Living with IBM

I am a 79 year old male and diagnosed with IBM in April 2010. I have a swallowing disorder, my right hand is weaker than my left and my left leg is weaker than my right. I wear shoes without strings and use slip over shirts as shoe strings & buttons give me a fit. I paddle a kayak twice weekly, swim twice weekly for 45 minutes each, but have to use a pull buoy for free style but no problem with backstroke. I also walk or ride bike 4-5 times a week. I'm not boasting, but just describing some of my activities and limitations. I would like to hear from some of you regarding how IBM has altered your lifestyle. I'm not taking any medicine or under a doctor's care for IBM. I'm Bobby Griffith and reside in Hampton, Va.

Hi Bobby,

I am a 73 year old male living in Wokingham, England. Think my IBM started overseas in the 1990s but formally diagnosed in 2010. As with you, my doctor has no knowledge nor is prescribing any treatment. I used to walk quite a lot bit have become weaker necessitating use of a frame in the house and occasional use of a rollator outdoors but am now so slow we have sourced a wheel chair which is much quicker and safer. I am torn between trying to move about normally but am afraid of falling with all the attendant complications. I cannot lift my left leg any more and the right about 10cm off the ground, fingers very very weak, Thumb and grip through palm of hand still strong but restrictions in strength of shoulders restrictive. 2/3 years ago I was walking with the rollator up to 1 mile. Seems the disease just slowly progresses and no-one seems able to provide a look ahead. Jury out re exercise good or bad, my life style sedentary so maybe what you are doing is best. Time will tell. We have adapted our shower to make it east to get in and out plus have had to invest in a lifting style toilet seat and chair to help get back on ones feet after sitting down. Be has been raised to get up form lying position with grab bars to help. Sorry if all this is boring or depressing but it is simply my experience to date with Mr IBM!!

Respond if you have time

Regards and good luck


Hi Bob

I am a 77yo male diagnosed with CIDP (a neurological disease) in 2013 after falling down numerous times. Diagnosis later 2014 changed (after a muscle biopsy) to IBM. It has mainly attacked my legs (getting out of chairs, climbing stairs, etc. I walk my dog twice a day (maybe 1/2 mi each) still climb stairs slowly. Go to gym twice a week, mainly working on my arms (leg exercises hurt too much) Main symptom is quick fatigue, small chore sends me to the recliner, general lethargy. No sharp pains just general lethargy--life of a couch potato :-). My left leg is stronger than my right and my right hand is stronger than my left but the left is fine just a little weaker.

There is a Myositis group in San Diego that has a number of IBM people--I don't think any of them (including me) would be able to kayak or bike ride

Another Bob


Sorry you have been diagnosed with IBM. It is a disease that takes and takes and as now there does not seem be any effective treatment.

I was diagnosed with IBM in Oct of 2005. At the time I had full access to the National Library of Medicine and I searched what was known about IBM. There was not much, but I did get an idea where IBM was taking me. A couple years later I fully accepted what my fate was. In early 2008 I began discussing with my wife about moving to a one level house. We live in a 2-story farmhouse with full basement that we had bought in 2003. It a house we both love. We had added a privacy fence that required/allowed I buy a welder and an over-done garden shed. Moving did not appeal to either of us. So I started doing research in early 2008 on stair well chairlifts, but I was not enthused with them, because I knew I likely would need a wheelchair. I stumbled onto a site for residential elevators. After inquiries, talking to a contractor friend, and visiting a house that had a residential elevator, we decided to have one put in. It was not cheap, but moving would have had significant costs as well. The elevator representative recommended we get a prescription for the elevator to avoid state sales tax. Avoiding state sales tax and taking a medical deduction on out income tax helped defray the cost of the elevator project. In 2011, we remodel the bathroom I primarily use. We put in a low-sill shower with both wall shower and hand shower, a handicap U-shaped seat in the shower, and lots of grabbars, and a high toilet with swing down grabbars. This year we put in the high toilet with swing down grabbars in the main floor bathroom. We are in the process of having a ceiling heater added to the upstairs bathroom, above the handicap seat. Since the wall shower does not hit the showerer who is sitting on the handicap seat, it is chilly without a heater. All the bathroom renovations have been made with prescriptions that help to make them financially palatable. You can do research and see where IBM will take you. I suggest you do and make plans for that time. Don’t wait until you fall and break a kneecap or something (I’ve broken my left kneecap twice). While dealing with that you won’t be able to get the renovations made. It takes time to arrange a contractor and get every ordered and there to install. Oh, on grabbars etc., the correct height of the grabbars for you is determined by your height and your physical ability. Other changes I’ve had to make include giving up use of our camper and my pickup with standard transmission. Got a Honda CRV with automatic transmission. I like the seat height.

As for your exercise/lifestyle program; if you enjoy it, keep doing it if you can. But, don’t be prideful. Be quick to adopt a cane if needed and a walker when that becomes a good option.

The one thing I have learned is that the best option we have is to accept our IBM and adapt.


Dear Bobby,
I empathize with what you are experiencing. My husband is 64 and began experiencing muscles weaknesses several years ago but was diagnosed in 2015.He was walking in up to February 2015 and today he is without use of lower and upper body extremities and can barely eat and talk.We modify our home to accommodate him–added handicapped bathroom, ramps, and it was not cheap, practically in debt, however, he still has not had an opportunity to use them because he is bedridden and sleeps most of the time, has to have assistance .We also obtained a body lift get him up.
He is taking in home therapy and IVIG treatment. His neurologist stated this treatment is to slow the progression of this illness? You think?
Our life has drastically changed. In 2010, we were traveling but I recall my husband experiencing a couple falls and each year more and more. Today my husband is blessed to go a day being pain free and able to just sip coffee through a straw or sipper.
It is one thing to understand what the symptoms-are for IBM,but it is far better to know “if there is a cure and its prognosis.” We both try to remain positive in our attitudes and have remain thankful.
Caretaker & wife,Linnie
Husband diagnosed 2015


Thanks for your comments. It just isn't fair to have to endure this dreadful illness. Your maintaining a positive attitude is very important and hopefully one day in the near future a cure can be found for IBM. Keep your chin up.