Another milestone

GlenBrittle · 07-16-2009, 06:16 PM

Well , today started out as a great day.
Got up early , got cleaned up.
My GP made a house call to check on things and take about switching around some of the supplements I take.
I went to work, it was an easy morning , pleasant , and moved quickly.
Time to go home for lunch.

I just out of the door and down I went.
Down I stayed.
I didn't have the strength to pull myself up.
OMFG this is new and I am not liking this.

I was always able to get back up.

Thankfully, one of the people I know from work, heard my cane hit the door and came to my rescue.

I worked half of the afternoon from home and then went for a power nap. 2.5 hours of it. Seems that I have only strained some muscles , no new bruises.

Time to re-evaluate using my walker full time.
I just don't want to drag it in and out of the car.

Question to those who have been down this path: How long were you able to hold off before succumbing to the wheelchair ?

Glen

namita · 07-16-2009, 06:53 PM

Dear Glen,
I am caretaker of my mother and have watched her from being perfectly normal in Feb2006 to be completely ventilator dependent with only eye movement left as of today. I feel taking timely actions to support successive disabilities is key to making the best of the available functional time. It is never too early to take any action to support ones deteriorating abilities. Any delay is just not accepting way things are and you will just land up struggling instead of making yourself comfortable with an aid. Result will be you will continue struggling the better today and tomorrow will be worse than today knowing the disease course . Also by taking help of timely actions ( or even before time) you avoid many unnecessary complications . You were lucky today and thank god for that ...you were unscathed ...imagine if you had broken bones or no one was around to come to your rescue. It is difficult to accept but that is the best you can do along with a prayer in your heart. My mother was resisting walking aids initially as she was embarrased . I used to see her struggle and waste her energies doing something which could have been avoided. Subsequently we started acting ahead of time and i think she has been a very active patient at every stage of her illness till today as she participates in everything happening around her communicating by blinking.
I hope i have not depressed you in any way . My intentions were to let you know that no action is too soon ....better take it in time ...dont waste your energies over something which can be taken care of with an aid ...be it a walking stick, wheelchair, trach ,vent or a PEG . Dont hold ...accept the situation and move ahead with with the best possible solutions. And remember God loves us all and only tries the strongest.
Take care

hopingforcure · 07-16-2009, 08:58 PM

Glen,
you are such a funny guy that you make a fall interesting. You really do have a way with words. I understand completely, just when we think we are dealing with this stuff, something else come's up and bite's us in the butt. (or mouth) Sorry that we have to keep rethinking normal.

CRF8 · 07-16-2009, 09:25 PM

my wife has 2 walkers...

#1 is 24 lbs. and has a basket, foot rests & padded seat, padded handles & doubles as an emergency wheelchair. We take this wherever she goes with a person to help her

#2 is 17 lbs and stays in her SUV, she drags it out when she gets to work and uses it all day

insurance paid for one, I bought the other online for abt $80

we just took a trip from FL to Cancun, the heavy model did well at airports and all over the resort , except beach of course

BethU · 07-16-2009, 09:31 PM

Glen, it's a real shocker the first time you can't get up. Sorry about your epiphany today.

Using the walker full time is as far as I've gotten yet, and I only started out doing that on doctor's orders. I have been amazed to find that it HELPS me ... not just with balance but by enabling me to walk farther and longer. I can hold up my upper body and very weak neck with my arms on the handles, instead of needing my legs to do all the work.

I'm amazed that all these things that I regarded as some kind of admission of weakness or annoyance ... PEG, walker, BiPap ... turn out to make me stronger, freer and much more functional. Don't know when/if I'll get to the chair, but I expect it to have the same effect ... an empowerment, not a defeat.

Take care.

Zaphoon · 07-16-2009, 09:31 PM

Glen,

Sorry for your ground kissing episode! It's scarey when you can't get back up on your own steam. I haven't experienced any falls but I've had my butt planted under a grand piano doing pedal repair and found myself crawling to the bench to pull myself up.

