Jim Knepp
Forum Replies Created
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I often remind myself (or Joanne, my Wife, does it for me) – my attitude is the difference between an ordeal and an adventure.
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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 can “walk” (really shuffle behind a walker for 4 feet or so) from my chair to our raised toilet (a handicapped toilet on a toilator base) while Joanne steadies me with a gait belt.
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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 cut my food (he did that when his 6 kids were young [they are now in their 40’s and 50’s]) so Joanne has a chance to talk with others without having to tend to me. And I too am almost always the last to finish. We also tend to tip extra for the mess I make.
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@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 Services
Regional Program Director for East Central Florida
813-637-9000 x 109
305-697-3482
toll free: 888-257-1717 x109
fax: 813-637-9010
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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.
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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 medical bills were paid by insurance provided by Joanne’s (my Wife) employer, and we paid the premiums and deductibles. In September of 2013, I applied to the VA for assistance with my prescriptions, and was denied because we made too much money. In December of 2013, I began the full-time use of a manual wheelchair paid for by insurance.
On April 23, 2014, my Northwestern Clinic MD changed my diagnosis to upper motor neuron, slow progression Amyotrophic Lateral Sclerosis (ALS). The Clinic Coordinator said that I would need to get a power wheelchair, but that private insurance and Medicare would only provide a new wheelchair every 5 years. Then the Clinic Coordinator said, “However, if you were a veteran” – and I stopped her and said that I was. She told us that my care would be transferred to the Veterans Administration (VA), and that the VA would contact me. Knowing that I would be dealing with the government, I expected to wait a long time to hear from the VA.
Seven days after my ALS diagnosis I was contacted by the Paralyzed Veterans of America (PVA): the PVA enrolled me in the VA, and 2 weeks later I had my 1st appointment at the Indianapolis VA ALS Clinic.
Joanne and I were both blown-away when we were told of the VA benefits during that first ALS Clinic visit – a 100% service connected disability rating; a pension; free lifetime medical care for me; medical insurance for Joanne; financial assistance to purchase a handicap van; financial assistance to modify our home; etc. The VA sometimes gets a bad rap for its medical care, but I have received nothing but excellent, compassionate care during the 7 plus years that I have been treated by the VA, first at Indianapolis, Indiana, and for the last 5 1/2 years at Gainesville, Florida – and Joanne (an operating room RN for almost 35 years [now retired]) agrees.
Little did I know when I enlisted in the USAF in January of 1967 as a 19 year old that the US Government would be responsible for a disease I would be diagnosed with 47 plus years later.
I belong to 2 ALS Support Groups and I try not to discuss my VA benefits with others in the Groups because the VA provides me medical care and benefits as a right while non-veteran pALS are not as blessed.
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@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 the front door and access to our lanai; pool-lift; whole-house generator; etc. We deliberately decided to leave 2 guest bedrooms and our guest bathroom as-is (not handicap friendly).
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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 the foot for a few days). It worked well to transfer me from my pwc and back.
We have been using the bedroom ceiling lift for about 18 months. I drive my pwc under the lift, my Wife puts a sling on me, the lift takes me from my chair into bed, we take off the sling, I sleep, and we reverse the process in the morning to get me into my chair.
The difference between a Hoyer lift and a ceiling lift to me is the difference between a manual and an automatic transmission on a car. With the Hoyer you have to use a sling, lift the pALS manually (or with an electric motor), and man-handle the lift – now weighted down with the pALS – into the proper position. With the ceiling lift the positioning has been done for you: our ceiling lift takes me from the my pwc to bed and back with no effort on my Wife’s part (other than putting on and taking off the sling) with the push of a button.
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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.
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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, Chicago, Illinois. On April 22, 2014, my diagnosis was changed to upper motor neuron, slow progressions ALS, and my care was transferred to the ALS Clinic at the Indianapolis, Indiana, VA Hospital. At the present time, I am being treated at the ALS Clinic at the Gainesville, Florida, VA Hospital.
