that the Muscular Dystrophy Association of America has supported over the years.  Myositis, or inflammatory myopathy, as it is sometimes called, has the dubious distinction of being an orphan disease. This means that most folks, including some medical professionals, have never heard of it and probably will never meet anyone with this diagnosis. For the patient this all too often means years of either being told that the problem is all in your head or being misdiagnosed. It does help to know that there are three main forms of myositis: Dermatomyositis, Polymyositis and Inclusion Body Myositis and they all have distinctive features and different approaches to treatment. What they do have in common is muscle wasting. In Inclusion Body Myositis this is a rather slow progression but it is a relentless process. Over the years it will lead to total disability and dependence on others for your care.

 I had to learn about Myositis the hard way, by being diagnosed and treated for Polymyositis for 9 years with the usual Prednisone and Methotrexate. Yet with each passing year I was feeling a little weaker. I desperately wanted answers and after some prodding, switching doctors and a second biopsy it was determined that in fact I had Inclusion Body Myositis. Sadly this misdiagnosis of Polymyositis versus Inclusion Body Myositis still happens a lot. IBM as it is called for short, is known to not be responsive to the drugs I was given. As matter of fact, there is no known treatment at this point for IBM that has lead to a remission let alone a cure. I was on these drugs for too many years when I did not have to be!

 This year marks the 20th year of my having to come to terms with Myositis and in particular with IBM. In some ways I have grown in ways I never thought I would have to. I am watching others in their prime doing all the things I used to be able to do and never thought twice about, and now these things are beyond my reach. I recently read about a new movement called the ‘slow movement’ that supposedly is gaining a following. It is about folks feeling caught in the rat race who make a conscious decision to slow down their lives, to stop the hurrying, to breathe, observe, enjoy, relax and listen.  I think I joined this ‘new’ movement years ago.  IBM has forced me to slow down, to let go, to find out what is really important -  to grieve when there is yet another loss to be acknowledged and then muster the will to go on despite the circumstances. I learned to celebrate the small victories that may be noticeable only to me and I learned to refuse to see myself as a victim.

 In a way I see myself as fighting a war here, my very own personal war. A war - seemingly unwinnable, at least on medical terms. But in the end are we not all mortals? What really matters here is not if we win this battle but how we fight it. In this department we all do have a say. Is it my choice to be angry and bitter? (Believe me I have been there, too)  To have myositis was not a choice I made, but how I deal with it is my choice. My choice of remaining positive against all odds is often the more difficult one to make. Our first instinct when we encounter something bad in our lives is to fall into a negative state and Wallow In Self Pity. I did have my share of ‘WISP’days, I will admit to that freely. When I learned and accepted that it is useless and counterproductive to rail against the things I cannot change, I also learned to invite love and light into my life. I learned that listening to a fugue by J.S. Bach helps me to sort out my mind. Good music and uplifting literature are food for our souls.  It is important to read uplifting stories and poetry versus the daily papers with more than their share of negative news. And I want to remember to laugh and find humor whenever possible every single day. It did not happen overnight but over time I became proactive - I joined support groups and decided to learn as much as possible about Myositis.

 Yes, Myositis has changed my life. It is an uninvited guest that clings to me but also has given me the opportunity to learn and grow. It taught me to pace myself, to prioritize, to respect and nurture my body. It taught me to spend my time with those whose presence I find uplifting and healing. It taught me to ask for help and to accept the generosity of family and friends. It taught me that it is a daily choice to be happy despite the circumstances I find myself in and to make the most of each day. I learned that it costs much less energy to smile than to become bitter -  I have chosen to embrace Myositis, my deceitful friend whom I have to live with everyday and who keeps on stealing from me. On the other hand, Myositis has opened my life to so many other perspectives. Two years ago, with the help of my son I started a web page about my journey with Myositis. It has been a tool for me to come to terms with my disease and by sharing it on the internet perhaps I have given other Myositis patients a mirror to see themselves in my story.

 If you are curious -  to read more about - me and my journey with Myositis go to www.myomusings.com  or contact me at daxslaven@comcast.net

Submitted by Dagmar Slavin  09-10-09



To walk or not to walk

that is the question


 I was diagnosed with Inclusion Body Myositis in 2000.

 I have been getting progressively weaker and have adapted my lifestyle to suit these changes. Never in my wildest dreams did I ever think that my strong healthy body would suddenly start deteriorating at such a rapid rate. It has now come down to partial use of my right arm only. My left arm and legs are “just there for the show” to prove that I was once healthy.

Please don’t get me wrong I am not complaining or looking for sympathy, but merely making a statement as a preamble to my explanation of how I stay sane and out of the depths of depression. The deterioration has been steadily progressive from sudden unexplained falling, to using a walking stick (still falling), to walker (still falling), to manual wheelchair (no more falling), to power wheelchair and hoist to bed, toilet etc.  At least I don’t fall anymore.

