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  • You shouldn’t. I kind of did. (PP MS) I was diagnosed in 2000 and for the most part continued trying to be as normal as possible for as long as possible.

    I was told by another MS person that I should work out with heavy – heavy weights and I didn’t. I should have. I also turned to mobility aids only as a last resort. Being stubborn only hurt me.

    I have been on this MS journey for 25+ years. It’s not easy as I’m sure you know. Don’t take for granted anything and work hard to stay mobile. Good luck

  • Ann,

    To me, it really wouldn’t matter. Here I am. MS for 25+ years. I don’t know of anyone I’m related to with MS. I wanted to reply to be a good MS Society – message board participant. I hope you’re well.

  • Mike Purcell

    Member
    May 18, 2024 at 2:36 pm in reply to: Bowels – Part Deux

    Again, I can’t believe I’m the only one with this challenge. If you are anyone involved with this.

    Anyone. (MS person, care person, relative) It doesn’t matter. Please share and maybe we’ll all learn.

    This is certainly 1 of my biggest challenges. Unfortunately, for the last 5 years I’ve been using catheter. In the past I’ve heard of many different approaches which I would be happy to share if it’s helpful.

  • Mike Purcell

    Member
    May 5, 2024 at 3:13 pm in reply to: Bowels – Part Deux

    I can’t believe I’m only one with this challenge. Caregivers? Others? What do you do to manage this?

  • Mike Purcell

    Member
    May 5, 2024 at 3:07 pm in reply to: How do you phone?

    I use an iPhone. I understand you can use desktop speaker Bluetooth connected which works even when the phone is in use. Does anyone know of this device?

    My challenge is when the phone call starts – voice control stops working. So, if the number you call as you to press 1 for something you can’t. You also cannot hang out or do other things using voice control.

    Can anyone suggest to do this?

  • Mike Purcell

    Member
    April 23, 2024 at 12:52 pm in reply to: How do you phone?

    I didn’t

  • Mike Purcell

    Member
    April 22, 2024 at 5:03 pm in reply to: PONS Device

    I don’t know about this… But I have used ESTEM… A physical therapist hope me use it. I never found it did much for me.

  • Mike Purcell

    Member
    April 22, 2024 at 4:56 pm in reply to: Baclofen Dosing Increases

    Here’s what I do. I take 30 mg a day. (10 mg tablets… 2 in the a.m. and 1 in the p.m.) A neurologist once told me his rule of thumb was no more than 60 mg per day. I combine it with 4 – AP. I’ve been taking the 4 AP for 20+ years. Lately, for spasticity I find a puff or 2 of marijuana in the morning helps a lot.

    How are you finding the baclofen pump works? It seemed to me quite invasive.

  • Mike Purcell

    Member
    February 24, 2024 at 2:15 pm in reply to: Ocrevus injection trial

    I had not heard about the injection. Here’s what I can say:

    I did the Ocrevious infusion 4 or 5 times. I stopped for different reasons.

    Where can I find information about the injection’s? Are you taking them?

  • Mike Purcell

    Member
    February 8, 2024 at 3:48 pm in reply to: Caffeine and MS

    It’s okay by me. I drink multiple cups of dark roast per day.

  • Mike Purcell

    Member
    January 12, 2024 at 3:04 pm in reply to: What is your favorite scooter?

    My answer depends on what you’re looking for. Since I’ve been at this while I transitioned from a scooter to a power chair. Now use a power chair full-time. When I was still somewhat mobile I used the scooter at disassembled into 3 pieces easily. As for power chairs Permobil is what I recommend.

  • Mike Purcell

    Member
    December 19, 2023 at 1:00 pm in reply to: USING THE MS FORUMS

    Is this

  • Mike Purcell

    Member
    May 31, 2024 at 6:17 pm in reply to: How do you phone?

    Ben:

    I think we are both similar. (EDSS, time with MS, caregivers – etc.) I would like to be able to communicate directly outside the view of this board. If you’re agreeable to that how best we do that?

  • Mike Purcell

    Member
    May 31, 2024 at 6:14 pm in reply to: How do you phone?

    Ben

  • Mike Purcell

    Member
    May 18, 2024 at 2:44 pm in reply to: How do you phone?

    Tell me more about this device. I’m looking for something that will Bluetooth connect to my iPhone where I can use it when on a call or to answer and hang up from a call. I use voice control to manage interaction with the phone. The voice control software stops working when a call is initiated.

    I’m dead in the water if the call says anything automated like press 1 for XXX. I can’t respond nor can I hang up. I must’ve phone call disconnects voice control doesn’t work. I’ve heard of devices that while voice control for things like phone, TV control, electric device control, etc. I have not been successful in connecting with them so far.

    Does anyone have experience with other technology that allows you to control devices?

  • Mike Purcell

    Member
    May 5, 2024 at 3:17 pm in reply to: Bowels – Part Deux

    Is there one kind of dried

  • Mike Purcell

    Member
    April 26, 2024 at 5:44 pm in reply to: Baclofen Dosing Increases

    Thanks for the reply

  • Mike Purcell

    Member
    April 22, 2024 at 5:12 pm in reply to: 4 – AP?

    No, it’s separate. 4 – AP is something you need to get from a compounding pharmacist. It is supposed to help nerves which are demylimated(sp?) work better. I can only tell you that it helps me. I’ve been using it for over 20 years. You need to ramp into the dosage. Your doctor/neurologist can explain.

  • Mike Purcell

    Member
    February 8, 2024 at 3:35 pm in reply to: Voice & Technology

    This is my 2nd attempt to reapply to you.

    Sometimes the voice to text software does not work as I expected it to. I will apply only partially came through here is my 2nd attempt. I use Dragon and it works good for a Windows PC. More and more vendors are incorporating voice control into their software products. My biggest issue is using the phone. I’m still searching for something. I know of a person that will help you install and configure Dragon remotely. Let me know and I will send you her contact information. Good luck

  • Mike Purcell

    Member
    January 25, 2024 at 3:02 pm in reply to: Voice & Technology

    Depending

  • Mike Purcell

    Member
    January 28, 2024 at 2:15 pm in reply to: How can I help you?

    Deborah Pierce is the architect located here Newton,MA. I am sure Google will find her. The other person is in Canada.

  • Mike Purcell

    Member
    January 13, 2024 at 7:47 pm in reply to: How can I help you?

    Boy am I with you on that comment. I’ve been working on a new place design myself over the past 3 or 4 years. There are couple books on accessible dwellings. One written my the local architect. (She’s in a Newton MA) and another written a paraplegic lady in Canada. Both very informative. If you would like I can post the titles but I’m sure Google will provide them for you.

  • Mike Purcell

    Member
    January 12, 2024 at 3:39 pm in reply to: How can I help you?

    Here’s what I do. I use a Get–U–up lift to get on and off regular toilet. I cannot do the commode thing. My shower chair has a hole in the seat but I don’t use it or that, only to shower. I’m interested in a more comfortable shower chair. This one is hard is hard to use.

  • Mike Purcell

    Member
    January 12, 2024 at 2:29 pm in reply to: Do you talk about your bowels?

    I did not mean to say WoW… In a disrespectful manner. I can relate to having difficulty. 25 years later (PP MS) I can tell you without hesitation, it doesn’t get easier. If anyone has an approach to manage this please share with us.

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