Living with and overcoming IBM


The past four or five months that I have been chatting with you via The Zone have been the happiest of my recent life.  I have told you of my family, my background and some of my experiences but there is one topic I haven’t yet touched so, here we go.

I sometimes mention my Scooter or wheelchair and you might have wondered what puts me there.  Well, I suffer from IBM – and we aren’t talking about technology.

Inclusion Body Myositis is an inflammatory muscle disease, characterized by progressive muscle weakness and wasting.  Sounds bad, doesn’t it?  Up until a few years ago,  little was known about it.  Very little research had been done due to the fact that it was considered a rare disease and research dollars were funneled to those illnesses that were felt to be more prominent.

Thanks to a  special new division at Johns Hopkins and ongoing research at University of Maryland Hospital, a little more is known about the disease today.  There is currently no cure and there are no medications that effectively treat the problem.  Some steroidal type medications such as Prednesone give temporary relief but cannot be taken over long periods of time. Intravenous immunoglobulin may also give some expensive but only temporary relief in a small number of cases.  I was given some good news by one of the Doctors who originally tested me though – there is one thing about the disease that you can count on, Inclusion Body Myositis will not kill you.

Early signs of the disease are a loss of balance and frequent falling.  Most patients also develop a condition called dysphagia, difficulty swallowing, and weak wrists and fingers and atrophy of the forearms and thigh muscles. 

I noticed a loss of balance and occasional falling almost eighteen years ago when I was 63 and newly retired.  I just attributed it to age.  It got progressively worse and after a battery of tests and lots of falls, I was diagnosed ten years ago by Johns Hopkins as having Inclusion Body Myositis.  

To supplement my retirement income and to help maintain my mobility, I worked three days a week in a golf Pro shop.  This, as much as anything else I did, helped me to stay on my feet and maintain my lifestyle longer than any other. I learned to eat slower and take smaller bites which compensated in some degree for the problem of swallowing.  Certain foods are easier to swallow than others.

Two years ago I gave up driving a car altogether and it was probably one of the hardest decisions of my life.  It took away a great deal of my feeling of independence.  Then,  last year,  I had to stop trying to walk at all after breaking a knee cap on my left leg which had gotten too weak to support  my weight.

So, that is the reason for the Scooter which gives me free range of the apartment, trips on my own to the mail box, the library across the street and to the new restaurant in the building nearby.  The wheelchair is for trips with someone else in their automobile to the store or to the doctor.  Any exercise that you can do and any other activity that keeps you moving about and not siting in one place will help you to maintain your mobility for a longer period of time.

I still live independently in an apartment though.  My wife passed away a year ago, my family assists me in the gathering of food and I keep more than occupied with my participation in the ZONE.  So there you have it, the short version of life with IBM. 

I would be more than happy to talk with anyone about IBM if it would help you understand it better and there are great doctors at Johns Hopkins Bayview that deal with Inclusion Body Myositis every day and who are awaiting your call.

Don Langrehr

If you have questions about IBM or would just like to offer words of encouragement, please post comments below or send e-mails for Don to blogs@thezonemag.com.

 

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5 Responses to Living with and overcoming IBM

  1. Robin says:

    Great story! I think you are amazing : )
    Keep on Keepin’ on!
    Robin

  2. Anonymous says:

    I also think you are amazing and an inspiration to all!!
    Dona

  3. Sarchasm2 says:

    I too have IBM. Was diagnosed in 2000. I live in South Africa and keep in contact with around 200 fellow sufferers.
    Stay Strong

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