Finally, after 10 years, I had the correct diagnosis for my muscle problems and it was IBM. Still navigating with a walker I attended my daughter’s wedding in May of 2010 on a farm in Valley Springs California. Navigating over uneven territory was tiring but I was able to do it. Navigating the stairs getting into the house was a challenge but assistance by wedding attendees made it possible.

It was becoming more difficult for me to get up from a chair, even a chair with arms. Having the same difficulty getting up from the toilet, my new son-in-law installed a ‘toilevator’ which raised the toilet about 3 inches. Shortly after that, one of my daughters installed a ‘bidet’. These two modifications I believe, are necessary or anyone having IBM. Getting in and out of the shower also became a problem solved by having a strap from the ceiling of the shower I could hang on to.

Realizing my Mobility what is becoming more limited, I found a older, used power wheelchair for sale on Craigslist. I bought it thinking it would be great to have a little later on. In July 2012 Jan and I attended the wedding or grandson in South Lake Tahoe. I was able to navigate the terrain in my Walker with the help of several of my children.

On my next appointment at the PMR in the fall of 2012, I was evaluated by a physical therapist for a power wheelchair. It was the delivered to my house about a month later. In January of 2013 I had a ramp installed at the back door of our house. This enabled me ride the new wheelchair outside.
In March of 2013 I found a 1996 Dodge van, with a rear chair lift installed, listed on Craigslist. Jan and I drove to San Bruno and purchased the van. Now I had 2 power wheelchairs, the older I kept in the van and the new one in the house. I was able to drive the van, exit the van using the cane, walk to the back of the van, take out the power wheelchair and attend my computer classes at the local College. However when I went to UC Davis I would take the newer wheelchair.

On my next PMR visit, I was informed that a phase 3, double blind clinical trial for IBM was going to be started at UC Davis. The trial was going to be worldwide with approximately 250 people and UC Davis would have six people to evaluate. The drug company, Novartis, was testing the efficacy and safety of Bimagrumab/BYM338 on Physical Function, Muscle Strength and Mobility in sIBM Patients. It required visits to the clinic every 4 weeks for testing and injecting the drug. I asked if I could be a participant in the trial and was told it would require an evaluation prior to acceptance. I was evaluated and accepted, the trial started in September of 2013. The trial lasted about a year-and-a-half. I would be accompanied by one of my daughters or my wife during each trip to the PMR during the clinical trial.