Benjamin Hofmeister
Forum Replies Created
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This isn’t an endorsement per se, but I also use Marriott regularly. Mainly because I’m a member and get points, but also because they are pretty consistent about accessibility.
If I’m driving, or really being driven, I like to take my own shower/ toilet chair. Then it doesn’t really matter how their handicapped accessible toilet or shower is set up.
For showers, I’ve learned to specify that I need a roll-in shower as opposed to a bathtub with grab bars. Accessible means different things for different people, so I’ve learned to ask very specific questions.
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😆 take it easy with the pee puns. I’m certainly not too mature to laugh at them, but when my bladder is full, laughter is not the best medicine.
I’ve heard of the pure Wick system for men but haven’t tried it. I know a couple guys who tried condom catheters in the past with mixed results. There seemed to be a problem with getting it tight enough not to leak, but not too tight for comfort. I get the majority of my care through the Veterans Affairs Hospital and I’ll have to see if they will supply that when the time comes.
Right now, I can still use a bedside urinal and even carry one in the car, but as I’m losing dexterity in my hands, this option probably won’t last forever.
Thank you so much for sharing! I read an interview with a veteran where someone asked him why vets don’t like to discuss their time in the war. He told the interviewer that it’s not that they mind, they just mainly wanted to discuss it with other veterans. He went on to compare it to asking someone at a retirement home if they had ever wet themselves. They may have. They may not even be ashamed, or embarrassed, but they probably only want to talk about it with others who had wet themselves too.
Thanks for being the MS vet willing to talk about it.
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I know this discussion is a little older, but I had to reply since I just got a 3D printed goal post style joystick topper for my outdoor chair and used it with great success at the beach. If you’re unfamiliar with the goal post style, that’s the ones that have a u-shape and allow your hand to rest on them Palm down. I have a version of one that I use on my regular wheelchair and it has worked great.
Not mine, but you get the idea.
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Mine doesn’t have the fancy light, but otherwise this is my traveling bed rail.
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Hi John! Don’t worry, I think we all had some trouble figuring out how to make our first posts. I know I did and there’s still a lot I have to figure out.<div>
It’s funny, I’ve always sneered at the idea of taking a cruise, but now that is the most attractive and accommodating option for me. I haven’t flown with my wheelchair yet, but it’s coming and I dread it. I’ve gotten to the point where I cannot reliably transfer myself and being transferred to a seat on an airplane is daunting. Not to mention all the stories about Airlines causing damage to wheelchairs Etc. My Hope Is that in the near future, I can fly in my chair, but I’m still waiting on that.
As to your question, it’s a moot point for me since I can’t travel alone anymore, but something that I found to be very helpful with or without someone to assist me is a portable bed rail/ transfer handle. Even in my state it gives me the security of something sturdy to hold on to, or to pull up on when I’m transferring into my wheelchair, or from the chair to the bed.
That said, if my wheelchair did not elevate so that I can match my seat to the bed height, I’m not sure how I would transfer. Most rooms that are labeled accessible have varying bed heights that unless I was able to stand up from a normal height wheelchair, I’m not sure how they expect anyone to transfer. Using the bed rail and a slide board to scoot myself into bed is one thing. Trying to do it from a wheelchair that can’t match the bed height would be impossible for me to do alone and very difficult for someone assisting me since they would almost have to pick me up.
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Hi John and welcome to the Forum! I’m going to move this to the living with MS subforum, mostly so everyone else can see it too because it’s a good question.
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The idealist in me still gets a little excited about positive results in an animal study, but the realist in me tells me that those results May not pan out in human studies and that even if they do it will be a decade or more before results are seen.
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I wonder if my struggles with cognitive issues feel extra difficult because it often feels like my mind is the only thing I have left that is fully functional? When I was first diagnosed, I had a bad limp and I thought well this isn’t so bad. As long as my hands and eyes are unaffected, I’ll be just fine. Unfortunately, MS ended up affecting them both and I think I tell myself now that as long as it doesn’t affect my ability to think and reason then I’ll be okay.
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My yearly MRIS have shown no new lesions and no enhancing lesions since 2018 at least. I’ve asked my neurologist to clarify what exactly stable means since in 2018 I was driving myself to appointments and walking in under my own power and since then I’ve continued to get worse.
His explanation is that while the disease process is stable, the disability process is not and continues to progress as the white spots on my MRI eventually turn into black holes as the neurons, with no way to heal/remilinate,, die off.