  I lived for years trying to stay mobile even though I was petrified of falling over or tripping over the most insignificant things or even sometimes just falling for no apparent reason. I would not or could not use stairs of any height unaided and even then I really struggled. My heart would beat so fast out of sheer fear of falling that it sounded like a jackhammer in my ears. I actually often wondered if others could hear it too.

 Then came instant relief to my plight in the form of my wheelchair. The first time I sat in it the sense of relief was almost overwhelming. I knew then that I should never fall again. Why I persevered for so long, while cracking ribs, toes, fingers, etc I will never know. All I had to do was put my pride in my pocket and accept that I had a serious problem.

 I could no longer drive and could also no longer work. I ran my own tiling contractor business and now couldn’t get on sites where the chance of falling over building material, or into foundation channels was very real. I tried to work from home on various projects like telesales, call centre operator and others but as the disease progressed it became more and more difficult to use everyday items that up to now I took for granted.

 Then I discovered that I could manage to type, with some difficulty yes, but nevertheless still type. I started corresponding with people all over the world who have the same disease – until my arms, after a few years, got too weak to type. My son then showed me a program on windows that provided access to the disabled. I found an onscreen keyboard where I could point to a letter and click. This was quite a slow process but I was back on line.

 Recently I upgraded my computer and loaded a trial version of Windows 7. This program also has an onscreen keyboard but with the extra advantage of predictive text. This has really speeded up my typing whereby I only have to type the first two or three letters before a word selection panel pops up where I can select a word or ignore and type in a word from a chosen dictionary. WOW what a difference.

 Now that I have an upgraded computer it has become my communication tool and keeps me occupied all day until my family return from work.

  1. I struggled to open CD/DVD covers. Now all my CD’s are loaded onto windows media player (music at the touch of a button without having to struggle with loading CD or DVD
  2. Contact on line via Skype or Facebook – I can “phone” my friends for a chat. Hope I don’t get them into trouble with the boss.
  3. Email to friends all over the world
  4. Games to play until I am sick of them.
  5. I can draw, paint, make cards, certificates etc. Many other things if you have the programs or ADSL.

 All this, without even going on the internet. There are unending uses via the net with phones, cameras etc. Thank God for technology and the people who create new and useful things for us to use. I am so grateful for my computer. I’m not isolated anymore.

 I have been confined to my power wheelchair for the past year now, and try to keep myself occupied on my computer, writing, reading, chatting, and posting mainly on facebook, but I also use  www.articlesbase.com/authors/roly-clulow and I have a blog  at  http://blogs.health24.com/sickntired please read my blog and my articles then comment, rate and forward the address to others. I am continually adapting my personal hygiene, eating, sleeping, sitting to suit each stage, and I have decided to leave the quest for a cure to the doctors and scientists that are researching the disease and rather concentrate my energies on finding ways of adapting to the changes as they occur. In doing that I have managed to stay sane and less of a nuisance to others.

 I am happy to chat to anybody that wants to know more about the disease or just wants to chat you can reach me on powachair@gmail.com

Submitted by: Roly Clulow 11-10-09



Charles McGlade says:

I have just discovered your blog via the Faceboook Fight Myositis web site. Your writings have inspired me to tell my story.

I was diagnosed with IBM in 2007, but my first symptoms were in 2005.

My CPK was 5,000. My first fall was 2006.

I was hospitalized in 2008 from August to November when I could not walk anymore. Rehab got me to walk with a walker, but in the past year, I can only walk a few steps in my Invacare Get-U-UP lift.

I can not transition in the shower, so I have bed sponge baths . I have to be lowered and raised from the commode. All of this is done with my wife, who has been a saint.

I’m still able to get to work as an attorney with paratransit bus which takes me in my wheelchair to my office. My arms are much weaker, so I am being assessed for a power chair.

The weather- cold, damp days render me so weak, I can barely function. Long trips i the bus or train make me very weary. I was in the rehab with patients whose disease has finished them, so I’m grateful for every day I have. I had my 25th wedding anniversary. I got to see Game 1 of the World Series and my team NY Yankees won the series!

Keep up the good work and words! Peace to you and your family.
Charles from New Jersey USA

Submitted by Charles 13-11-09

Subpages (19): >Becker's Muscular Dystrophy >Carers the Unsung Heroes >Charcot Marie Tooth >Dermatomyositis >Duchenne MD >FSH Facioscapulohumeral MD >Help aids & equipment >Hereditary Inclusion Body Myopathy >Inclusion Body Myositis >Just for the love of writing >Learning to live all over again >Limb Girdle MD >Multiple Sclerosis >Myasthenia Gravis >Myositis General >On a lighter note -- humour for free >Poems and Prayers >Polymyositis >SMA Spinal muscular atrophy

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