How Do You Prepare?

[ShakespeareMama]

As I was talking to my fellow limbo landers, it occurred to me to ask this question in hopes I will get many responses from those who are more experienced.

The topic came up when I was explaining that I've been sitting on a skateboard to get around the house because my leg gave out, leaving me unable to walk, almost out of nowhere.

I feel an immense amount of relief as I have ordered a wc and will be more free again, soon.

BUT... how do you prepare?

Looking back, I should have paid more attention to my progression. Having to buy a cane a couple years ago should have woken me up to bigger things.

I want to use the excuses that I have no dx, I was in denial, I was scared... But those excuses have, obviously, done nothing for me...but leave me struggling on a skateboard (yes, yes... you can laugh :P). Lesson learned, there!

The point is, how do I get ready for the unknown? I don't want myself (or others) to be in a situation where I'm completely helpless from not thinking ahead. I never thought I would think this but thank goodness my son has a skateboard! I guess I got lucky.. but it won't be that way for all.

So, experienced folk... What do you suggest? What can you tell us limbo landers, newbies and the not as progressed folk?

Thanks for reading!

[rdmc]

good question, and here's a practical answer. Start going to yard sales

Seriously though, over the years we've built up an arsenal of devices and aids that I may or may not need during and/or after an exacerbation, or due to progression.

I'm sure other folks have suggestions, but for a few...we have canes, a rollator, a wheelchair, etc. You can also pick up things like a shower chair that you might need someday.

The reason I say to garage sale is that you can pick these aids up for pennies on the dollar. Of course you do need a place to store them, so depending on your storage situation could lessen your inventory.

[cosake]

First of all, sorry that you are having such a rough go of it right now. I hope the wc meets all of your needs !

I agree - you might want to stock up on things you might think you'll need; by going to yard sales, flea markets, checking Craigslist, or even posting on FreeCycle.

This could include rollator, shower chair, wheelchairs, scooters, walkers, etc.

I'm amazed at the stuff that people give away when they don't need it anymore !

Also, be thinking about your house and if you make any improvements or remodeling be sure that it could accommodate a wheelchair, for example. We hope to remodel and make a bigger living room in a few years; but it will be built so that a wall could easily go up and make it into a downstairs bedroom if necessary. The new walkway that hubby built is smooth and wide enough for a wheelchair. Hopefully it will be a long time before I need those things, but we are trying think smart and think ahead.

Good luck !

[gomer]

Garage $ales is a great idea, especially before ole man winter hits.

My fam-doc got me a power-chair (ins covered 100%) but I have no ramp or way to go anywhere with it. I got a scooter on my own that rides in my car trunk. I bought a manual W/C for use in the basement (as needed) at a St. Vincent De-Paul store. You can also always check out goodwill or Red Shield etc.

Gomer

[lynnepynne]

Hi Sheakespearesmama,

I wanted to respond to your other thread a few days ago, but didnt, so I will combine that now:

When you wrote about when you know if you need a wheelchair etc. I really wanted to respond that for folks in Limboland (like you are and I also) we have an added aspect.

In August my walking ability degraded to the point of needing a radical solution. I was really just a fews days from getting a wheel chair (but luckily just as I was nearing the end of my rope where I was too weak and uncoordinated to get around anymore, things gradually started getting better enough and I ended up waiting it out).

I felt like if I had an MS diagnosis and went to my dr and said: I need a wheelchair because I cant work or take care of my family right now that would be ok, but as I dont have a diagnosis I really felt like I couldnt really ask for one (after all, who know what's wrong with me?) I know it's silly, but I feel that made me wait longer.

Plus having to explain to friends and to folks at work (even though they saw me dragging myself around and clumsy, weak and unco-ordinated as I was.) And then, also sometimes I am better sometimes worse. I thought people wouldn't "get that" and think I am a hypochondriac or simulant or something. Even though I got a cane years ago and use it regularly a wheel chair is a whole other category...

So in order to answer your question in my totally unqualified opinion: I think the first step in preparing for the future is: accept (with or without a diagnosis) the consideration of whatever tool/medications/services could help you as a perfectly viable option instead of thinking (as I have) that the limitations are easier than asking for the solutions.

If you have the courage to feel like you can ask for that tool/medication/service then you will automatically begin getting prepared for when that moment comes because you will be open and looking for it.

I hope that made sense at all. (was a rough day and my hand is numb and weak and making it hard to type)

Hey, good luck honey!

[cosake]

@ Gomer - you should look into have someone build you a ramp. I know around here they have volunteer days where different companies and groups donate their time to clean, build, and repair homes and facilities in their community. It might also be a good job for a building trades high school group to get involved with.

Just something to think about if you really need a ramp.

[tellnhelen]

Start simple

All of these suggestions are good....I would start by clearing the floor of unnecessary items or other debri. You might also consider rearranging furniture to make path for wc. I also learned a lot from my OT about arranging kitchen so I could continue "cooking" activities. Infact I have yet to purchase a stool w/wheels for the kitchen.

Good Luck. Will pray it's NOT MS but if it is, you are wise to get ready

[gomer]

@ cosake............

I can still walk some. I asked my fam doc, who ordered/rx'd the chair HOW he expected me to do or go anywhere with it. He responded "I didn't". I am walking a little better than I was, still limited, but and now not going down hill like I was.

According to the P/Tist I was over doing it and making things worse (muscle fatigue?). I have learned (the hard way) to balance my activity better and to make use available tools (mobility).

As for around the house I need other things more than a ramp.

Gomer

[Scooter24]

Gomer- Contact the VA, my dad had parkinsons and about 2 weeks after I built him a ramp at his house the VA sent people out to measure and set up for install of an aluminum ramp for free for him. He was not S/C.