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to Wheel, to Cane or to Limp slowly?


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Old 05-29-2010, 03:09 PM   #1
sgg
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to Wheel, to Cane or to Limp slowly?

This is my first time to the healthBoards, first time posting...a little nervous.

I'm 27, diagnosed w| RR-MS in February, fighting symptoms/lapses for two years - wild ride!

I have brain, spine and optic lesions - so I'm a limper. I limp everywhere, even with my lovely casted orthotics. I've allowed my left leg drop foot and fatigue slowly rule over what I get into day-to-day; I hate that. I'd like to change this, but have some hesitancies which I'm thinking most of you have felt too, so I'm hear to ask for your opinion.

I can limp just about anywhere. I can last at limping for maybe 30 minutes then I hit the tuckered-zone. I recently went out with family to a shopping mecca and found myself stuck in a store, clinging to their lonely chair in the corner dreading when everyone would want to move on to the next shop. I tried like heck to survive with everyone but ended up pooping out after about an hour and finding safety within a cafe while everyone else continued. My family didn't want to continue, mind you, but I felt like a drag so encouraged them to have fun.

I don't feel the need for a wheelchair all the time. Actually, unless I'm exerting more energy than (MS normal) I'm fine and get along just well with the limp. However, for those shopping excursions, city trips, vacations, Disneyland with the nieces, etc is when I feel the want. The need for aide. I finally found a wheelchair online that reflects my age, but their very pricey, and again would I need it that badly? I'm going back to school in two weeks (yay!) but anxious about moving about campus with books, getting to classes on-time and lasting the full day. What should I do?

Here's my thoughts:
Purchase a cheap wheelchair that I feel 'old' in...probably won't use it much.
Purchase an expensive wheelchair I would feel comfortable using every now and then.
Purchase a cane, if I can find one age appropriate.
Or continue what I've been doing.

Anyone out there using a wheelchair? Is using one a cop-out? Does a wheelchair make me a wimp? lol. I know this is ridiculous, but this is from the heart. I have all the feelings of frustration. I'm 27 and feel 90.

Any thoughts? Do insurance companies pay for part of the wheelchair cost? Should I get a cane instead?

It feels wrong to drive up to my school parking spot, walk out of my car, go to the back door and pull out a wheelchair, sit in it and cruise on...does it to you?

Alright, phew that was a big step for me. lol.
Thanks for reading.

Cheers,
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sgg

RR-MS
Dx 02 26 10
Brain Lesions
Spinal Lesions
Optic Neuritis
Copaxone
Intriqued w| Ampyra + would like to try it

Fascinated w| Neuroscience as it relates to Architecture.

 
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Old 05-29-2010, 03:41 PM   #2
MSNik
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Re: to Wheel, to Cane or to Limp slowly?

Hi Sgg. Welcome to healthboards. Dont feel nervous, we are all here for you.

Unfortunatly, I do not have the answer for you which you are asking. I too, have some left drag when I am tired and it becomes more pronounced as the exhuastion continues- but I have found ways NOT to put myself in the circumstances which you describe.

For instance, I refuse to go to a mall. I do all my shopping online, or if necessary and have to get something, run in, go directly to where I need to go, and get out. Usually though, whatever I need can be delivered to my house.

Im in Grad school- I do that online too. My course requires me to go to my University 4 times a year for my collequia, however that is only for 5 days.

I work fulltime. Im in outside sales. I try to schedule my appts first thing in the morning, when my energy is highest and then later in the day. When necessary, i nap in my car along my journey. Also, because im in healthcare related field, I often have people who know what Im up against who will allow me to sit in their A/c office and drink a cold drink to revamp.

I refuse to go to theme parks, because I cannot do it, instead I will take my kids to a water park and sit on the side lines, with my body cool, in the water and watch! I always have my husband around to supervise and take them for jaunts for food/ bathroom, whatever if I cant accompany them.

Now, as to the wheelchair. I dont have one, but almost all of my patients do. My patients are from 10 years old to 105 years old. They are so darned happy to be able to get around, they dont care what anyone thinks about what they look like! You can look into a scooter, which isnt that expensive, but not really known for its safety (They tip over) or you can look for a powerchair, which isnt as "old" as a wheelchair...but mostly you should be rethinking how you see yourself. I realize 27 is young to feel like this, but MS isnt going to get better....and if you need this in order to be at your best, wouldnt you want to do it for YOU?

