Advice on mobility aids?

[shoshin]

I am not sure how to ask this question, but am hoping people can give me some advice or share their experiences.

My ability to walk any distance or at any great speed is limited. I recently walked (with my cane) what Google Maps said was .7 miles. I did make it with a few pauses, but I don't think I could have gone much farther. I had no energy to spare to look around at anything. My feet and lower legs got really numb, which compounds my balance problems. I had to sit down for quite a while when I was done and I slept like a log that night. I remember that I used to find walking pleasant, but that seems so long ago now.

I can work around this limitation in my day-to-day life. However, in conjunction with a trip I have to take for work, we are hoping to visit a city where we have family and friends this summer. I don't want to be a complete stick in the mud and we'd like to do some touristy things, but as I said I can't walk any distance at all.

What sort of mobility aid do you think would be most practical in this situation? I am not yet to the point where I need something like this on a regular basis (although if the past predicts the future, I will get there). Where do you find someone to consult about these types of things? Do you think an inexpensive manual wheelchair would be a good short-term solution? Some kind of rental? Other ideas?

sho

[lynne769]

Hi I find myself having to use Both cane and mobility scooter! depends on how my balance, fatigue and everything else is that day ie, cognitive skills ect.  Generally thou going out for a whole day with my kids like a shopping centre or the beach I need my scooter, otherwise I would hold them up and spoil their day with pain and fatigue!
Although at only 43 do get paranoid at the looks people give me, as many people have made comments, like, there doesn;t look like there is anything wrong with you!!! Which really gets my back up!

[debgen]

Thank you Ren! I have just recently decided that it was time for me to get a Rollator. I have difficulty keeping my balance when walking with my cane. I do just fine when using a shopping cart in a store so I am thinking that a Rollator should work for me. I am going to check th website that you posted. Thanks again :)
Deb

[twopack]

Here's a link to the various archived presentations (audio and power point video).
  http://www.spinalcord.org/webinar-archive/

It's good but attending in real time was best AND you got to ask questions.  There is an area to click on to sign up for the notifications.  There are lots of presentations coming up soon.

Mary

[rendean]

I use a cane and a rollator. Mine has hand brakes and a reversible back rest so that my rollator can be converted to a transport chair should I have overdone myself. I love mine. The only probably is the weight on some of the models. Below is a link to the "drive" site where I purchased mine.

Hope you can find a solution that fits for you!

http://www.phc-online.com/Drive_Rollator_Center_s/5432.htm

Ren

[AMO]

Dear Shoshin,

Look to your insurance   coverage.
What proviiders you have.

The guy for my w/c durable medical supply talked with me at lenghth and was very knowageble and understanding. He deals with all kinds of situations and gave me good insight and we( my husband included) could choose best for me/us.
Then I could call my neuro to say what a script and papers to write.

I hope you are able will look aaat this  as your world will open up to you again.    not how we thought ,, but okay.
amo

[teenyturner]

Sho, at least your neurologist said something even if it wasn't helpful.  Mine just said"don't know" for which I read "don't care".

I was reluctant to get any mobility aids because it seemed like I was being overly dramatic.   It always seemed to me that someone (goodness knows who) was going to tell me that "you need to be in a chair/scooter etc". But it doesn't happen that way.

It's a decision you have to make for you.

My scooter arrives tomorrow, I'm starting to get excited that I can go to the local hairdresser and finally get a haircut.  I feel like a shaggy dog at the moment.

Good luck with your choice.

Regards

[shoshin]

Thanks, guys, for all the great advice. You're so much more helpful and knowledgeable than my neuro about some things. I saw him this week and although he's quite willing to sign any paperwork, that's about as far as his help goes. His impression is that when people get to this stage, they just go out and buy something. He told me to look up the local stores (there are several) in the phone book(!) and the salespeople will help me (seems a bit like letting the car salesperson pick your car to me). He did say that he didn't think I was at the point of needed an electric wheelchair and that a scooter wold be better.

I will definitely look into rentals.

sho

PS Mary: Where do you sign up for the United Spinal transcript notification?

[Sarahsmom46]

Definitely look into the rentals that were already suggested by Mary and Lu.  That was the first thing I thought when I saw your post too.  That may work with your going on vacation and being able to keep up with being able to get out and do tours.  Look into a handicap accessible van to get a scooter around too.

As for your daily life, well, we are in the same situation.  I can get around my office and do the smaller jaunts with a cane and less effectively a walker.  But, I can't drive so I have gone for another evaluation for a power chair.  If your mobilitiy issues are affecting your quality of life then it might be time to look into battery operated aides.  I can't do the wheelchair as the fatigue kept me from being able to build up arm strength.  The PT who did my eval at the National Rehabilitation Hospital in DC told me that wheelchairs were not recommended for MS patients at all unless they were using them in the home or there would be someone pushing them arond.  Wheelchairs are not really an option for us.  

I hope you find a solution and that everyone's suggestions help with that decision.  

Julie

[Lulu54]

Sho, depending on where you are going, you may be able to rent a scooter for the trip.  I believe that is fairly common here in the US but don't if you are heading overseas.

I hate hearing that you need these aids but am pleased to know you aren't letting stubborness get in the way of your health.

best, L

[twopack]

And thanks Sho for linking to United Spinal Association's wheelchair webinar.  I have an email sitting in my box about it and thought of it here.  I'll try to post it on a separate topic as well but I've got to bump up their "Sexy" webinar first.