To the best of my knowledge, I have no family history of motor neuron diseases.
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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 – would be to talk to an elder lawyer. Don’t go on-line and be your own lawyer and don’t pick an elder lawyer blindly from the telephone book or tv ads. Talk to your family, friends, or someone from your ALS Association to get a recommendation.
Each situation is unique – one size does not fit all.
My Wife and I have a Will, Trust, Appointment of Health Care Representative, a Living Will, and Funeral Directives. I also have a ALS Respiratory Information for EMT’s, a Health Care Directive for an Individual with ALS (including a VSED provision [voluntary stop eating and drinking provision]), and a DNR.
I want to emphasize again – I am no longer a lawyer so I am not saying that you should have these documents. I am simply saying that my Wife and I have these documents because they are what we believe to be appropriate for us.
My Wife is my designated Health Care Representative. I have 2 adult Daughters, but I have designated (1st) a friend of almost 20 years and (2nd) another friend of almost 30 years as successors to my Wife. I have written a letter – in non-legal and non-medical terms – giving guidance to my Wife and her successors of what I would like them to do if I cannot make medical decisions for myself. I had a mentor when I was a young lawyer: my mentor was a very good lawyer and a better person than most. He told me that the toughest decision that an individual may have to make is an end-of-life decision for another person. I have included in my “instruction letter” to my Wife and her successors a clear statement that they are not making an end-of-life decision for me, but simply expressing my end-of-life decision should I be unable to speak for myself.
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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 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, and anyone interested in our common disease. The chapters are short, subject specific (i.e., sitting issues, exercise, etc.), and each chapter is followed by references to web sites for additional information.BLITZ YOUR LIFE: Stories from an NFL and ALS Warrior, by Tim Shaw
An NFL Linebacker’s journey with ALS.ROWING WITHOUT OARS; a Memoir of Living and Dying, by Ulla-Carin Lindquist
A Swedish broadcaster’s journey with ALS.
BEAUTIFUL BATTLEFIELDS, by Pastor Bo Sterns
A Minister resorts to the Bible when her Husband is diagnosed with ALS.TUESDAYS WITH MORRIE: An Old Man, a Young Man, and Life’s Greatest Lesson, by Mitch Albom
I read it when it first came out in 1997. Then it was just a best-seller about a sports writer talking to an old man who had this weird disease (ALS). I have read it twice since my diagnosis. Now it has much more meaning.
Also, see the interviews that Ted Koppel did with Morrie on U-Tube.HEAVY: Finding Meaning after a Terminal Diagnosis, A Young Family’s First Year with ALS, by Kristin and Todd Neva
At first I was turned off by the tone of the book: but then I realized that this was their story, not mine. An interesting perspective by a pALS (Todd) and a cALS (Kristin). -
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 were too expensive or clumsy. I am not sure how I found Speech Assistant AAC (less than $12.00 in the Apple app store), but I have been using it for about 2 years. It is relatively easy to navigate, flexible, has a talking feature (which I don’t use as all of the voices [in my opinion] sound like a machine), has a screen view with large letters that the person that I’m “talking” to can easily read, and really “predicts” the next word well which saves typing. I showed it to my speech pathologist, and now it is #1 on her recommendation list.
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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 Husband injures or kills himself while taking care of Nina. We have and use, when appropriate, a transfer belt and Hoyer lift. We also have a ceiling mounted SureHands lift which transfers me to and from our bed to and from my power wheelchair.
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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, Chicago, Illinois, on April 23, 2014. I had no knowledge of he VA benefits for vets with ALS. Northwestern sent my records to the Indianapolis VA Hospital (we lived in South Bend, Indiana, at the time). The PVA received notification somehow, and I was fully enrolled in the VBA system by May 1, 2014. We moved to Florida in July of 2015, and the PVA transferred my case to their Gainesville Office. I contact my PVA Service Officer whenever I have an issue with the VA, and wait for the resolution. Again, don’t argue with the VA – just contact the PVA.