Are you on any DMDs? I know of two people who were in your situation 6 months ago, both who started Tysabri, both are walking much better right now!
Nikki
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Old 05-29-2010, 03:45 PM   #3
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Re: to Wheel, to Cane or to Limp slowly?



You should limp when you can, roll when you need to, and keep your cane close at hand!

You should have a cane and a power chair at your ready. If you are limping and have foot drop, I would recommend a cane to be used whenever you walk. Falling down is no fun and foot drop can cause you to fall easily.

I say a power chair because if you use a manual wheelchair, you will find that you get worn out quickly. Insurance companies will purchase a power chair for you. Medicare has further restricted power chair prescriptions to the point that if you can walk any you do not qualify.

The drawback to a power chair is that you do not want to use it too much because you need the weight bearing exercise for your legs. A power chair would be good for the times you cycle through rough times.

Have you considered a mobility dog- a service dog? I have used a service dog since 2003. It has made a difference for me because he pulls me along while helping me to maintain my balance. He is also much easier to get in and out of the vehicle!!

Walk, limp, roll, or float....do what you need to do FOR you!!
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Old 05-31-2010, 08:35 AM   #4
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Re: to Wheel, to Cane or to Limp slowly?

welcome to the board I hope you get as much from it as I have. I went from my wife helping me walk to a Cain to a wheel chair (for outings such as Races to the fair or even shopping any thing that I had to go a lot). Back to a Cain now all on my own. I still have my Cain and use it from time to time still have the wheel chair just in case. there is no shame in using things that help us with our mobility. Or even our fatigue which is one of my major symptoms. We have to learn our own limits. If you can go on your own then do so. If you need a Cain then use it. If you need a chair then use that. Only you know how you feel and what you can do or need to do it with. Use all your resources to keep your life a good one.

 
Old 05-31-2010, 02:35 PM   #5
sgg
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Re: to Wheel, to Cane or to Limp slowly?

hello everyone, thank you for replying and sharing your thoughts and stories with me.

i know this is just another thread on another message board. the thought behind my post, more of reality, that soon and even probably now i should be using a cane or wheelchair more often, even incorporated into my daily activities. this has weighted greatly upon my shoulders, its nearly all i have continuously streaming in the back of my mind.

i assume this is normal. as we all live with ms, i'm sure at one time or another these very thoughts, fears, frustrations, anxieties have fallen upon every one of us. i was in a wheelchair do to an attack a little over a year ago, i felt completely exposed, undervalued, broken. i couldn't operate the wheelchair very well. i couldn't open a door. couldn't reach anything. couldn't get into a restroom stall. couldn't drive anywhere. i felt helpless. what was worse was that i was a sponge to everyone's view of me in the wheelchair. i was no longer normal. i was disabled. people pity'd me. i hated every moment of it.

when i finally got the strength i moved out of the wheelchair, to a cane and finally to orthotics on both feet/legs. i've built up this anxiety about the assistive devices. lol.

more importantly, maybe in slight reaction to MSNik's reply above, i still have the mindset, stubborn or not, that i will not alter my life significantly due to this disease. i refuse to shop solely via the internet even though i do for a few items. i refuse to miss out on seeing my nieces enjoy a trip to disneyland this coming august. i refuse to miss attending daily classes in my graduate studies due to being hit with ms. i don't want to miss out on life and keep myself cooped up just because i get tired or feel pain or find embarrassment with going about outdoors. i want to be self-sufficient. i want to be active. i want to live it.

my post i guess originally was to seek comfort that i'm not the only one with these crazy anxieties about getting a cane or wheelchair. i was thinking i might hear that there are wheelchair-errs out there who went through the same feelings as i am now. i'm starting school in one week and all i can think about is 'will i be able to get around campus and to my classes everyday' or 'will i be able to mentally handle the workload.' i'm used to kicking arse in academics. i'm used to pushing myself beyond limits to achieve more than i dreamed. since these last two years of battling ms, undergoing three surgeries, the foot thing, major visual field loss and all the other hoopla's we all go through with ms i lost myself in the process. my confidence has crashed. my motivation has roller-coastered and now after diagnoses, after the weight was lifted i'm now just trying to get back in it. get back into my life and what i loved before things started falling.

so, i appreciate your posts. somewhat surprised that over 60 visits have been made to the thread, but thankful that this is a place to pose a question, even if its infantile and weak and just see if i'm not alone. i can't possibly be the only one with these thoughts towards canes and wheelchairs.

