Forum Replies Created

Page 1 of 2
  • robert-stump

    Member
    February 1, 2024 at 3:12 pm in reply to: Electrical Stimulation and Speech Therapy

    I don’t know how new that treatment is, because I had something very similar performed on me with a speech therapist about 12 years ago. We were attempting to help me swallow food easier and we tried lots of different foods each time after the electrical stimulation treatment in the office. After doing it for several months I really didn’t feel like it made any difference, but I was forced to discontinue the treatment after biting into one of the harder cookies the therapist was attempting to try, and one of my teeth shattered in the office. After the dental issue was resolved (that is a whole other story), I decided to not continue the EMS treatment due to lack of efficacy. But that does it mean it won’t help you, I think my issues are mostly structural and not strength related, so you might want to pursue it. You certainly shouldn’t have any negative reaction to it, it was slightly uncomfortable at times, but not at all painful or unbearable.

  • robert-stump

    Member
    February 1, 2024 at 2:48 pm in reply to: Any luck finding caregivers?

    Care.com review:

    I recently ended a one year subscription to care.com thinking that it would at least give me a fighting chance to find someone. Nope.

    Biggest problem being that there isn’t a specific category that makes sense to “post” your ad in. Care.com seems to focus on specific groups, mostly Seniors who need care, and Children that need babysitters. Senior caregivers seemed to be the closest category to put my ad in so I tried several different variations over the course of the year. I got lots of responses and “applicants” but most of them did not even bother to read the details I clearly stated on the ads, and were confused when I emailed them to again state the details that were already in my ad. 99% of them demanded compensation that was at least 50% higher than I was offering, but responded to my ad anyway even though I clearly stated the rate of pay I could offer.

    Toward the end of my year I finally discovered the specific category for adults with disabilities looking for caregivers, but it is on the child care side of the website and seems very mismatched with applicants. The very few promising people I was talking to told me specifically that they would never have looked in any listing under the child care side of the website, so I think the whole setup is not really usable for people like us.

    If you do decide to take the plunge and give them a try, only try it for a month and hit it hard, then give up if you don’t get promising leads.

  • robert-stump

    Member
    November 28, 2023 at 3:07 pm in reply to: How do you stay warm in winter?

    Have you ever tried one of the radiant big round disk heaters? They glow very brightly, which is annoying, but they are fabulous at heating just you up and not really the surroundings. They can be positioned 2 feet away or further and you can still really feel the heat coming your direction since they don’t have to blow air on you. They are also more energy efficient and some come with infrared remote controls. My favorite brand discontinued their version, unfortunately, but I loved it because it was on a tall stand so it was just the right height to hit my driving hand while I am sitting at the desk. Here is one that will work on a smart switch: https://www.walmart.com/ip/Auseo-Oscillating-Parabolic-Space-Heater-Timer-14-57Inch-Disc-Diameter-Radiant-Dish-Heater-Carbon-heating-Overheat-Tip-over-protection-Adjustable-The/1186752228?athbdg=L1800

  • robert-stump

    Member
    November 22, 2022 at 7:22 pm in reply to: Styrofoam overload

    There is local Styrofoam recycling in a suburb about 15 miles away from me, they do an annual announcement to the nearby communities that they are available.  I saved up about 10 of my coolers and other random Styrofoam packaging and dropped them off for the first time earlier this year.  I’m just about ready to take another batch.

    However, this place is very particular on having every single little piece of tape removed before handing it off to them, so you may want to check with your recycler before taking your stuff there!

  • robert-stump

    Member
    February 1, 2022 at 3:16 pm in reply to: Finding Love

    51 years old heterosexual cis male here, struggled my entire life with finding a mate. It doesn’t bother me now, but in my late teens and 20s and even into my 30s I was extremely upset about it. Looking back, I believe what held me back was my own shyness and my fixation on un-obtainable individuals. I took rejection so personally and I always blamed it on my disability instead of considering how I could alter my outlook and appearance and behavior toward others. I wasn’t exuding confidence at all, and I realize now how much of a turn off that must have been to others.

    It’s definitely harder now to attract a mate because my disease has progressed to the point where I can’t just go out and meet a stranger on a date because I can’t drive my wheelchair very well, I can’t speak loud enough for even my friends to understand me, and I can’t consume anything while I am out because I will probably choke and need whoever is with me to help me cough. These are difficult obstacles to overcome, perhaps not impossible, but at this late stage of my life I don’t have the energy to try very hard.

