Stamina/energy

[Arens]

Hi Willow, Do you not have a branch of the ALS Society of Canada near you? We live in BC and the ALS Society of BC is a great organization. They have an equipment loan program that is wonderful. My husband was diagnosed Dec 2010 with ALS and they have provided us with all the equipment we need free of charge. Our extended health would only pay for 2/3s of the cost of his power wheel chair and the ALS Society paid the difference and the only stipulation was that one day when he no longer needs it that I give them the wheelchair for someone else to use. Also to get your extra calories you can sign up for the ENSURE CLUB and they will constantly send you coupons for their Ensure meal replacement drink (get the plus calories one 355 calories in every 235 ml bottle). I signed up on line at their website (and so did our kids and my dad and our friends - the more money saving coupons the better) and they send me $8.00 off in coupons almost every month and of course I get the coupons from our friends and family who signed up as well. My husband no longer takes food by mouth only via his feeding tube but when he was still eating he still drank the ensure because in the first year he lost 60 pounds so he gets about 5 bottles of ensure a day. As for napping he never was a napper but no could not make it thru the day without his 4 hour afternoon nap. Save your energy do whatever you can to make your life easier and contact ALS Society of Canada to find out about equipment and help in your area.

 

[Willow]

I guess my feeling has been that if I don't feel I need help from the ALS Society then I shouldn't bother them at this time. I figure there may be a time in the future that I will need their assistance.
For now....this is a learning curve/experience for me. I have never gone through a lot of these things and I am trying to learn what I can/can not do or able of such.
I do think I will take your advice and at least make more contact with our local ALS society.....although I am diagnosed with LMND....not ALS, so I am not sure they would be of help.