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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 Representatives and their phone numbers in the man purse attached to my pwc. Also in the man purse is a plastic, credit card sized card which contains copies of my Health Care Directives with contact information and a USB which can be plugged into a computer.
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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 Gainesville VA, which does not have an ALS Clinic (although they are trying to get a Clinic started). Being in a non-Clinic setting, I have to set individual appointments with the Neurologist, Pulmonologist, PT, etc. The care is very good (per my Wife), but the scheduling is a real pain. We have discussed going to Tampa (4 1/2 hour drive) to get back in a Clinic.
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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.
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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, and anyone interested in our common disease. The chapters are short, subject specific (i.e., sitting issues, exercise, etc.), and each chapter is followed by references to web sites for additional information.BLITZ YOUR LIFE: Stories From An NFL And ALS Warrior, by Tim Shaw
An NFL Linebacker’s journey with ALS.
My favorite passage: or me, it’s not the death part that I don’t want to deal with. I don’t want to deal with the process of getting there.ROWING WITHOUT OARS; a Memoir of Living and Dying, by Ulla-Carin Lindquist
A Swedish broadcaster’s journey with ALS.
My favorite passage: I am going to die of ALS, if nothing unpredictable happens. There are two roads I can take. One is to lie down, be bitter and wait. The other is to make something worthwhile of the unfortunate. See it in a positive light, however banal that sounds. My road is the second. I have to live in the immediate present. There is no bright future for me. But there is a bright present. Children live like this. Only for the present. Nothing coming afterwards. Therefore I laugh like a child. Uncontrollably. The whole of my adult life I have thought, it will be all right in the end. I have to do this first, then it will be all right. But this way of thinking is no longer possible. The strange thing is that nowadays, when I am terminally ill, I feel moments of great joy, such as I have hardly ever felt before. Happiness has never been a constant for me, but now it is becoming one. That is why I laugh. And if it has anything to do with bulbar paralysis, then it is a blessing that comes with ALS.BEAUTIFUL BATTLEFIELDS, by Pastor Bo Sterns
A Minister resorts to the Bible when her Husband is diagnosed with ALS.
My favorite passage: No, I didn’t earn His grace yesterday. Or the day before that. Or ever. Grace is free. Love is undeserved. And while I know God loves us on the days when we try hard to get it right, I think He’s also quite fond of us on the days when we know we’ll never get it right.TUESDAYS WITH MORRIE: An Old Man, a Young Man, and Life’s Greatest Lesson, by Mitch Albom
I read it when it first came out in 1997. Then it was just a best-seller about a sports writer talking to an old man who had this weird disease (ALS). I have read it twice since my diagnosis. Now it has much more meaning.
Also, see the interviews that Ted Koppel did with Morrie on U-Tube.SPY OF THE FIRST PERSON, by Sam Shepard
The award winning actor, author, and playwright’s journey with ALS.
I read it, but don’t recommend it. -
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.”
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The following is my short biography: “In February of 2010 I was diagnosed with Primary Lateral Sclerosis: there is a debate in the medical community whether PLS is a separate disease or only a precursor to Amyotrophic Lateral Sclerosis. My official ALS diagnosis date is April 23, 2014. Little did I know that when I enlisted in the USAF in January of 1967 as a 19 year old college flunk-out that the US Government would be “responsible” for a disease that I would be diagnosed with more than 47 years later.”
Because I served in the USAF from January 1967 through January 1971, my ALS is considered a service connected disability, I was automatically admitted to the VA health system, and all of my medical expenses (doctors, prescription, durable medical equipment, etc.) are covered by the VA.
I am a person who believes that healthcare is a right and not a privilege. The juxtaposition between the candidates and parties as to who wanted to expand healthcare vs who wanted to restrict/deny healthcare was an important factor to me.
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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.