I signed up to receive notification about the videos and transcripts of webinars as they are made available.  I'll pass along any updates I get.

Mary

[twopack]

I found a walker to be very helpful at a time when my balance was off.  When I used it I didn't waste energy on keeping my balance and could walk much further.  A cane only helped for short distances as my arms scream with fatigue before my legs do.

Fortunately, my balance is better now but I do lose strength pretty fast and need frequent breaks to rest and recharge.  If I had to keep up with other people going much distance at all I'd have to have wheeled transportation.  I just haven't been in that position yet.

I'm glad it's fun time that is getting you to the point of considering your mobility needs.  I'd hate the fuss and inconvenience of a wheelchair (not to mention finding a designated pusher) but that might be the best solution if walking demands frequent and long recovery periods.  

I'd definitely look at light weight and destination rentals if your main use right now will be away from home.  I think some of the NMSS chapters have rentals available.  If you're thinking a scooter would be better I'd find one to practice with beforehand.  They are tricky to get the hang of and I personally can't stand to give myself away with the, "Be Careful!  I'm backing up!!" warning buzzer.

I remember seeing a combination walker/wheelchair advertised in a magazine recently.  I don't remember much about it and have no idea on the pricing.  It's an intriguing idea though.  I'll try to find it if you'd like.  


Here's a little something I found in the National MS Society's Professional Resource Center publication titled:
Serving Individuals with Multiple Sclerosis in the Home: Guidelines & Recommendations for Home Care Providers and Personal Care Assistants

"Ensuring that an individual obtains the right type of wheeled mobility (manual or power), with the features that are most appropriate for his/her physical, cognitive and environmental situation is critical and complex.  Referral to a specialized seating and mobility clinic will provide the greatest likelihood of ensuring that a person with MS obtains the best and most appropriate wheeled mobility device. Given the restrictions that insurance companies often place on the wheeled mobility, the importance of these comprehensive assessments cannot be overstated."  (page 81)

I'm not sure where you'll find that seating and mobility clinic but I'd start with a trusted PT.  You just may end up needing to have a couple of different aids on hand to fit your plans for any given day.

Good luck Sho on finding the tool to keep you going and 'out there' in the world!!

Mary

[supermum_ms]

Just a thought but do chemists hire out aids over your way, I know the bigger ones over here do, it might be worth having a look around or contacting your neuro's office because they must know where etc

Cheers........JJ

PS i'd lend you my walker but i'm not sure it would fit in an envelope lol

[shoshin]

Guitar_grrrl: I'm sorry you're going through this, too. I hope you find a scooter that works well.

Shell: Thanks for the moral support.

JJ: You're right that none of these are ideal options. I'm afraid that a walker won't be enough, although it would be interesting to try one and see how different it is from a cane. My legs just won't hold me upright that long no matter what. Sometimes at the end of a shopping trip I'm reduced to clinging to the counter to stay upright long enough to pay.

I would have to have someone push me in a manual wheelchair because I don't think I have the arm strength to go very far under my own power. I'm not sure I'll like the loss of control, but it does seem like a relatively inexpensive option.

Of course, I probably couldn't lift the scooter, either, and I don't think I'd like having to deal with it in any narrow spaces.

If anyone else is interested in wheelchairs, the National Spinal Cord Injury Association is having a webinar on Feb. 29: http://www.spinalcord.org/usersfirst-webinar/ Unfortunately, it's not at a good time for me and it doesn't look like they're recording it.

Good advice about trying the different options.

sho

[supermum_ms]

Morning Sho,

I was wondering if a walker would be more practicle in the short term. They are light weight, fold up, indoor/outdoor use, have a seat so you can take frequent breaks and are more stable than a cane. Ideally, what your looking for is something that you can use 'if' you need more assistance than your cane, a walker might fit the bill.

Scooters that are narrow and collapse are also good for infrequent use but i still find them very heavy, so i'd be done by the time i'd get it out of the boot. If you are considering a scooter you can take with you, remember your going to be lifting it. Oh and some of them sound like a lawn mower lol

The problem with manual wheel chairs is that you always need someone else to push, or your left shuffling your feet to move if you dont have arm strength, which i'd think would be even more exhausting. Though if your mainly thinking you'd not be on your own, then it would be better than a walker because your not using up your energy to get around.

I'm not sure if you have this over your way, but over here all the major shopping centres have free loan mobility aids. I was thinking you might like to try each before you buy, see which works better for you.

Cheers............JJ

PS our ozzie ebay has lots of almost new mobility aids, its worth looking :-)

[sllowe]

Hi Sho - I've no experience yet, but wanted to say, sorry you have to consider  :(  But, knowing you, you've kicked this around for awhile, and now need to address it. Do what you have to - to enjoy those long walks/trips when needed.
(((Hugs)))
shell

[Guitar_grrrl]

I'm getting close to getting myself a scooter for the long touristy stuff.  It'll save your energy, and some models are quite portable and collapsible (fit in a VW trunk!).  I still can walk about a mile with rests, but like you, my legs go numb, even though my muscles seem to remember what to do.  Of course the activity shoots the whole rest of my day.  

A scooter will let you save energy to enjoy dinner out with your friends!