I tell my customers when I'm on the floor that there just isn't any dignified way for me to get back up. It leaves them wondering.

I'd say it is at least time to start catalog shopping for a chair. Find out who has the best deals, coolest colors and racing stripes.

PZ

Al · 07-16-2009, 10:48 PM

I used the walker for about a year before they told me I had to start using the chair. I've been riding more than 2 years.

AL.

joelc · 07-16-2009, 11:08 PM

I went straight from walking to a chair, never had time to try using a walker. It took less than 1 month for the transition. I have never experienced a fall either as I always wanted to be 1 step ahead of problems - so far I have made it! LOL

BarryG · 07-17-2009, 12:01 AM

No falls for me yet, honest! I had to look the ALS rep in the eye today when she asked me that during her visit to our house and say that. Anyway, she and the OT have ordered me a walker and a lift chair from the loaner closet. Zaphoon, I do know what you mean about not being able to get up off of the floor, I sat on the floor to fix my computer and had to claw my way up my desk to get up. Such fun!

I hope that you can stay vertical from now on Glen, at least when you are not trying to be horizontal!

GlenBrittle · 07-17-2009, 04:12 AM

Good Morning Everyone.

Thank You for the kind words and responses.

I will be purchasing my first manual wheelchair today, as the ALS Loan Cabinet is out of the size I need and do not want to purchase anymore.

HERE IS A TIP FOR EVERYONE

Check into your local old age homes.

One of my friends has a relative that works for the homes in my town. He works at the same company as I do , and I learned from him that he just got a new wheelchair for his wife who has MS.

This relative is in charge of the property and maintenance of things at the homes. One of his duties is to try to keep the inventory of wheelchairs down to a minimum. Seems that most families donate the wheelchairs to the home when their loved ones pass on. Some of them were never used. For a donation to the home , I can have my pick. 20 - 25 bucks is the minimum. I will make a larger donation of course.

I am going at lunch time. I will let you know.

Glen

Blackpool · 07-17-2009, 09:39 AM

Good for you Glen, I have had many falls the first being the worst and I had no idea I had Als, I shattered my wrist on Dec 21 2008 had to have an operation and fixator on for 8weeks (bolts and screws etc.) and then a cast.Don't take any chances it is nothing to be ashamed of , if you need glasses you get them , the same with teeth,all it shows is that you have common sense by using a walker or wheelchair.

pvale · 07-17-2009, 11:27 AM

I've fallen so much that when I know I'm going down now, I twist to fall front first. This protects my hips. I don't have enough meat over the joints now to protect them. I banged one of them up pretty good before I learned how to fall. My reflexes are geting so bad now that I don't even get my hands up now. I was taking some pretty good hits to the wrists, but didn't break either one of them. I'm using a walker full time now, in the house, car, and in and out of work. Don't kid youself though, you can still fall with a walker. I know, I managed it. Feet got tangled with each other, walker scooted forward, and down I went. And yes, clambering up on some solid support is not elegant at all. I do use a powered wheelchair at work now, because all the running around I had to do, just wore me out completely when I was using a walker at work. I'm rapidly getting to the point, that when I fall, I'm having a hard time getting back up.

Just be careful everybody, I've accepted the use of aids as a standard part of this now.

Perry Vale

GlenBrittle · 07-17-2009, 12:00 PM

Im back from looking at the wheelchairs.

The biggest chair there was made for a normal elderly person. *sigh*

Most of my adult life , I have enjoyed being the BIG GUY , now , not so much.

My big ass quest for a chair will continue.

Glen

Al · 07-17-2009, 03:34 PM

Glen, have you asked case mgr. or OT at CCAC? Ours down here have chairs I think.

AL.

GlenBrittle · 07-17-2009, 04:12 PM

Yes I have .

My local OT contacted Ottawa ALS who contacted Toronto ALS and there are none available in a 20 x 20 size.

It was after that , I looked into getting one through friends.

Here I sit broken hearted
paid a dime and only farted
next time I will save the dime
BECAUSE I COULD NOT GET TO THE CAN

LMAO !