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Jim Knepp

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@jimknepp

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    Jim Knepp replied to the topic Questions about transferring a patient – – is Hoyer lift the only option? in the forum Living With ALS 4 weeks ago

    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]

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    Jim Knepp replied to the topic Do you change your eating habits when you’re out in public? in the forum Living With ALS 4 months, 1 week ago

    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]

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    Jim Knepp replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 7 months, 2 weeks ago

    @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]

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    Jim Knepp replied to the topic Recommendations for tilting shower chairs in the forum Mobility Aides, Assistive Technology and Medical Equipment 7 months, 4 weeks ago

    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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    Jim Knepp replied to the topic Military Veterans in the forum Living With ALS 1 year, 2 months ago

    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]

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    Jim Knepp replied to the topic Modifying your Home in the forum Living With ALS 1 year, 3 months ago

    @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]

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    Jim Knepp replied to the topic Modifying your Home in the forum Living With ALS 1 year, 3 months ago

    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]

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    Jim Knepp replied to the topic Personal care – toilet transfer in the forum Using our Forums 1 year, 6 months ago

    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.

  • Profile picture of Jim Knepp

    Jim Knepp replied to the topic Why is ALS so difficult to diagnosis? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 6 months ago

    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]

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    Jim Knepp replied to the topic End of Life Topics in the forum Living With ALS 1 year, 7 months ago

    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]

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    Jim Knepp replied to the topic Sam Shepard Book in the forum ALS In The Media 1 year, 7 months ago

    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]

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    Jim Knepp replied to the topic artificial voice/speech equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 8 months ago

    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.

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    Jim Knepp replied to the topic artificial voice/speech equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 8 months ago

    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]

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    Jim Knepp replied to the topic Help with difficult transfers in the forum Living With ALS 1 year, 9 months ago

    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]

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    Jim Knepp replied to the topic ALS Awareness Month 2021 Member Spotlight: John Sprague in the forum ALS Awareness Month 1 year, 10 months ago

    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]

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    Jim Knepp replied to the topic How do you prepare for the “not so ordinary” emergency? in the forum Living With ALS 1 year, 11 months ago

    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]

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    Jim Knepp replied to the topic ALS Clinics — Why Do You or Why Don't You Participate? in the forum Living With ALS 2 years, 1 month ago

    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]

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    Jim Knepp replied to the topic Text to Talk Apps in the forum Living With ALS 2 years, 1 month ago

    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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    Jim Knepp replied to the topic Book recommendations in the forum Living With ALS 2 years, 3 months ago

    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]

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    Jim Knepp replied to the topic No cure for ALS in sight in the forum Living With ALS 2 years, 3 months ago

    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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