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Cyndi B

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@cyndib

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    Cyndi B replied to the topic Driving with MS: Hand Controls for Cars in the forum Durable Medical Equipment 3 years, 4 months ago

    Hello, this is a long overdue follow up to my initial question about conversion to hand controls on my car.  I’ll keep it simple…BEST mobility/independence decision ever made.  LOVE, LOVE, LOVE my hand controls.  Went with the GT2 Lever mfg by Guidosimplex.  Easy as pie to learn/adapt.  Simple to use.  On/off switch allowing quick change out o…[Read more]

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    Cyndi B replied to the topic What mobility devices help you to get around? in the forum Durable Medical Equipment 3 years, 4 months ago

    Joan,

    Does the Q7 fold?  Trying to otherwise figure out how you get it in your Fiat?  Where and how does the detachable motor assist work?  I currently have and travel with a Free Rider Luggie scooter which I generally love…but sitting in a chair type wheelchair would occasionally be nice if compact and lite.  I looked at the Quickie sev…[Read more]

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    Cyndi B replied to the topic Is incontinence an issue for you? in the forum Living With MS 3 years, 4 months ago

    Joan, I hope you will continue to post on your experience with botox for bladder control.  I’m very interested in and hopeful to learn that your initial experience is long lasting (i.e. even 3 months would be great).  Was the procedure performed by a urologist?  In office, hospital or clinic?  How long did it take?  Were there any, and if so, what…[Read more]

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    Cyndi B replied to the topic Do you drive with a brace? in the forum Durable Medical Equipment 3 years, 4 months ago

    Sort of off topic but related, and picture reminded me of wanting to ask this question:  Does anyone suffering from foot drop use an AFO   What kind? Helpful in training the muscles? Any improvement in foot drop/walking after using the device?  I’m concerned with using an AFO and then becoming dependent on it.  Thoughts?

    • Profile picture of Debi Wilson
      Debi Wilson replied 3 years, 4 months ago

      Good question, Cyndi. I’m sorry I don’t have any answers for you on that. Ed the other moderator, or some of the members may.

  • Profile picture of Cyndi B

    Cyndi B replied to the topic Are you on the high dose biotin protocol? Are you seeing good results? in the forum Alternative Treatments 3 years, 4 months ago

    I look forward to reading others’ opinions on this.  I have been on high dose biotin for about 2 years now and I’m pretty much on auto-pilot for taking the stuff.  Am I better?  Probably, but I think it has somewhat  levelled out.  Can’t say I’m seeing continued improvement but neither can I say I have experienced a decline.  Guess will stick…[Read more]

    • Profile picture of Debi Wilson
      Debi Wilson replied 3 years, 4 months ago

      I was on high dose biotin
      for a year, Cyndi.I had a pain in my spine that went away and I felt I had a little more energy. But, then my walking started to worsen so I stopped taking it .

  • Profile picture of Cyndi B

    Cyndi B replied to the topic For Multiple Sclerosis Symptoms, Botox Seems to Have Myriad Uses in the forum Alternative Treatments 3 years, 4 months ago

    As indicated in prior post, I was then about to try low dose botox to treat leg muscle stiffness.  I have since done so.  No benefit, detriment or change.  Maybe too low dose?  Maybe, but I’m passing on a round two to increase the dose.  Pilates, exercise, swimming (a/k/a water walking and movement) and/or stretching seem to provide impr…[Read more]

    • Profile picture of Debi Wilson
      Debi Wilson replied 3 years, 4 months ago

      I’m sorry that the botox didn’t work for you!

  • Profile picture of Cyndi B

    Cyndi B replied to the topic For Multiple Sclerosis Symptoms, Botox Seems to Have Myriad Uses in the forum Alternative Treatments 3 years, 9 months ago

    I am trying low dose Botox this week for leg muscle stiffness.  Fingers crossed that will better mobility issues. I admit, however, I’m skeptical.  I enjoyed reading the articles regarding Botox use for urinary issues — not quite ready but will continue to watch/read as more info becomes available…and/or I get sick of putting up with c…[Read more]

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    Cyndi B replied to the topic Has your living arrangement changed since your MS diagnosis? What has changed? in the forum Living With MS 3 years, 9 months ago

    Yep and still some what of a moving target.  Sloped lot resulted tin 2-steps up or down throughout the house and to/from back yard.  Don’t want to move.  Have installed decorative hand rails that work well.  Have plans to install interior ramps but am resisting that next step as long as can.  Have however given in to safety needs and are pres…[Read more]

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    Cyndi B replied to the topic Accessibility needs more access in the forum Living With MS 3 years, 10 months ago

    Jacqueline,

    Thanks  for the great info on Radar Keys.   Not only will I look to obtain one next time I’m in the UK, but will definitely keep this information as a terrific reasonable accommodation idea that could be implemented in the US.

