The Diagnosis And The Response

Hey Team Muscles!

My diagnosis for Inclusion Body Myositis was on May 8th, 2014. But my general myopathy diagnosis was on December 10th, 2013. My legs and forearms/hand strength have been steadily and symmetrically degrading over that time (duh). So my father and I have been incrementally adapting to the whole thing. Now that we know mobility is going to be severely limited in the near future we have taken our efforts up a notch.

I thought it might be handy to list what we've been doing so that any newbees can get an idea or relate so they don't feel weird. I felt really weird until I started reading stuff like this. We're all in it together. By weird I mean having to deal with simple things that are no longer simple because of strength issues.

Here is the MRI, from May 8th, of my thighs versus normal thighs. It says it all. A normal thigh is the top row. My thigh, showing all of the damage is the second row:

Let's get the list going.

Incremental modifications to me and the house from December 10th to present:

• December '13 – I DJayed my last event. New Year's Eve. I kicked ass so I'm glad I went out with a bang. Folks danced all night!!!! The reason is I can't unload/setup/teardown/load my gear anymore. Friends helped with that but then I discovered standing for 4 hours didn't work out very well either. I have to say that when you stand you "own" the room and can put out so much more energy and really get into the music. Not so much with sitting. So I "retired".
• January '14 – replaced bathtub with walk-in shower (getting in/out of the tub was becoming dicey)
• February '14 – I officially quit walking my dog. He's a 60lb GSP with torque! Even if I could grip the leash (which I can't) he'd pull me over. Plus I couldn't defend him if another dog rushed us.
• March '14 – replaced all door knobs with handles
• April '14 – added another handrail to a set of stairs that only had one
• May '14 – started using my handicap parking placard in earnest. I figured little old ladies needed the spots more than me. I can still walk (slowly). My doctor said that I need to use the spots if they're available. The sudden falls have a greater chance of occurring over distances. Especially if I'm carrying something heavy....like a bag of dog food.
• May '14 – started shopping for a folding wheelchair so friends can move me over long distances at events, fairs, ballgames, etc. Handicap parking doesn't cover all of the distance. It was awful having to walk so slowly and carefully in a crowd and over streets at a fair I just went to. We had no choice. My friends had to be right next to me so I could hold their shoulder/elbow for balance. And they had to carry my gear. It was clear that being pushed would be easier/quicker for all of us. Time to lose the pride on this one Pdub.
• May '14 – Began architectural drawings for an addition to the house so I can live downstairs. I live in a split level: front door 1st floor, kitchen 2nd floor, bathroom/bedroom/home office 3rd floor. We are going to make the ground floor a "mini ranch". At least the "step" into the house is only 4 inches high or so!
• June '14 – Ordered a front loading washing machine. All of a sudden I have difficulty getting wet laundry out of my top loader. Especially towels. So we are going to set up the washroom with the washer/dryer next to each other, with opposing door hinges and up on two rows of cinder blocks. Now I can sit on a stool and move the wet to the dry! This is a bit embarrassing considering I'm 6'2" and 270lb. I used to be able to grab half a wet load and transfer it. Blech.
• June '14 – Ordered a lift for heavy groceries and the wheelchair for when I can't use the stairs. This lift will allow me to get to the 2nd level and kitchen. So we don't have to build a kitchen in the new addition. Saving money. This is where the split level came through! It's only 5 steps up to that level. And the square next to the stairs is big enough for the lift with minor modifications!

So now we are set for the major modifications related to my new lifestyle. In the future we are going to landscape the backyard so I can still enjoy it. The cool part here is that one of my clients is a landscaper. I'm hoping to trade my graphic design/web services for some cool yard action.

Outside of that my father and I will keep reacting to new things that pop up. Neither of us ever anticipated that I couldn't do laundry normally anymore! For example.

Perhaps, if you've read this far, you can make suggestions on what to anticipate next? How to find grants/insurance subsidies to offset expense, etc. Or? Ask me questions about the whys and what-fors on my end. I'm trying to be creative and practical and forward-thinking on these modifications. So that they may be useful to others.

I'll try to keep this up to date if new things happen.