Cyndi B

[Cyndi B]

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 of drivers.   Should have done it 2 years ago.

[Cyndi B]

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 several years ago but just went with regular push wheelchair for initial experience — never saw a motorized lightweight option.  Garage is getting pretty full with my various aides but I’m still exploring options.  Thanks!

[Cyndi B]

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 type of, test/exams were required in advance?  Thanks — so glad to here your initial treatment was beneficial so quickly.

[Cyndi B]

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 [ankle foot orthotic]  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?

[Cyndi B]

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 with it for time being.

[Cyndi B]

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 improvement better than anything else.  Botox release may better for those suffering from “frozen” shoulder, toes, or similar joint issue than stiff or weak hamstrings that just don’t want to flex.  Hope you find what works for you!

[Cyndi B]

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 constantly running to the restroom.  : )

[Cyndi B]

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 presently in process of remodeling bath room to eliminate step/ledge to enter shower.  Everyday is a bit of a work in process to make things work.

[Cyndi B]

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.

[Cyndi B]

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

[Cyndi B]

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 told me a little about the Radar Card system in the U.K.  Pretty cool!  Maybe an idea for the U.S. to consider.  Thanks!

[Cyndi B]

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 employees? gross revenue? % income from walk in/OTC sales?  Like you Ed, I can wrestle my way thru most doors, 1/2 because I’m able and 1/2 because I’m willing.  Regrettably, not all persons with mobility disabilities are so fortunate.  Those who choose, or default to, dropping out of society because they fear the obstacles need a voice and, ultimately, the ability to reengage in public life without embarrassment or fear of “what happens when I need to go to the bathroom?”  Generally speaking, I think we are uncomfortable with seeing handicapped people…not because of any ill will but, rather, because we’re not sure how to act, what to (or not to) say.  I recently saw the movie Mamma Mia II.  An early scene takes place in a busy restaurant.  When the camera panned over the restaurant I was pleasantly struck by the fact that there was a woman in a wheelchair eating in the restaurant.  That alone was enough for me…the simple recognition that disabled people exist, go out to dinner, and interact in society.  But wait!  When the restaurant scene turns into a full fledged song and dance number and the woman in the wheelchair figures prominently in the sketch I was ready to contact the film’s producers, writers and choreographers and say “Thank You!!!”.  Such a huge statement without saying a single word.

Again, this is not only an MS issue but it’s where I’m starting.  Other persons with mobility disabilities, veterans, and senior citizens would all benefit from greater access.  Instead of telling a wounded warrior “thank you for your service” why aren’t we doing something that reintegrates the person into public life through fully accessible places of business?

[Ed, thanks also for the HTML code clean up.  And Debi, love your reference to wall walking…every time I do the same it’s with thoughts of the irony of my years telling my children when they were young to “keep their hands off the walls”.  Of course, as a friend reminded me…my hands were not covered in PB&J!]

[Cyndi B]

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!

[Cyndi B]

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 flatter surface.  I cannot use the single pedal/bar variety for extended periods and therefore prefer a scooter with a “floor board” of sorts.  Again, this is a personal “what works best for you” decision but I offer it up for your consideration in selecting a scooter.  I have no doubt you will find one that works best for you and that you will embrace and love the freedom.  Good luck!

[Cyndi B]

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 others are suffering but only that it helps knowing I’m not alone in these feelings…that we’re all in this together — whether directly or via the internet : )!

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