    I am talking to a new friend I met on Twitter, we have met a few times at my house but we haven’t attempted to do anything in public yet. I’m nervous to do so, but she seems cool with the entire situation. I believe she already friend-zoned me, so some pressure is off, but as the weather gets better in a few months I’m going to make it a point to spend lots of time with her to see if I can get her to change her mind 🙂

  • robert-stump

    Member
    December 10, 2021 at 3:50 pm in reply to: Coughing Up Phlegm

    Weirdly, I struggle more sitting up nowadays, even though for almost my entire life it has been worse when lying down.  Ever since starting Evrysdi back in September 2020, I struggle coughing up my own phlegm without help, sometimes to the point where it’s dangerous.  But, at the same time, if I lay down and roll to my left side, a cough almost naturally occurs without any effort to bring out, and I have not had a real coughing fit in bed while illness-free ever since.  I almost instinctively want to get in bed now if I’m struggling getting this annoying cough out!

    I’m sorry you are dealing with that, I know it’s miserable.  I would just suggest doing an extra breathing treatment or doing deep breath exercises before lying down, or trying to find another sleeping position while laying down.  I have noticed greatly increased phlegm when I roll too far on my right side.  You might want to also raise the head of the bed if possible.  Have you considered taking some guaifenesin right before bedtime?

  • robert-stump

    Member
    November 9, 2021 at 2:38 pm in reply to: Alfamino Formula (AA Diet)

    Alyssa, no I have never heard of this diet but I was curious if you’ve ever tried Soylent?  It is much lower in sugar than anything else I have found, blends quite smoothly, and seems to have a pretty rounded nutritional portfolio.  The only thing I add is a daily liquid multivitamin, extra vitamin D, extra potassium, and extra non-soluble fiber.  I’m pretty much living on that nowadays for all of my nutritional needs (~900 cal/day).  For the first week or 2 my stomach was unsure what to make of it, but it quickly settled down and everything is back to normal and I feel like I’m getting way more nutrition and calories.  I still eat the occasional puréed or food blended in a magic bullet, or really soft soups or whatever, but I would say 85% of my other intake is Soylent.  I find it very tasty, especially the Chai and the Vanilla premade bottles, but to save money I usually just use the powder and mix it myself.

  • robert-stump

    Member
    October 22, 2021 at 2:36 pm in reply to: Anyone have a Google Pixel?

    I don’t have one, but I try to keep up-to-date on the new features they build into these things (some of which eventually trickle down to other android phones). Here are the newest features I know about:

    ‘Assistant voice typing’ in Gboard lets you dictate, edit text hands-free
    https://wp.me/p9SZ9T-1VR4

    ‘Quick phrases,’ enhances At a Glance on Pixel 6
    https://wp.me/p9SZ9T-1VYB

  • robert-stump

    Member
    October 7, 2021 at 5:33 pm in reply to: Talking On the Phone

    I second Blake’s observation about a good quality PC microphone to make telephone calls. With Skype able to call landline numbers and Google Voice making PC calls to regular telephone numbers as well, I usually wait until I can call from my PC if the telephone call is important.

    Otherwise, I may just have one of my aides make the call for me and speak for me. I feel much better with that option in most settings anymore since my voice is so hard to understand now. Good thing my voice software can still halfway interpret what I’m saying most days, which is why I usually try to do an online chat or email if it is remotely possible to do so 🙂

  • robert-stump

    Member
    September 17, 2021 at 9:54 pm in reply to: Hand Falling Off Joystick

    I use one of those micro joysticks with an index finger with my palm resting on a hard flat shaped pad, and yes it is very difficult to keep it just in the right place when going over any bumps in the roadway. It is frustrating.

    To fix this problem correctly, one day I plan to put some really deep grooves into my pad so my hand sits down into it and really can’t move once it is there, but I haven’t taken the time or effort to figure out how to do that. So, in the meantime when I am out and about I put a 4″ wide strap over my entire hand and fasten it down on either side of my pad using Velcro. If I have it tight enough, my hand is prevented from sliding side to side and does a much better job of keeping my finger in the right place. Unfortunately, it can still slide forward and back with some terribly aggressive bumps or hills I go over, but it’s better than nothing! It also keeps the random stranger from trying to shake my right hand since it isn’t easily accessible for them to find!

  • robert-stump

    Member
    July 30, 2021 at 10:08 pm in reply to: Update on New Wheelchair

    My Invacare chair is way too tall for most restaurant tables, and since I rely on others to feed me it always seems like they have to reach so far up to get to my mouth it’s ridiculous.  So, I actually like sitting at the bar height tables and raise my chair up with the elevator so my head is at the same height as everyone else’s 🙂

  • robert-stump

    Member
    May 15, 2021 at 2:49 pm in reply to: Advice On Self-love?

