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  • Good one Desiree! Self care is never selfish!

  • Benjamin Hofmeister

    Member
    May 8, 2024 at 7:25 am in reply to: Bowels – Part Deux

    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

  • Benjamin Hofmeister

    Member
    May 4, 2024 at 5:01 pm in reply to: Bowels – Part Deux

    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.

  • Benjamin Hofmeister

    Member
    May 4, 2024 at 4:52 pm in reply to: How do you phone?

    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.

  • Benjamin Hofmeister

    Member
    April 23, 2024 at 3:26 pm in reply to: PONS Device

    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.

  • Benjamin Hofmeister

    Member
    April 23, 2024 at 3:23 pm in reply to: Baclofen Dosing Increases

    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.

  • Benjamin Hofmeister

    Member
    April 10, 2024 at 10:31 am in reply to: How a support system helps me persevere on my MS journey

    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!

  • Benjamin Hofmeister

    Member
    April 2, 2024 at 1:59 pm in reply to: How to prepare for an MRI: What they don’t tell you

    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.

  • Benjamin Hofmeister

    Member
    March 29, 2024 at 4:35 pm in reply to: Routines and rhythms to complete MS care

    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.



  • Benjamin Hofmeister

    Member
    February 25, 2024 at 6:40 pm in reply to: Ocrevus injection trial

    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.

  • Benjamin Hofmeister

    Member
    February 25, 2024 at 6:37 pm in reply to: Ocrevus injection trial

    Hi Mike,

    Ed was referring to this

    https://multiplesclerosisnewstoday.com/news-posts/2023/10/12/ectrims-2023-new-under-skin-ocrevus-found-effective-ms-trial/

  • Benjamin Hofmeister

    Member
    February 14, 2024 at 11:58 am in reply to: We’re looking for MS stories!

    Everyone has a story to tell and no two are alike. Tell yours! You won’t believe how therapeutic it is.

  • Benjamin Hofmeister

    Member
    February 9, 2024 at 12:00 pm in reply to: Caffeine and MS

    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.

  • Benjamin Hofmeister

    Member
    January 28, 2024 at 2:33 pm in reply to: How can I help you?

    Awesome, thanks Mike!

  • Benjamin Hofmeister

    Member
    January 19, 2024 at 12:35 pm in reply to: Choking

    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.

  • Benjamin Hofmeister

    Member
    January 15, 2024 at 3:47 pm in reply to: Voice & Technology

    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.

  • Benjamin Hofmeister

    Member
    January 14, 2024 at 2:05 pm in reply to: How can I help you?

    Yes, please post the titles and links, if you have them. I’ve started writing down ideas, but I really rely on expert opinions.

  • Benjamin Hofmeister

    Member
    January 13, 2024 at 11:57 am in reply to: Introductions

    Hi Tru!

    Yes, being a part of a group where you don’t constantly have to explain symptoms is priceless.

  • Benjamin Hofmeister

    Member
    January 12, 2024 at 8:26 pm in reply to: How can I help you?

    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.

  • Benjamin Hofmeister

    Member
    January 12, 2024 at 8:15 pm in reply to: Do you talk about your bowels?

    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.

  • Benjamin Hofmeister

    Member
    January 4, 2024 at 2:18 pm in reply to: Where is everybody????

    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.

    https://multiplesclerosisnewstoday.com/columns/2023/12/08/after-more-than-7-years-ms-wire-column-is-moving-on/

  • Benjamin Hofmeister

    Member
    December 19, 2023 at 11:38 am in reply to: Pharmac funding treatment for PPMS in New Zealand

    You are definitely a “right” pair alright. 🙂

    I get wanting an illness that isn’t as unpredictable and randomly random as MS.

  • Benjamin Hofmeister

    Member
    December 18, 2023 at 11:44 am in reply to: How can I help you?

    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.

  • Benjamin Hofmeister

    Member
    December 17, 2023 at 3:12 pm in reply to: Pharmac funding treatment for PPMS in New Zealand

    It’s not your fault Jilly.

    How are you dealing with this new news? What is your plan going forward?

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