That’s some real cheery stuff right there.
But I suppose all is not lost. Advances are being made everyday and I expect there will be a remyelination therapy within my lifetime. In the meantime, I will do my best to keep symptoms under control and keep an eye on my yearly MRIS.
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Making these videos has been easy and it’s a great way to put your voice out there without having to write multiple paragraphs. You should definitely consider sharing your voice on this video series.
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Good one Kevin! Mine is good after therapy sessions in the fall and early winter. I actually bumped into my therapist at the soccer fields where my kids were practicing yesterday. We had a great conversation and she even asked how I was doing. I think just going made a big difference but some of the mindfulness techniques I learned there continue to be helpful too.
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No, I don’t think that they’re same. I think the stem cell patches have to have light therapy, but I’m not sure.
Hyperbaric oxygen therapy is another one that I haven’t tried and don’t know that much about. I know it’s great for wound healing, but the data for it’s effectiveness on multiple sclerosis is not very promising yet.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6493844/
pmc.ncbi.nlm.nih.gov
Hyperbaric Oxygen Therapy for Multiple Sclerosis - PMC
Multiple sclerosis (MS) is a chronic, inflammatory, and degenerative neurological illness with no cure. It has been suggested that Hyperbaric Oxygen Therapy (HBO2T) may slow or reverse the progress of the disease. This article summarizes the ...
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That knowledge is definitely power! Thanks for the book KT.
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I don’t really have anyone local. The majority of my support group that has MS are people I’ve met online. It’s a little sad to know that most of us will never meet in real life, but the anonymity of an online forum probably makes me more apt to share openly.
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I suffer in any kind of temperature extreme. In the heat I wilt. In the cold, I stiffen and curl up. It’s like I’ve become a reptile and cannot regulate my body temperature. My neurologist and I are on a quest to find out if any lesion in my hypothalamus region are interfering with my inner thermostat, and whether I’m experiencing autonomic dysfunction.
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I just keep missing your posts Mike 😆
I had the covid vaccine in 2020 and even spaced it around my Ocrevus infusion so that it would be most effective in theory. I never made any antibodies, so I got covid anyway. Since I wasn’t producing anybodies and have now had covid three times without ever needing to go to the hospital, I haven’t bothered with any boosters. It seems counterproductive for me to take a vaccine that won’t protect me from a disease that won’t put me in the hospital.
With that said, my MS symptoms have increased since then, but since I have Progressive MS, they probably would have anyway. I doubt the vaccine had anything to do with it, but I can’t really say one way or the other.
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I sent it again.
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I can’t believe I didn’t see this earlier! I use CBD edibles at bedtime to help relax my legs so I can get a good night’s sleep. They do have varying levels of THC in them, but not enough that they are illegal in my state, which is not a state that allows recreational use. In my experience, they do help with stiffness and spasticity which is exactly what I need.
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When I was still in the army and deploying to various combat zones, I thought nothing of updating Wills and Powers of Attorney before each trip. It was a hazardous profession and doing that just made good, practical, sense.
With multiple sclerosis, I’ve avoided doing this because it felt like I was making end of life decisions for a nonfatal disease. I’ve recently gotten on the ball about it because it makes as much sense now as it did then. Even if MS is far less dangerous. I don’t know how I could be so practical about the first, but not the latter.
Wait, yes I do. I accepted the risks involved with being a soldier and it took years for me to accept that I had MS and was limited by it.
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Mike,
Let me know if you received it ok. Sometimes my emails go to folks spam folders.
Ben
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Mobility Works is where I got the van we have now. It’s a Chrysler Pacifica and has been very reliable and easy to get in and out of. Unfortunately, the lowered floor makes every speed bump a potential hazard and with three growing boys, we really need something bigger. I’ve got the wrap at Mobility Works keeping her eye open for a full size van. I looked at some of the SUV options, but they seem to have a lot of maintenance issues.
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I emailed it to you.
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Not at present.
Sorry, I’ve been wrapped up in the 31 Days of MS community outreach and haven’t given it as much time as I should.
If you’re willing, I’d really like you to consider submitting your story. I’ll PM you the information.
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An implanted phrenic nerve stimulator for Central sleep apnea may be in my future. I already have the implanted baclofen pump. So if I ever get to the point where I’m considering a stimulator for bowel and bladder control, and I will be well on my way to being truly Bionic.