    Not the discussion I was expecting after reading the title, but a good one nonetheless.  🙂  For me, I feel it’s just honestly.  We each have our own hangups about how other people look, so it’s understandable that we know deep down that others looking at us probably feel a certain type of way.  But, we can’t know what is in their heart, but we can project and assume that they are looking at us negatively.  I’m as bad as anyone else thinking that my body is undesirable, but at the end of the day there are too many things we can’t change so it’s hardly worth worrying about.  I try not to look in the mirror too much (except when I’m naked, heehee), but I just try to remember that each of us is unique, and there is no earthly reason to assume that all 6,000,000,000 of the other humans on this planet care all that much about how I look.  For instance, I’m always anxious trying to get into a swimming pool or hot tub in public feeling that I have to bear so much of my body in a very awkward way to complete strangers.  But, not once was I ever truly embarrassed, ashamed, put down, or tormented in any way during or after the experience, and any interaction I have with strangers during those times are always uplifting, beneficial, and very kind.

  • robert-stump

    Member
    April 27, 2021 at 2:04 pm in reply to: Columnist Writes About Second Vaccine Shot

    Oh yes, Pfizer #2 got me good.  Down for the count for 48 hours, fever, nausea, very intense headache (and I almost never get headaches that last more than the morning Cup of Joe), and weakness.  But, I’m glad I did it, and I feel so safe being around strangers again.  I still mask up indoors in public like a good comrade, and I might do so for the rest of my days actually (especially in the winter times in the height of the flu season) because it does make me feel safer.  I just hate getting sick with anything because of how intense it can get, still I’m just glad COVID-19 is one fewer thing I have to fear in the days ahead, and yes even with the 2nd shot side effects I’m still willing to get the 3rd shot if the new variants cause too much havoc and start leaking through the standard 2 dose Pfizer vaccination.

  • robert-stump

    Member
    March 23, 2021 at 3:29 pm in reply to: Columnist Writes About Throwing Away Her Vaccine Shot

    My 2nd dose of Pfizer was delayed because I felt like I was coming down with something on the day I was originally scheduled for, but it was an easy process to reschedule it and I took it this past Saturday.  It hurt some, the first one didn’t, and my arm was sore after 5 or 6 hours.  But the next day, about 20 hours after the shot, the side effects hit me hard.  One of the worst headaches I have ever experienced, and a fever of 101.7.  Nauseous, and random pain through the rest of that day and night, then about 28 hours after the side effects started, they subsided and I was exhausted from the ordeal.  I did not expect that at all, and in my mind I was secretly making fun of all those people complaining about 2nd shot side effects!  Karma I guess!

  • robert-stump

    Member
    March 11, 2021 at 5:32 pm in reply to: Multivitamin Recommendations

    Because my diet is pretty limited, I started taking a multivitamin about 15 months ago, and now I am doing daily vitamin D supplementation as well.  I have to admit I do feel better after having started taking both of them daily, and when I tried to stop I noticed a drop off in energy and excitement for life.  So, I guess now I am stuck!

    Due to my swallowing issues, and even chewing issues, I stick with liquid only.  I rarely have G.I. issues, so I didn’t expect these to cause me any issues, and they haven’t whatsoever, but your mileage may vary.

    Tropical Oasis Adult Liquid Multivitamin
    Wellesse Vitamin D3

  • robert-stump

    Member
    February 5, 2021 at 2:47 pm in reply to: Social Media Follow Thread

    I am @ophir6 everywhere, most active on Twitter and occasionally on Facebook!

  • robert-stump

    Member
    January 29, 2021 at 1:54 pm in reply to: Vaccine?

    Ohio is putting us further back in line.  Earliest that I MIGHT be able to try to get one will be 2nd week of February, and I’m frustrated.

  • robert-stump

    Member
    January 13, 2021 at 8:17 am in reply to: Adaptive Sports

    Bowling is pretty easy to adapt, using just one of those stationary rails or getting one that can attach to your wheelchair.  The off-the-shelf design of the Ikan Bowler comes to mind, or you can do what I did and hire a local welder to create your own.  I have been bowling competitively in a standard weekly league for over 20 years, and my highest average was close to 169 for the year.  My highest game to date is 254!

