My name is Scott, I was diagnosed with ALS in March of 2008. My wife Peggy and I have been battling hard for a few years now and are doing well.
ALS and the Battle to Continuously Adapt
As we all know, ALS is a devastating disease fraught with many physical and mental challenges. In the winter of 2008, I was an active 46-year-old playing tennis regularly while working diligently with my wife late nights and weekends to build a new home. Now, 2 ｽ years later, I sit here writing this letter bound to a wheelchair with little use of my arms and legs, debating the merits of a tracheotomy. Funny how things go sometimes. Even with all of the negative events of the last two years, we keep plodding along, trying to foresee the next challenge. Fortunately for me, my wife Peggy is my best friend and primary caregiver. Together, we try to stay one step ahead in the game to anticipate any future problems. Mobility, communication, hygiene, and breathing are probably the most prevalent issues we deal with along the journey. Continuously adapting to these changes brought about by ALS has been extremely important to maintaining a well sense of being and a high quality of life standard.
In our case, ALS hit my arms and shoulders first so I was able to get around with a walker initially. As time went on, I began to get a little shaky and falls were prevalent. I found a Hoyer lift on eBay which helped us a lot. My wife is about half my weight so anytime I would fall on the floor, the Hoyer was used to pick me up. I eventually migrated to the power chair which has helped tremendously. The power chair along with a ramp in the garage and a wheelchair van has allowed me to maintain independence in the home and allowed Peggy and I to basically go anywhere we want (including the grocery store, darn I used to have an excuse not to go ; –).
So far, I've been able to speak pretty well but have lost the ability to type on a computer keyboard. Software tools like Dragon Naturally Speaking and other free on-screen type keyboards have helped a lot in this regard. Dragon is great because it allows me to dictate letters and e-mails by simply speaking into a microphone. I've been using it now for about six months and it works great (I'm using it now actually). Eventually, I will not be able to speak and will need a speech synthesizer such as a Dynavox unit. It's a good idea to record your voice while you can still speak as it can be used to generate the synthesized voice in the future. Eye tracking devices to allow mouse like computer input are available as well for future needs.
Personal hygiene changes are probably the most humbling issues to deal with. Peggy helps me a lot there with toileting, shaving and showering (I can still brush my own teeth with an electric toothbrush). We bought a spill proof urine bottle which is really handy if I have to go to the bathroom while in bed or while traveling. Since I'm still able to stand, I am able to get from my power chair to the toilet or to a chair we have positioned in the shower. My legs are fading fast however so we are currently looking at modifying our second bathroom tub shower to a roll in shower. This will allow the use of a rolling shower chair which can be positioned over the toilet as well as rolled into the shower. We are hoping that this solution will help us with any personal hygiene issues in the future.
Breathing issues are the most important to monitor since pulmonary problems seem to be an ALS patient's biggest mortal enemy. My Bi-Pap machine is my friend. I tried to get it as early as I could qualify and forced myself to use it every night to help with breathing while sleeping. It was a little hard to get used to at first, but I've found the machine to be extremely helpful in eliminating the early morning headaches and fuzziness that I experienced earlier. I'm finding now that it's very helpful to use the machine a few hours during the day as well. We have placed the Bi-Pap and all related equipment on a rolling cart which helps us move it anywhere in the house that it is needed. We also added a cheap computer battery backup unit (40 bucks) to ensure that the machine continues working even if we have a power outage.
Continuously adapting to meet the challenges brought about by ALS is a battle worth fighting. A good quality of life can be maintained by foreseeing potential issues and adapting before they become big problems. One thing to always keep in mind though is that the needs of the caregiver are as important as those of the ALS patient so solutions to problems must be found that benefit both equally. Never give up... as far as our new home goes, with the help of many family and friends we eventually finished it and moved in, just in the nick of time.
August 13, 2010