Benjamin Hofmeister
Forum Replies Created
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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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Benjamin Hofmeister
MemberApril 10, 2024 at 10:31 am in reply to: How a support system helps me persevere on my MS journeyThe 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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Benjamin Hofmeister
MemberApril 2, 2024 at 1:59 pm in reply to: How to prepare for an MRI: What they don’t tell youIf 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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Benjamin Hofmeister
MemberMarch 29, 2024 at 4:35 pm in reply to: Routines and rhythms to complete MS careWhen 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.
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Hi Tru!
Yes, being a part of a group where you don’t constantly have to explain symptoms is priceless.
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Thanks Mike. My next house will have a ceiling lift I swear. For now I’m stuck with an uncomfortable toilet/shower chair. I don’t intend to sit in it very long, but it could be more comfortable. If I’m not perfectly straight, one leg falls asleep. It is very easy to maneuver through.
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I doubt anyone took your “wow” the wrong way. I’ve never had a problem talking bladder or bowel problems with others with MS. Those without it often seem more embarrassed than I do.
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Hi Jilly,
Ed recently pulled back from both his column and forum duties. He’s still around, just easing back a bit. No one deserves it more.
multiplesclerosisnewstoday.com
After more than 7 years, ‘The MS Wire’ column is moving on
Columnist Ed Tobias bids farewell to his readers after seven-plus years of writing his BioNews column, "The MS Wire."
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Benjamin Hofmeister
MemberDecember 19, 2023 at 11:38 am in reply to: Pharmac funding treatment for PPMS in New ZealandYou are definitely a “right” pair alright. 🙂
I get wanting an illness that isn’t as unpredictable and randomly random as MS.
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I definitely should have used mobility aids sooner, but I had (have) a problem with stubbornness.
If you use one, I would like your opinion on toilet/shower chairs. I’ve used 3 so far and haven’t been really satisfied with any of them.
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Benjamin Hofmeister
MemberDecember 17, 2023 at 3:12 pm in reply to: Pharmac funding treatment for PPMS in New ZealandIt’s not your fault Jilly.
How are you dealing with this new news? What is your plan going forward?
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Benjamin Hofmeister
MemberDecember 17, 2023 at 3:08 pm in reply to: Get – U – up lift (for transitions)This one? Can you use it independently, or do you have to have a carer’s help?<div>
http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat_detail.jsp?prodID=GHS350
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invacare.com
Invacare Product Catalog - Invacare Get-U-Up Hydraulic Stand-Up Lift
/Lifts and Slings/Hydraulic Lifts/Invacare Get-U-Up Hydraulic Stand-Up Lift