joelc's blog


I have been actively trying to be an advocate for living with ALS. To choose life instead of death. I have also tried to dispel some of the misinformation concerning tracheostomy's and encourage people to consider getting one. A trache and vent is so much better than trying to use a bipap when a persons breathing gets bad enough that they need assistance during the day. I am not going to preach the benefits here because I have done enough of that in this website.

Auxiliary Power

With ventilation equipment it is essential to have some form of backup power. We thought we had it under control as my vent lasts over 8 hours on its internal battery and we have 2. The vent also runs off my power wheelchair batteries. Then we have a battery powered suction machine and the lift is battery powered. We could last for over 24 hours, easily, if the power went out. Well, the power did go out one evening and was out for 12 hours. What we failed to remember was our bed needs electricity to adjust, so I had to sleep in my wheelchair. That was not the ideal situation.

ALS asstistive technologies.

I have a new assistive product. It controls the TV, satellite receiver, DVD player, VHS player, our sound system, lights and the bed. It can easily be programmed for anything that has a remote control. It is small and mounts on my wheelchair. It has a numbered pad that is 3 across and 6 down. There are 5 levels. I hit the button once and it starts scrolling down, I hit the button again and it starts scrolling over. I hit the btton again and it selects the function the LED Light is on. If you can still use your fingers you can use the keypad on the device. It works wonderfully.

Affordable Lift system.

I post this as a consideration for those that can't afford to purchase a lift and for those that don't have access to an ALS Society loan closet. We were fortunate to have one donated to us. If that did not happen we were looking at over $10,000.00. Totally ridiculous. I did a lot of thinking about how to build an affordable one before we were blessed by this donation. Anyway, what I would have done is this: Use 3 inch 'I' beam, we can purchase a 24 foot length for $110.00

Prepare early and completely

I was laying in bed last night thinking about this and had the wording all figured out. Now I can't remember how I was going to approach it! It is great to be getting older and not able to remember. LOL. This is going to be a 2 point post. The first point is that everyone should get things in place before needed and practice using them. Items like walkers or wheelchairs are easy to get when you need them, but even these should be in place before they are necessary. Don't wait too long and risk a fall.

PEG Story

The first tube everyone gets has a bell on the inside, to hold it in your stomach. It also has quite a long tube which has to be dealt with, usually by taping it to your stomach. Once the stoma has healed sufficiently, usually 6 weeks, there are choices for replacement, although this tube can last up to 2 years. A doctor has to remove this initial tube and install the replacement. After that you can change it yourself at home.

Pressure Sores

Sugar treats bedsores better than any antibiotic. I did some surfing, and here's what I found. Time Magazine/CNN Decubitus ulcers, or bedsores, have for centuries plagued patients and stubbornly resisted the efforts of doctors to cure them. But it appears that the sores, which result from the continuous pressure of the body against the bed, are succumbing to new versions of an almost forgotten medical approach:

Itchy skin - severe itching

Regarding severe itching; I have been in contact with quite a few PALS that have experienced itching that is enough to drive you insane! It seems to be an ALS symptom where the nerve endings become super sensitive. Since ALS is a neurological disease this makes sense to me and I have been bothered by this for about the last 9 months. I initially was able to deal with it by using Aveeno shower/bath Wash and Tide Free for my clothes. Also Gold Bond. But the last 2 weeks I have been plagued with unbelievable itching on my legs and around my belt line.

Feeding tube on low FVC

I had a PEG installed Jul 17, 2007. Several months before my FVC was 30% and I was having extreme trouble swallowing and was getting nervous about my condition. Since I was not getting any support locally we went to a major centre and talked to a respiratory surgeon, he tested me and found my FVC had improved and was 40% (according to his test), he pushed for a PEG ASAP before breathing got worse. I agreed to have it done.

Interview we did

 . We were interviewed in January (2009) and the article just came out in the Vancouver Sun and the Province newspapers Feb 17th. It was done by the ALSA in BC as part of an ALS awareness campaign. Here is the content: “I try to be a positive voice”