The story of Craig
Here is my story,
1999 at the age of 55 I first noticed weakness in my legs. I had to push myself up from a kneeling position and had to stop running after a short distance.
2006 I mentioned my leg weakness to my doctor who recommended leg strengthening at the gym.
2007 after going to the gym 3 times a week for a year, my legs continued to weaken and I had trouble climbing steps.
2009 A neurologist at an MDA hospital diagnosed me as having Sporatic Inclusion Body Myositis, based on all my symptoms and an EMG.
2010 I started using a cane.
2012 I purchased a walker, scooter and lift chair.
2013 I changed medical plans and they required a muscle biopsy.
July 31, 2014 Kaiser
The muscle in my legs were too far gone so a second biopsy on my arm was taken and confirmed as SIBM.
2014 I tried physical therapy which proved to be ineffective, just worsened my abilities the rest of the
day.
2014 We remodeled are master bath to accommodate a wheelchair and raised the toilet to 26 inches.
2016 was the year everything became worse and I started to realize all my limitations. I received a power chair through Medicare and a ramp for our front door from the VA. I also purchased a Toyota Van with a Braun Ramp to allow my wife to transport me.
2017 I am having are master bedroom 8 foot window converted to sliding door as an emergency exit.
2018
JAN. The VA paid for the installation of SureHands ceiling lift. It runs from over our bed through the dressing area and takes a 90 degree turn into the toilet/shower area. There is a turntable to allow positioning over on into the toilet.
FEB. I have noticed significant lose of strength in legs, arm and fingers. It is now very difficult to walk and maneuver away from my power chair. Cutting and holding knife and fork cumbersome.
DYSPHASIA is worse and talking while eating impossible.
APRIL 14
Noticed more difficult to get out of bed.
APRIL 15
I had difficulty getting out of my power chair and fell back into it. I have now realized I have reached that next stage of this miserable disease where I must start using my ceiling lift.
I laid in bed and realized how my life had changed again. It will be very soon when I won’t even be able to stand to have my pants pulled up. Soon I will be at a point where I feel like a complete noodle.
October 5, 2018
I can no longer transfer and must rely on my wife Lynne to use our ceiling lift to lift me in and out of bed, into shower, on to toilet and on and off my power wheelchair.
Lynne must do all the work when dressing me laying on the bed.
It is very difficult to move my legs or turn over in bed. I use my adjustable bed to help me roll to my side.
My ankles are starting to twist and and I now wear custom made Prosthetic braces.
September 16, 2019 I received 11 hours per week VA Home Care.
I started with 2 hrs of home care M-Th and 3 hrs on Fri. to assist me out of bed to the Toilet, Shower, getting
dressed and into my Power Wheelchair.
2020. Continue to lose strength in arms and hands. Very difficult to comb hair or lift a sandwich to my mouth.
Dropping objects are common and picking up impossible.
Day by day, no looking forward or back.
2021 muscle wasting continues as expected. Can do very little.
My care giver gets me to the toilet, shower, dressed and into my power chair using my ceiling lift. Once in my power chair I remain until my wife lifts me into bed at night.
I can still brush my teeth and take my meds once they are put in my weekly pill box. I’m pretty much limited to what I can do except for driving my power chair. I can still feed myself if prepared in small bites. Most my electronics are voice activated and I can use my iPhone keypad if attached to a holder.
I have a great support system which includes my wife and family, neighbors, Kaiser, The VA, TMA and MSU as well as all my Myositis Friends on Facebook and the FB group “inclusion Body and Myositis (open group).
Craig