Progress report 2, June 2007

The Lord blesses and encourages me daily through His Word.
May the God of all grace who called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect, establish, strengthen, and settle you. To Him be the glory and the dominion forever and ever, Amen
1 Peter 5: 10-11.

Physically, changes do continue.
I am now losing strength so that walking is becoming much more difficult. Stairs are really becoming a hurdle. At the same time breathing independently is becoming rare. The use of my bi-pap machine has increased to 19 or 20 hours per day. On some days I do push myself to do without for longer periods, but generally other than meal times and other breaks I am on the ventilation system. For instance, on Sundays, when I attend church, I do sit quietly in my pew (without bipap machine) for over an hour. I have two bi-pap machines, and use one in the car when driving. The purpose of the second machine is to be a back up if the other machine fails. To courier a new machine would take at least a day, and that is much too long to go without breathing. I also have two batteries each lasting for 7 hours of bi-pap use in case the hydro fails.

One of the things I can do well yet is drive the car. Driving takes little effort, and even driving long distances do not tire me. Using the bi-pap when driving also has advantages: I have found that in crossing the border to the US, the customs people just take one look, and wave me through without asking a single question. Sort of a nice benefit to have!

Having ALS requires a lot of adjustments. We need to apply quite a few changes to our home. Doors have to be widened, the bathroom has to be gutted and rebuilt with a walk in shower, handicapped sink and toilet. Access to the house has to be improved by building a level deck from the front porch to the driveway, and a chair lift placed on the driveway to connect to the deck.

I have a push wheelchair, and an electric wheelchair. Right now the electric wheel chair is not very useful yet, because I cannot use it in the house nor can I take it along when I go away by car. First, my van needs to be modified with a chairlift so that my electric wheel chair can be taken along. There are many sources of financial help including the March of Dimes society, the ALS society etc. who will help with some of the funding for renovations and retrofitting vehicles for handicapped use.