Here's what I know for sure- (for the newly diagnosed)

[mare]

In my very limited (1 person), unscientific, unqualified, and undocumented "trial", this is what I know for sure:

Without his PWC, (which he has had since Oct. '09) my PALS used his rollator more, so as not to bother me :-(. A transport w/c was used but these are smaller & shorter than the PWC, therefore harder to get out of.
When I would go out for errands, he had to stay upstairs to be near a bathroom. More walking to & from the BR; no lift chair upstairs, so again, harder to get out of chairs.
All of this put more work & strain on his upper body (which is still strong), and he noticed soreness & stiffness in arms, chest, & shoulders. (which he didn't have previously)
He was definitely more fatigued this past week & 1/2; not the extreme fatigue some talk about, but definite noticable fatigue. Not just taking longer naps, but literally "dropping" into a chair- because his legs wouldn't hold him (this doesn't happen when using the PWC).

And then there is the psychological fatigue. Right from the start he felt he "lost his independence": he couldn't go where he wanted when he wanted. He had to ask me to take him to the bathroom- always with an "I'm sorry, can you..." or "would you mind..."
I tried to be as responsive as I could, but he always felt like he was disturbing me.


Let's not even mention the calls to the DME company 2x a day. "Did the part come in yet?", "... have you heard anything yet?" He called it "staying on top of them", I called it nagging! :roll:

Going out- just to go- seemed good for small trips: out to lunch, visiting grandkids, etc.
But, the portable w/c isn't really comfortable to sit in for very long, and so would rather stay in than go out. Not good psychologically!

So, for the newly diagnosed (within a year): you may be thinking I'm not ready for that yet; I'm not giving in, or whatever you say to yourself to justify not using any equipment, the results of my unscientific, unqualified, & undocumented trial are:

Use of a PWC increases:
1) independence
2) energy
3) a feeling of well-being; of being in control
4) of getting to the bathroom on time! ;-)

while it decreases:
1) dependence on others
2) fatigue
3) anxiety
4) soreness in overexerted muscles
5) "never having to say your sorry" :lol:

As Joel has said "prepare early & completely". With all things, get it before you think you need it. It will only help to improve your quality of life! IMHO

p.s.- now, happy as a clam! :-D Sitting out on the patio, with a gin & tonic! :grin:

 

[joelc]

Well said! I don't think anyone will disagree.

I just came in from sitting on the deck getting a sun burn.My wife told me I have quite a glow! LOL.
Glad your weather is good enough to be outside enjoying a drink! That sounds marvelous!

 

[MickeyMouse]

Very well said Marianne! These are exactly the kinds of things Doctors don't have the time to explain, and exactly the kind of things we do need to hear.

Thank you!

 

[hjkangel]

Excellent unqualified report on pwr chair, Mare, lol. We have one for Dad on order and can't wait to get it. He is very uncomfortable in manual chairs since he has lost weight and his spine is prominient and makes most chairs uncomfortable. Here's hoping that the new one will be as impressive as the cost. I could get 2 brand new cars for the cost!

 

[halfin]

Just got back from a trip around the block in my power chair, after dinner. It's really nice out this evening. All the jacaranda trees in bloom over on the next block. So great to still be able to get out on my own.

 

[JeffP]

well said you all i believe the qaulity of life is mainly determined on what resourses we have .thank god for the power chair and all the other gadgets out there to make are life more manageable god bless you all jeff

 

[Al]

I've had my pwc 3 years now and I agree with you 100% mare.

AL.

 

[hopingforcure]

Mare,
With all the unfounded posts of people having a twitch after running five miles lately. This post is the kind worth reading. How helpful and kind, we are some of the best answers to questions that really matter. Thanks for the super important post, as usual you are a great part of what makes this forum amazing.

 

[handinhand]

Thanks mare, very helpful ... Thanks for taking the time to share there thoughts with us. Hugs, Linda

 

[LauraW]

I agree 100%. Thanks, Mare!

 

[Miss]

We are working diligently to get my husband the equipment he needs. I think it will make all the diffence in the world in his attitude. Thanks for sharing.

 

[Tokahfang]

Absolutely! For PLSers a manual wheelchair (a nice sporty rigid) can be a similarly great early choice to enable outdoorsy fun and athletics, as well. Sitting at the top of a mountain in a cool rigid w/c makes you feel stupid for waiting so long around your house without one!

 

[jimth]

Very well said. I started my search last week, as you know from my posting about power chair questions. My medicare starts next month but from what I have read it can take quite awhile to go through the process of getting fitted and receiving the chair, that and my wife and daughter are getting tired of pushing my butt around in the manual chair.

Jim