Jim Knepp

I was diagnosed in April 2014, and Joanne (my Wife) is my caregiver. We have a SureHands ceiling lift  (electric, controlled by a fob) that we use to transfer me from my chair into bed at night, and from the bed to my chair in the morning. We also have a SureHands ceiling lift in the toilet area of our master bath, but I don’t use that yet as I…[Read more]

Len Jax: I thought that I had written your first paragraph, because it describes my situation perfectly.

When Joanne (my Wife) and I are alone, we tend to go out to eat at off hours – late lunches or early dinners – in order to avoid crowds. When we go out with friends, they are most often the same group of people. Larry will sit next to me and…[Read more]

@Angel Hernandez

I am a member of an ALS Support Group that has members from the Orlando area. We had in-person meetings in Daytona Beach, and have been having Zoom meetings since March 2020: we “meet” on the 3rd Wednesday of every month beginning at 1 pm. Below is the information for our coordinator:

Marixa Salgado, MSW

Co-Director Care…[Read more]

I have a Raz tilting shower chair with the commode feature: it is expensive, but it also easy to roll, easy to tilt, easy to keep clean, comfortable, and very durable.

I was diagnosed with Primary Lateral Sclerosis (PLS) in February of 2009: the PLS diagnosis was confirmed by the Indiana University Medical School, Indianapolis, Indiana, and the Mayo Clinic, Rochester, Minnesota (3 visits). In January of 2012, my medical care was transferred to the Les Turner Clinic at Northwestern Hospital, Chicago, Illinois. My…[Read more]

@Lori: We live in a single story home. In addition to the modified rail system that I referred to in my December 9 post, we have had most of our house modified to be handicapped accessible – wheelchair accessible bathroom (roll-in shower, roll-in toilet area, handicap sink, etc.); 36 inch doors; pwc-friendly tile flooring; no-sill entryways for…[Read more]

We have a modified overhead rail system: a SureHands ceiling lift in the toilet area of our bathroom and another in our bedroom.

I still have minimal use of my legs: I can walk/shuffle maybe 10 to 15 feet with a death grip on a walker. I have used the toilet lift twice (I had a skin graft on a chronic ankle wound and didn’t want to put weight on…[Read more]

I am not sure that it is responsive to the issue, but I have a SureHands ceiling lift which I have used when my legs are too weak to transfer: my Wife puts a sling around my chest and legs and the ceiling lift moves me from my pwc to the toilet and back.

I was diagnosed with Primary Lateral Sclerosis (PLS) in February of 2010 by a Neurologist in South Bend, Indiana. My PLS diagnosis was confirmed by the Indiana University School of Medicine, Indianapolis, Indiana, and during 3 visits to the Mayo Clinic, Rochester, Minnesota. My care was transferred to the Northwestern Hospital PLS/ALS Clinic,…[Read more]

I was an elder lawyer for 37 years before ALS forced me to retire 2 years earlier than I planned, so I had a lot of experience talking to people about end of life decisions – and I have followed my own advice. Please remember that I am no longer a lawyer, having voluntarily surrendered my license in 2016. My first piece of advice – as a layman -…[Read more]

I’ve read SPY OF THE FIRST PERSON, by Sam Shephard, but didn’t like it – probably too deep for me.

Some of the other books that I have read: all are available on Amazon.

ALS: AN ORIENTATION, by Eliot H. Dunsky, MD
A retired physician’s journey with ALS.
It is self-published, not professionally edited, nor a best seller, but Dr. Dunsky has made a…[Read more]

Steve K. I agree that Tobii as an entity does not have good user support. However, my Tobii “salesman” has gone out of his way to help me. You may want to look on You Tube for videos by Chris Kovach. And no, I don’t get a kick back other than the satisfaction of hopefully helping another pALS.

Pepper – Like Dagmar, I also have a TobiiDynavox. I was very enthusiastic about it when I first received it, but the novelty ran out after about 6 months and it now just occupies space. I am still able to use my hands to type – OK, 1 or 2 fingers on each hand – and my speech pathologist suggested some apps for my iPad: I tried them and that they…[Read more]

Please have someone show you how to use the Hoyer lift. I was an elder lawyer for 2 weeks shy of 40 years when our common disease forced me to retire. I saw many instances where the caregiver spouse harmed him or herself taking care of the invalid spouse. I had a simple question that I would ask. Who is going to take care of Nina when Nina’s…[Read more]

John:

I, like you, am a vet with ALs. You do not mention it in your post as to whether you have reached out to a service organization to help you in your dispute with the VA. If you have not, I would suggest that you contact the nearest office of the Paralyzed Veterans of America (PVA). I was diagnosed at the Northwestern Hospital ALS Clinic,…[Read more]

My Wife is normally with me – as a retired RN she knows my medical condition better than I do. I can no longer talk, so I always have my iPad with me so that I can use my “Speech Assistant AAC” app to communicate; my iPad also has the “ALS Key Medical Information” app. I also have a laminated ALS information card with the name of my Health Care…[Read more]

When I was first diagnosed in April of 2014, I was treated at the Indianapolis VA ALS Clinic and loved it.  I went every 3 months, sat in a room for 6 hours, and the providers came to me.  My Wife (a retired RN) was really pleased with my care and the ease of scheduling.  We moved to Florida 18 months after my diagnosis.  I am now treated at the…[Read more]

I have an IPad and have been using Speech Assistant AAC for about 2 or 3 years:  cost of less than $12.00 in the app store, upgrades have been free thus far.  It is a poor substitute for being able to talk, but it is the best IPad AAC that I have found.

All are available on Amazon.

ALS: AN ORIENTATION, by Eliot H. Dunsky, MD
A retired physician’s journey with ALS.
It is self-published, not professionally edited, nor a best seller, but Dr. Dunsky has made an effort to do something for other PALS. I have read it and, despite its shortfalls (my opinion only), I would recommend it to PALS, CALS, a…[Read more]

A friend of mine (he is also a pALS) says:  “If breast cancer, prostate or AIDS victims went 75 years with no treatment or cure, there would be anarchy. … Unlike other diseases, there are no survivors. ALS always wins. So we don’t have survivors to campaign for funds and cures.”