  • Profile picture of Cyndi B

    Cyndi B replied to the topic Accessibility needs more access in the forum Living With MS 3 years, 10 months ago

    Sorry Ed – that was my only encounter with the Radar Card. Hopefully Jacqueline can provide us both more details.

  • Profile picture of Cyndi B

    Cyndi B replied to the topic Accessibility needs more access in the forum Living With MS 3 years, 10 months ago

    Jacqueline,
    While at a restaurant in Oxford 2 years ago I first encountered the disabled loos when the manager noticed my confusion at how to open the door.  I was in my wheelchair and he said something like “oh, let me help, you must have forgotten your card”.  Saying “sorry, I didn’t know I needed a card” he realized I was from the U.S. and t…[Read more]

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    Cyndi B replied to the topic Accessibility needs more access in the forum Living With MS 3 years, 10 months ago

    Thank you Ed and Debi.  I know this is a huge uphill battle but I want to at least bring attention to it.  No, I don’t believe we will see an automatic door installed in every business overnight…but if national big box stores can do it…smaller national brands can as well.  There will need to be some manner of sliding scale…number of em…[Read more]

  • Profile picture of Cyndi B

    Cyndi B started the topic Accessibility needs more access in the forum Living With MS 3 years, 10 months ago

    This started with my reply (repeated in part below) to an August 10, 2018 article by Jamie Hughes, regular MS columnist.  In short, Jamie spoke to the importance of unabashed personal advocacy.  It was just the push I needed and, now, I hope you, MS Forum readers, can contribute to my crusade with your thoughts, experiences, warnings, and i…[Read more]

  • Profile picture of Cyndi B

    Cyndi B replied to the topic Introducing myself in the forum Welcome 4 years, 1 month ago

    Ed, I recently passed along Kudos to Debi Wison for her involvement in and contributions to the MS Forum and now want to reiterate those Kudos to you as well.  Great place for asking, learning, sharing and opening up the dialogue on the MS issues we tackle daily.  Thanks!

  • Profile picture of Cyndi B

    Cyndi B replied to the topic Mobility scooters and MS in the forum Durable Medical Equipment 4 years, 1 month ago

    Jacqueline (and others considering a mobility scooter),  Just wanted to add one additional consideration you may want to factor in when assessing scooters: Do you have limitations or restrictions on leg position on a scooter?  Specifically, can you manage a pedal/bar on which to place and hold your feet…or…do you need or prefer a larger f…[Read more]

  • Profile picture of Cyndi B

    Cyndi B replied to the topic Do you ever feel alone or left out due to MS? in the forum Living With MS 4 years, 1 month ago

    Absolutely!  Almost every day to some degree.  In short, I have lost my ability to do things or go somewhere on spur of the moment.  Most everything now requires more forethought and planning.  I miss that spontaneity and independence…but it is helpful to know others are struggling with this as well…not that I take any pleasure in knowing oth…[Read more]

  • Profile picture of Cyndi B

    Cyndi B replied to the topic Mobility scooters and MS in the forum Durable Medical Equipment 4 years, 1 month ago

    I bought a Luggie (Free Rider) scooter about a year ago.  I both love and hate it.  I love the independence it gives me when just zipping around a store, visiting a museum, going to a movie, or managing long (and short) distances in airports.  It also makes me a more pleasant companion — while my husband never objected to pushing me in a wh…[Read more]

  • Profile picture of Cyndi B

    Cyndi B replied to the topic Driving with MS: Hand Controls for Cars in the forum Durable Medical Equipment 4 years, 2 months ago

    Excellent!  Thanks for the articles Debi.

  • Profile picture of Cyndi B

    Cyndi B replied to the topic Driving with MS: Hand Controls for Cars in the forum Durable Medical Equipment 4 years, 2 months ago

    Thanks Nancy — I will follow up as well with the MS society.

  • Profile picture of Cyndi B

    Cyndi B started the topic Driving with MS: Hand Controls for Cars in the forum Durable Medical Equipment 4 years, 2 months ago

    This question is perhaps more appropriate for “Living with MS” forum and I have in fact posted it there as well… I want to make the conversion to hand controls for driving my car. Anyone with experience in this area?  Type? Brand? Accelerator rings? Any other thoughts and recommendations are welcomed.  Thanks

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