I recently had a blog follower request for me to cover today’s topic. Shout out to her and her husband as they continue their fight with ALS.
Living with ALS on a daily basis requires strong emotional and physical fortitude. Thankfully, there are tons of equipment and gadgets that help make things easier. But, as you will see , things pile up quickly and with them, significant costs. That is probably the single biggest factor , at least in my opinion, that affects a person’s longevity. Second only to the disease progression rate. I will preface this by saying that I am fortunate and blessed as a military veteran in that I have access to all of my equipment and care covered by the VA. The average American is left to acquire needs on their own. Either through insurance or out pocket or other means. Everything here, I have or have used. Of course there are variations of all of the items , but it should give you a good idea.
First, I will briefly touch on medication. The only two approved meds in the US are Riluzole (pill) and Radicava (infusion. With the infusion comes either a trip to an infusion center or home infusions. I have done both and receive them at home, now. I opted for a medi port to save from having an IV placed every cycle. Other meds I take are Neudexta for PBA (uncontrollable laughing or crying , common with ALS), and muscle relaxers Baclofen and Tizanadine. I also take some other supplements as well.
Early on in the disease, mobility was the biggest problem issue I faced. The first equipment I used was a cane. Graduating to a rollator/walker and now a power wheelchair. The PwC I have has many adaptations including various position adjustability , cushioning and head switches. It also has a plethora of attachments for equipment. Of course I have to transport it, so we have an adapted van. There are tons of knickknacks and gadgets that I have for various uses, such as feeding aids. To go along with mobility, I have two lifts that allow for a caregiver to transfer me when I can no longer assist. One is a ceiling lift over my bed. Picture the prize crane at your neighborhood pizza joint. Except, instead of a cheap stuffed animal, I am the prize.! Winning !! The other is a rolling hoyer lift. Same premis, but portable around the house.
Next, we have bathroom assistance. Pretty simple. A bidet on the toilet. A couple of shower chairs. Nothing too unusual.
Communication becomes a high priority as speech wanes. Initially, I started using an I pad with Verbally app, which is a text to speech app. I no longer have effective hand use so now use an eyegaze computer. There are several manufacturers out there to choose from. Mine is produced by Talk To Me Technologies. This device has voice generating software and allows me to use a computer, a Microsoft Surface Pro, by tracking the movement of my eyes. Thankfully, I am still able to speak but eventually the device will be necessary. For right now, it is how I bring this content to you !
At some point, breathing and swallowing become issues. For this, have 4 very important devices. The first is a Trilogy ventilator. This machine is the gold standard of non invasive ventilation. It uses any of a variety of masks and provides relief from the effort of breathing. The next is a cough assist machine. Essentially, it forces air into your lungs then sucks it out as you cough. As your respiratory muscles weaken it becomes difficult to have a productive cough. To go along with this is a percussion vest. A vest that inflates with air, connected to a machine that causes the vest to pulsate. This helps to loosen and move lung secretions. Lastly, is a suction machine. Similar to what you would find in a dentist’s office to remove saliva and such when the ability to swallow is lost.
I think that covers most of the basic items that we use. Believe me, this is just scratching the surface. I will touch on some of the many modifications and items I have around my home in a future post. Oh, and yes , I got the word plethora in here !!