Adapting To IBM

My Myositis Journey

Posted by dave on January 23, 2024


I've been on my inclusion body myositis (IBM) journey since about 2007 and life now centers around my home and a power chair.

I can still transfer to and from my power chair so being able to stand is key. I must keep my legs and claws as strong as possible, for as long as possible. I use rotation to transfer and need three of four anchor points to prevent falling.

My mission is to make life as easy, and as fulfilling as possible for me and my wife.

Hope these ideas can benefit others on the IBM journey as I have benefited so much from theirs.

Our Home

We downsized to a house with master bedroom, office, kitchen, dining and family room on the first floor. The office allows me to "dock" the power chair to my desk.

Home Adaptations

  • Permobil M3 Corpus power chair with lift option
  • Phoenix portable folding power chair with cushions for travel
  • BioBidet BB2000 bidet toilet with riser, hand rails and foot stool
  • SmartThings home automation with Alexa voice control
  • Sleepwell electric adjustable bed with heated bed pad
  • Golden lift chair with riser
  • Surehands overhead lift for shower and toilet (future)
  • Bruno stair lift to basement
  • Bruno platform lift to garage
  • Ramps for exits and back porch
  • Pedaling exercise machine with easy view of TV
  • Folding massage table for dressing and exercise
  • Warm easy-off pants with suspenders
  • Warm lap blanket
  • Lever door handles
  • Large handle utensils

Handy Tools

  • Small chair pouches for phone and easy-access tools
  • Small crescent wrench
  • Buck easy-opening folding knife
  • Scissors
  • Vinyl electricians tape
  • Tie wraps
  • Thin nylon cord

Personal Computer

  • Easy touch keyboard and mouse
  • Low friction mousepad
  • Fat stylus wrapped with vinyl tape
  • Keyboard "flow" on phone with fat stylus
  • Starting to use voice typing

Next "Steps"

The next bridge to cross will be when standing becomes too difficult. I'm looking at sit-to-stand machines that can help.

Last Thoughts

  • Stay as healthy as you can and prevent falls!!!
  • Don't look back, look forward and plan ahead
  • Remember to keep enjoying life to the fullest

And keep counting your blessings. God is letting you down easy. Use the time wisely.

Dave Hardin