Ventilator

Ventilator and my Caregivers

In March 2022 I had to go to emergency room because I could not breathe and the doctor performed a tracheostomy. Three years and six months after I was diagnosed. I've been back to icu two times since for pneumonia because I have been so immobile. I've been in bed since my tracheostomy because I need to get my chair fitted to handle the additional equipment. Since my surgery, it has been really hard on me and my caregivers. The Ventilator I'm on sounds alarms, sometimes for no reason, so you can imagine how frustrating that is for my caregivers. I've been in respiratory

by Joe
Travel

Traveling with ALS

Even though traveling by air with a power wheelchair can be intimidating, a little preparation goes a long way. As you explore specific airlines, we recommend speaking directly to the agents to explain your traveling needs and express any questions you may have. You may also find  the resources on www.wheelchairtravel.org helpful. Their website offers a wealth of travel related resources including tips for airline travel. As you may already know, power wheelchairs cannot be taken into the cabin of an airplane and must be safely stowed. So plan on

by Joe
Mobility

Being mobile with ALS

I never realized how much my military service would end up helping so many years later. I didn't retire from service, I spent four great years in the Army. So I count my blessings, even though I have ALS, because we have help from the Veterans Administration which provides much of what we need to manage this disease. From prescriptions to nontaxable income, from providing a power chair to giving help with buying a vehicle for chair. I was diagnosed September 2018 and by early 2019 I was using a walker. It allowed me to move around safely for a while and then in August I

by Joe
speaking, voice banking

Speaking through a computer with ALS and Voice Banking

I want to go over voice banking first. Voice banking is recording your voice before you lose the ability to speak. I didn't do this, I kept putting it off thinking I had time to do it later. I regret procrastinating to this day so please don't be like me and do it for yourself and your family. The VA provides the recording device so I was told you need to record for about 15 hours or so then it will be synchronized with eye tracking software. I've never been an early adopter when it comes to technology. I've worked with many who are and it always intrigued me. So my ass

by Joe
Eating, Drinking

Eating and Drinking with ALS

Eating and drinking is another area that becomes more and more challenging as time goes on. Julie has been very helpful here. As my fingers lost agility, Julie would find products to allow me to be independent longer. Items like large handled utensils and bowls built into a place mat with a lip to help with scooping. As my hand strength wavered and could no longer pick up a cup, Mark helped me with different versions of holders. He found a great cup holder which clamped to my chair and worked great. Eventually I was no longer able to use a straw so we found automatic cups

by Joe
Bathroom

Bathroom Use with ALS

One of the most disruptive issues to our daily routine became bathroom trips. The more strength I lost, the more disruptive it was. When I was still using a walker it was very little problem. My wife and I would use family bathrooms when out and about. Once I was in the power chair, complexity was added. Early on I was able to lift myself, with the help of my wife Julie, from the chair to the toilet. Once I lost that strength then a gait belt had to be used. Julie is unable to lift me so my brother Mark helps with that. Imagine the limitations once a gait belt is needed

by Joe