    I tried out power soccer once but I don’t have the dexterity in my driving hand any longer to be any benefit to any team anywhere.  I wish I would have been able to partake in that sport during my teenage and twenties portion of my life, I would have ruled!

    I know there is adaptive curling, and some other weird sport played in a gym with ramps and balls with a similar theme (I forget the name), so there are options nowadays.  I am super competitive so I definitely would have enjoyed some of these new options if only I was younger!  Unfortunately for me the only team sport I got competitive with in my teenage years was wheelchair square dancing.  It was cool, and it definitely became a pride thing as I knew I could drive better than anyone else there, but it was all exhibition because we were the only group of wheelchair square dancers around!  Fun times!

  • robert-stump

    Member
    January 12, 2021 at 10:57 pm in reply to: Adaptive Sports

    With enough ingenuity, many other sports can be adapted.  I’ve always had dreams about making a device to allow me to play billiards.  I have no doubt someone could easily design a variably powered shooting stick attached to a wheelchair (preferably one that can elevate).  Likewise, I remember playing a version of HORSE with my brother and dad.  Of course I wasn’t able to throw the basketball, but I was able to roll it from the same spot and try to hit the tiny post holding the rim.

  • robert-stump

    Member
    December 10, 2020 at 3:03 pm in reply to: Electronic Visit Verification

    We have had it here in Ohio for most providers for over 2 years.  It is a pain, and seems like one more unnecessary step to discourage workers from entering this field.  I pretty much manage the billing for all of my providers anyway to keep them happy and free of the nonsense, so helping each of them set up EVV and helping manage everything for them in that regard is just one more thing I need to do besides trying to stay alive and COVID free.

    Just take your time and learn everything you can about it and don’t stress about implementing it right when you first start using it.  There is a learning curve to it and here in Ohio providers had 6 months at least to try it out before it even made a difference in official reporting for billing purposes.  Even now Ohio is just starting to dip their toes into matching it up with billing, so it’s obvious that everyone from the top down understands that this is a major shift in how we do things and are trying to give people lots of time and practice to get it right before it counts.

    Of course, in an ideal world this EVV crap would go away, but it just sounded too perfect of an answer for “fraudulent Medicare/Medicaid billings” fear that have been completely overblown when it comes to the lowly homecare worker.  Some sneaky congressmen and senators tucked it away in some barely understood legislation at the end of Obama’s last term, and no one knew the significance of it until states were grappling with the requirement to implement it.  This would’ve been one of those times when it would have been better for the government to NOT have worked to pass the bill.

  • robert-stump

    Member
    December 4, 2020 at 7:35 pm in reply to: Voice Access on Android 11

    Actually, even better news.  Google went ahead and released this new functionality for any phone running Android 6 and above.  It won’t work as smoothly on older hardware, but I just tried it out on my Moto X4 running android 8 and it looks like all of the functionality is there.  Of course, my voice isn’t near as clear as it needs to be to make this completely usable, but I was able to browse around on Twitter without touching my phone at all.  I like it!

    You can download Voice Access on the Google Play Store now, though you might need to enable beta testing to get the newest functionality.  To enable it, open the Google Play app and Tap (help) Help & feedback in the top right corner of the screen. Tap (more_vert) More in the top right corner of the screen, then select View in Google Play Store. Scroll down to the Become a beta tester section, then tap I’m In.

  • robert-stump

    Member
    December 4, 2020 at 7:05 pm in reply to: World of Switches

    DeAnn, that is the Micro Light Switch, one of the most sensitive switches out there.  I love those things!

  • robert-stump

    Member
    December 2, 2020 at 1:46 pm in reply to: COVID Vaccine

    Sign me up, I can’t wait.  I even already asked my neurologist if there is any way to get on top of the list when it becomes available 🙂

  • robert-stump

    Member
    November 20, 2020 at 3:30 pm in reply to: Awaiting Test Results

    Wow, I hope you are negative and that you and your mom remain safe and well.  It seems like it is everywhere now and I have had several scares with my providers.  My main aide was definitely exposed a few weeks back because both her sister and her 2 nephews tested positive, and she was around them constantly without taking any precautions with them.  The timing worked out perfectly for me, however because she was already scheduled off for 6 days due to a planned trip with her family to Florida (which was canceled because of all this).  She got tested twice, both times negative, and came back to work and we’ve been good since.  That has been the closest call I have had so far, but I’m really worried about these next few weeks.  Unfortunately, I don’t really have a good game plan because my parents can’t physically take care of me anymore and I am so short on help as it is.

Page 1 of 2