WHEELCHAIRS, BEDPANS, AND WHOOPEE CUSHIONS!

Gene on His "Whoopee Cushion" July 30, 2008

Hi Everyone,

We thought we would use today’s post to just give you a brief update on how Gene is doing and what we have been up to. Where were you yesterday during the earthquake? We were sitting in San Diego at a place called the “Ability Center". The Ability Center is a huge warehouse filled with products for physically challenged people. This is not just your average medical supply kind of place. They have all sorts of products that help increase mobility, like “accessibility vans”, wheelchairs of every type, reclining lounge chairs that also stand up, home elevators, vertical platform lifts, ramps for the home, etc.; a whole new world to us. This place was much larger than we expected and very busy with many people coming and going with all kinds of disability needs. We are just learning about the world of disabilities and the many, many people that deal with all of this on a daily basis.

One important thing we are learning about ALS is to be prepared for our future needs before we need them. So we were shopping for what is called a “ramp van”. A ramp van has an automatic wheelchair ramp and special locks for a wheelchair to be secured into the place where the passenger seat usually is. We went for a test drive with our “mobility specialist” and it was a very impressive vehicle. When Gene does need a wheelchair, he will need a very hi-tech one. The van and special wheelchair will allow for us to still be part of the community and to go on small trips.

We also went back for the second time to the ALS Association because they are wonderful! They have a huge loaning closet filled with all kinds of “toys”! They had already loaned us a walker, a portable wheelchair, and a cane. But they had some more stuff for us. One of the things Gene misses most is being able to ride his bicycle. Yet, at the ALS Assoc., they had a stationary floor pedal gadget. He can use it in a chair and set the thing on the floor and get a little cardio workout and not have to worry about falling in the middle of the street.

The loan closet is filled with all kinds of “durable medical equipment” that someone with ALS might need. We don’t know where they came up with the term “durable medical equipment” (DME), but in case you have never heard this term before it means “medical equipment that is primarily and customarily used to serve a medical purpose, can withstand repeated use, and is appropriate for use in the home.” We laughed the first time we went into the closet, not knowing what to expect, all we saw were bedpans and bedside commodes and boxes of “Depends”. Gene says it’s okay if you want to laugh at his expense, he’s laughing, and anyway someday we will all need a lot of our own “durable medical equipment”; he’s just a little further ahead than most of us.

One cool piece of equipment they have loaned us is what we are calling the “whoopee cushion”; actually, it is a seat lift, but it looks like a whoopee cushion. It lowers Gene into a chair so that he does not have to use his leg muscles so much. Then when he wants up, he just leans forward, and it pushes him into a standing position! You have to be careful that the tension isn’t set too tight or it will launch you across the room; actually Gene likes it on the turbo launch setting!

We are planning to get Gene one of those comfortable recliner chairs that also help him stand when he needs to get up; I really want him to have one of these, I think it would be so comfortable for him! We are also thinking about our bed situation. Our flat, pillow top is too flat for Gene. He needs one that he is able to adjust up and down, though he doesn’t want a hospital bed unless it is big enough for the 2 of us to be in together; me too!

We are waiting for the insurance to authorize a foot-ankle orthosis, otherwise known as an FAO. This is supposed to give his right foot drop support and to help him walk a little easier; Gene is skeptical that it will. We are also waiting to be scheduled for a sleep study. Typically, as ALS progresses lack of oxygen is a concern, especially at night. They don’t believe this has happened to Gene yet, but we need to get a baseline. In the future, he will need to use what is called a bi-pap machine (a special breathing machine). These are commonly used by people that suffer from sleep apnea.

We will be going up to Irvine’s ALS clinic on August 5th and then to the San Diego MDA/ALS clinic September 3rd. We are a little disappointed that we can’t be seen in San Diego sooner, but we are not the only people dealing with “stuff”.

In the midst of all of this, we still have fun; how can you not with Gene around? Gene was able to go to lunch with a group of old friends. Of course his friends took a page from Gene’s book and showed up wearing Groucho Marx glasses and mustaches; he loved it! We have been to the movies with his mobility scooter; out for romantic dinners; and having dinner with friends. Gene went to the grocery store with me for the first time yesterday since last spring. We have also been able to attend church; that has been the best!

Well, now you are brought up to speed on what has been happening. It has been wonderful getting your emails and especially wonderful to be seeing many of you. This is a disease that one person cannot and should not handle alone and we are not, thanks to all of you. How we praise God for each and every one of our family and friends that have shown such love. We have also made many new friends; many that have suffered far more than we have. We love you.

As we end today's post, may we encourage you with these words...

Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.

1 Peter 4:12,13

Until the next time, we are...

Sorrowful yet always rejoicing,

Gene and Michele