thank you MSJayhawk, i haven't considered a service dog. i have a dog already whose a fantabulous companion but a little too small to be of any balancing effort, actually the opposite. i think maybe its early for me to get a service dog. even though they could probably save my right shoulder and knees from getting banged up all the time - hallways don't like me. =) i know in the future i will eventually purchase a wheelchair, designer or otherwise, just to keep me in the game of life. like you said, i don't want to give up and miss out just because i have ms. your positivity is greatly appreciated and will pay forward i promise you. after diagnosis we must go through a recovery in a way, not just with medications but a soulful cleansing. finally take a breath, free oneself from all the 'what if' fears and face life again; move forward. i'm still in the rockiness of it all but moving in the right direction. you have a strong positive outlook on life which strengthens my spirit. thank you.

as well, unclesam612, i hear you. the cane i have is hospital issue black. a couple months ago i looked into having a wood carver make me one sized to fit and designed with me in mind. it was slightly expensive but allowed me comfort and the ability to express beautiful art that also supports. eventually i believe i'll have both - wheelchair and cane. use them when needed but there just in case. i'd like to get away from i guess what is the hospital issued look. do you have a lovely cane non-hospital like? would you recommend any sites?

above all, i'm grateful for your responses. i encourage those reading and visiting to chime in to. it's helpful and freeing to share as well helpful and comforting to know we're not alone.

thank you.
sgg
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sgg

RR-MS
Dx 02 26 10
Brain Lesions
Spinal Lesions
Optic Neuritis
Copaxone
Intriqued w| Ampyra + would like to try it

Fascinated w| Neuroscience as it relates to Architecture.

 
Old 06-02-2010, 03:49 AM   #6
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Re: to Wheel, to Cane or to Limp slowly?

I know you are really looking long-term here, but a quick note on the mall, grocery store, etc. My daughter broke her foot a couple of years ago and was in a cast with no weight bearing allowed, so she needed crutches. She is a very strong athlete, but the crutches wore her out terribly. We found most malls have free use of a wheelchair and I enjoyed pushing her around and then she would get up when she was in a store and wanted to look around, but it made the trip much, much easier and she lasted alot longer. The grocery store in our area also has a motorized cart, where you can sit and move through the store. It does have a very annoying noise whenever you try to back up.

And finally, I agree with one of the earlier posts about not using a chair too much. I was having quite a difficult time walking due to my thigh simply going numb and then painful as the day wore on. My neuro tried a couple of specialists and finally a neurosurgeon told me she could operate, but it would probably not solve that problem. She sent me for physical therapy and I called around until I found one who had worked with MS patients. He was unbelievable. He taught me exercises that strengthened the other muscles around the pain in my thigh, and tricked my leg into not using the ones around the pain anymore. I am back to running three miles, three times a week. I still have minor pain, but mostly when I have not been doing my exercises.

Good luck and don't give in too easy

 
Old 06-02-2010, 07:48 AM   #7
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Re: to Wheel, to Cane or to Limp slowly?

Quote:
Originally Posted by sgg View Post
more importantly, maybe in slight reaction to MSNik's reply above, i still have the mindset, stubborn or not, that i will not alter my life significantly due to this disease. i refuse to shop solely via the internet even though i do for a few items. i refuse to miss out on seeing my nieces enjoy a trip to disneyland this coming august. i refuse to miss attending daily classes in my graduate studies due to being hit with ms. i don't want to miss out on life and keep myself cooped up just because i get tired or feel pain or find embarrassment with going about outdoors. i want to be self-sufficient. i want to be active. i want to live it.
Hello sgg.

This part of your post brought a smile. You sound like me. I was diagnosed at the age of 24. Even after 25 years I still refuse to stop my life because of this disease. I go to amusement parks (we have been to Disneyland twice), malls (I rarely shop on line) , sightseeing and in general I am still very active. My mobility has been my biggest challenge. I still walk unaided for the most part. However, I have found trekking poles to be a fun and safe way to get around when needed, both inside and outside. My family has told me I walk faster and better when I use them and my endurance is better.

Mobility aids are simply a way to continue living your life to the fullest. I understand, at the age of 27, not wanting to look or feel "old" but it's about safety and not letting this disease stop you from the things you need and want to do.

Best wishes....

 
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