I'm planning a 3 week trip this fall. The initial travel day will require passing through four airports. I still walk fairly well, but getting through a day that long, with that much standing/walking would result in cramping sleepless nights and ruin the first week of the trip. My wife and friends are quite prepared to push me around in a wheelchair, but I worry about the reaction when I get up out of the chair. Any thoughts?
Cam, you raise an interesting question and one that I hope I address in the article on Mobility Devices that I posted today in my blog. Living with KD
Speaking from experience ... airports are killers (standing and waiting). Also, I have found that my most serious falls happened because I was fatigued.
Stay fresh and forget about what others think. You know what is best for you and that is to be able to enjoy the trip without fear of falls or excess fatigue.
Have a great one!
Thanks for the information, Bruce. I enjoyed reading your blog.
Trip went well. Using a wheelchair in large airports really made a difference. Europe has much more difficult walking surfaces, such as cobblestone streets, and have many more tripping areas - sidewalks are rarely flush from one surface to the next. With concentration on walking, much is possible.
Are there any articles available to read regarding when a person should start using a wheelchair the majority of the time, as opposed to a walker....such as how often they fall, etc/
Cathy, I have not read anything that would suggest when a person should switch. I know that I used a cane for a long time and had a scooter for longer distances or walking with my wife on an uneven surface. When I moved to a walker, I found it was more difficult to walk distances even though I felt safer. Fatigue becomes the issue.
A physical or occupational therapist can be the best resource to help determine if it is time to move to a wheelchair. As his doctor to recommend a PT and he/she will help determine what the next step is. It could just be a physical therapy program where he improves his leg and ankle strength initially. Or it could mean a recommendation to have a chair available when he needs it.
Safety should be the number one concern. I was falling more and the falls occasionally resulted in a serious injury. That was when I decided to swallow my pride and use a chair as my primary transportation. That didn't mean I gave up the cane and walker, it just meant that whenever I had any doubts, I used the chair. I have not fell in several years and I find that the constant stress I lived with while still trying to walk any distance is gone.
Safety is JOB #1.
Location: San Luis Obispo CA
Some terminology and notes:
wheelchair - a non-powered chair - no that useful as a mobility tool for KD - used mainly for transport when someone else is doing the pushing - self transfers are difficult
walker - walking frame with two small wheels and two legs - good for KD for short distances around a limited area - very useful/required for self transfers later in the KD experience
rollator - walking frame with four wheels and often a seat for resting - useful for a time for KD when you just need something to hang onto for balance while walking - often a shopping cart works just as well so you often don't need it out and about. KDer needs to be able to stand for as long as you want to be out and about. Pretty difficult to get in/out of a car for a KDer.
scooter - three/four wheel scooter useful for getting around and sitting when you can transfer from a standard height chair - not great for indoor use. Attendant needed to take small ones in/out of car. A trailer hitch (receiver mount) lift that clamps the scooter in place for transport could be operated by a KDer - lift needs automated clamp "tie down" feature otherwise an attendant will be needed to tie down the scooter.
Powerchair - a powered chair - user operated chair. Can be equipped with elevating seat to help with self transfers. Heavy duty lifts or a ramp van required for independent transport.
Personally I never bothered with a cane. I used a rollator at work around the building but didn't take it out and about. I used an entry level powerchair and a hoist mounted in the back of a mini-van for a few years. I walked when I could and used the powerchair for "duration and distance." Once I couldn't operate the hoist safely I purchased a more advanced chair and a ramp van (eventually with hand controls and steering/braking assist.) I've never had an attendant so I probably entered each phase earlier than if I had someone to help all the time. I'd suggested KD'ers be as independent as possible to relieve the load on their caregivers as much as practical.
email:rheitzman at gmail
Cathy, I think of it as two issues: fatigue and falling. If the person with SBMA is getting fatigued by long walks such as airports, shopping malls, etc., then it may be time for a scooter or powerchair.
If the person with SBMA is falling, or feels as if he might, then it may be time for a cane, ankle-foot orthotic, knee brace, walker, etc. In both cases, a physical therapist or occupational therapist can advise you. Be wary of powerchair salespeople who push their goods too aggressively.
Above all, don't wait until the person has a serious fall, which can result in broken bones.
At the 2011 KDA conference, I met a man who had a very lightweight and portable scooter called a TravelScoot. I didn't have a chance to try it, but it looked to be highly portable and good for airline travel or packing in and out of a car: http://www.travelscoot.com/This message has been edited. Last edited by: Dan B,
Kennedy's Disease Association
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