Progress report 6 February 2008

Here is an update to let you all know how ALS is affecting me. ALS is a disease that will continue muscular degeneration. Also with me the effects are becoming more noticeable. Some changes since my last update are:

BREATHING:
I am using my bipap (Respironics Synchrony life support ventilator) full time now. I can go very short periods without breathing assistance, but barely long enough to have lunch. Increased use of the bipap has also increased pressure on my face, and it became necessary to purchase another face mask of a different design. I had been using a full face mask (something like the ones you see fighter pilots use) for sleeping, but it was wearing down the bridge of my nose and creating red wear marks on both of my cheeks.

My new nighttime mask is a new invention (produced by RESMED: a Mirage Liberty full face mask) and has a pillow admitting air under each nostril and a small cover for my mouth also admitting air. It is lightweight and does not rest on nose or cheeks, giving those a break so that they can heal. This mask leaves the upper face clear for the use of glasses for reading, which the other full face mask did not do.














For day time use I have a small mask with a prong bringing air to each nostril, allowing for speech, eating, drinking (using a straw) and reading.

I have also increased the pressure on the bipap machine to 6 E and 16 I (up from 5 and 14). The higher pressure inflates my lungs more, but does cause some nighttime problems. When sleeping, my face relaxes, and the high pressure lifts the mask off my face, causing noise and a loss of air.

MOBILITY:
My walker is getting less use, since my legs are having difficulty in supporting me, and this is of course aggravated by a lack of air when pushing my walker. So I have started making more use of my Jazzy 1113 power wheelchair, so that at least I would not need to walk, decreasing the need for additional air. Also, even when using my power chair, the lack of air is becoming more evident, and it was obvious that use of the bipap was needed on the power chair if I was to continue to use it.

I had asked the company that maintains and sells these chairs locally, if it was possible to mount the bipap machine on the chair, and run it on the chair's battery, but they said it could not be done. Research on the internet showed that it had been done. See:

http://mikebougher.com/12vdc_power_for_bipap_or_ventil.htm

The Jazzy 1113 power chair runs on 24 volts (two 12 volt batteries) and I asked a technical brother in my church advice if we could mount the 12 volt bipap on one of these. We decided to try it, and he built a very nice holder on the back of the chair to rest the bipap on, with a cigarette lighter plug wired to one of the two batteries, just under the bipap machine holder. (Thank You Brad!)

This worked fine, until we found out that when recharging the chair, the charging stopped when the least used battery was full. It is obvious that we will exhaust one battery in due time, and that the chair will not recharge because the other battery is still full.

As interim solution we have mounted a separate 12 volt battery for the bipap machine on the new holder on the back of the power chair, and put the bipap machine in the shopping net, and presto!


We have full portability: both mobility and a constant air supply.

Going shopping, of course one has to be impervious to the glances of those who think I have just arrived from outer space, but that is a small price to pay.

The next step to perfect this setup is to mount a 24 to 12 volt converter between both batteries and the new plug for the bipap. This will drain both batteries equally and resolve recharging issues.

This will remove the temporary extra battery from the bipap holder, and the bipap machine can then be placed in its holder, and the shopping net will be empty, cleaning up the present cluttered appearance.

FINE MOTOR SKILLS
The use of my hands is regressing. I can no longer write. Also the use of the computer keyboard gets very tiring after a while, and a lot of surplus letters start appearing on the screen.

As I am getting physically weaker, the Lord strengthens me with His comfort and presence. He gives me peace and contentment. I rejoice in His blessings every day. I depend on Him for every need, and He has greatly blessed me. His greatest blessing is the work of His Son, who has died for my sins.

Not what my hands have done
Can save my guilty soul;
Not what my toiling flesh has borne
Can make my spirit whole
Not what I feel or do
Can give me peace with God
Not all my prayers and sighs and tears
Can bear my awful load

Thy grace alone, O God
To me can pardon speak;
Thy power alone, O Son of God,
Can this sore bondage break.
No other work save Thine,
No other blood will do;
No strength save that which is divine
Can bear me safely through.

Horatius Bonar