Benjamin Hofmeister
Forum Replies Created
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Thanks Mike!
I’m sure I’ll have plenty of questions.
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Great column and an even greater run down of reducing drug costs!
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Hi again Luther the tao patch is new to me and I tend to be a little skeptical of most things, but everybody’s different and what works for someone may not work for everyone.
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Hi Luther and welcome to the MS forum! Thank you for sharing your diagnosis story. Even though there are many common elements everyone seems to have a different one and we all benefit from hearing each others. Yes SSDI can be real pain.
I went ahead and moved your Tao Patch question to the treatments forum. I think it’ll get more attention there.
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Well you are ahead of me. The best I could manage right now is to have my picture taken near a bike. My spouse is my warrior too and when the kids get a little bigger they’ll be my warriors as well.
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That is great news. I am so glad to hear that it worked for you. I visited psionics Booth while at the cmsc conference and they were marvelous people. Now that I am wheelchair bound it probably isn’t an option for me, but while I could still walk I wore several different electro stimulating devices. Both the walk aid system and the bioness system works well for me and probably extended my time walking.
The only drawback I ever encountered was when someone saw me in shorts wearing my walk aid at the grocery store and asked if I was under house arrest.
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Great article Leigh Anne! I have ppms and my doctor and I decided to try pull steroids for fatigue. For the first 36 to 48 hours after an infusion I felt great. I did experience some insomnia but not really any more than usual. Unfortunately after that 48 hour honeymoon period, I slumped and it took me about a week to get back to where I was feeling normal. I have heard that steroids work wonders for relapsing MS though they didn’t help me very much with ppms fatigue.
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Good one Desiree! Self care is never selfish!
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I usually get their tropical trail mix, but they have a variety. I have problems with choking on very juicy fruits (dual consistency), so dried fruit helps in that regard too.s
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I get the dried fruit mix from my local SAMs . Lots of fiber and it encourages me to drink a lot of water. I don’t eat it everyday but some every now and then helps keep me regular.
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Sorry I missed this Mike. I can’t hold the phone to my ear for anything longer than a 5 minute call. I use a bone conduction Bluetooth headset made by After Shox. It doesn’t go in or over your ears, so it doesn’t isolate me from normal sounds.
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I had good luck with a Walk Aid and later a Bioness device when I could still walk. I’m a fan of the concept and hope it helps lots of people.
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Hi Mike yes it is incredibly invasive. I would not recommend one to anyone that can control their spasticity any other way. My spasticity was very intense and could not be controlled with oral medication. I think at miy peak I took 30 mg of Baclofen each day and it did not touch my spasticity but had me sitting in a chair drooling on myself. Now 4 years after it was installed my pump is set to deliver 80 micrograms each day. A fraction of the oral dose, so I get all the benefits with none of the side effects. It was the right answer for me, but definitely isn’t for everyone.
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The first live MS support group I tried didn’t want to talk about MS. At least none of the unpleasant, negative parts, which is what I needed support on the most.
I was so disappointed that it took nearly 4 years before I looked for and found an online forum that fit. I shouldn’t have waited so long. You’re so right! The right support structure is everything!
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If I have one more, I’ll probably start sticking to the fridge. I always wear my own comfortable clothes too. That might be your best piece of advice.
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When I was diagnosed I remember being so relieved to finally have an answer. It took almost a week for the reality (as I knew it then) to fully sink in. Everything was about to change — job, ability, my whole life. If it could just be consistent from day to day.
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I’d do it if the VA offered it to me. I’m already on the fast infusion rate and after 14 infusions, I doubt I’d have a reaction.
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Hi Mike,
Ed was referring to this
multiplesclerosisnewstoday.com
ECTRIMS 2023: New under-the-skin Ocrevus found effective in MS |...
Most MS patients treated with a new under-the-skin formulation of Ocrevus had no relapses or new MRI activity over six months, data show.
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Everyone has a story to tell and no two are alike. Tell yours! You won’t believe how therapeutic it is.
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Thanks Mike! That seems to be the majority concensus. Maybe if I didn’t have caffeine and then sit in my wheelchair doing nothing 🙂.
I haven’t stopped, I just cut back to try and tailor the dose to my level of activity. Come to think of it, I never could have energy drinks like a lot of my teammates over seas did either.
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Awesome, thanks Mike!
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I just choked a little while eating lunch and taking a sip of water while chewing a bite of food. I know mixing a solid and liquid (dual consistencies) is a no-no, but I did it anyway and ended up choking and coughing. The speech therapist who I saw when I started having swallowing problems taught me prevention, but also gave me a device and exercises to strengthen my exhalation muscles. She said that preventing all choking was unlikely so building a strong cough to keep my lungs clear was very important.
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I don’t have any good recommendations, or reviews of software, but as my hands get worse, I’m looking into a voice to text option. You’re the third person who’s mentioned Dragon, so I’m starting to lean that way.
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Yes, please post the titles and links, if you have them. I’ve started writing down ideas, but I really rely on expert opinions.
