handinhand

and believe me being in a power chair is not bad at all. I PROMISE you. It gives a lot of freedom, in fact

we really ought to bombard Kari with questions about travel for us handicapped? Why not make a dream come true?
Will do;
Loads of love to my angel. You have not answered question why you are not eating" more?

Hi Linda,
I'm doing much better these last couple of weeks. I think the low point was my birthday. I've reconnected with some old friends, made a few new ones, started exercising a bit again and generally just tried embracing life. It's a new world for me, but the kids still need raising, the grass needs mowing and I must carry on.

I haven't been on the forum much, I still check in quite often but I have little to say now. I think often of all my friends here and frankly it hurts a little to read of the daily travails so many of you suffer. I talk to Kay Marie every couple of weeks on the phone and Kelly lives just up the road so I stop by there once or twice a month. I try to pitch in a little here and there at local fundraisers and whenever I can on FaceBook but I have to keep a little distance for sanity's sake. And of course I have four kids and a job so my plate is pretty full. Still leaves plenty of time to ask why though....
Hugs, and all the best to you.
Dick

Linda, please don't worry about sounding glum because I know exactly how you feel. I think that many of us here have the same questions about why we are here, why we are going on and what will happen to us. I have those thoughts often but I do wake up each day and I try to forget about what I can't do and focus on what I can do.

My arms and hands are going too and my greatest worry is not being able to do my mouth and throat cleaning myself. I think I could do ok with not being able to walk (or at least as well as I have dealt with not being able to eat, drink or speak) if I could find a good solution to the constant phlem build up in my throat. I had a really good time last night sitting on my covered porch enjoying a spectacular lightning and rain storm. I was warm and dry and for once my throat wasn't bothering me and I was happy to be alive, feeling good and enjoying nature. One day at a time...
Take care,
Barry

Hi Linda, we did mail it a couple of weeks ago and am hoping that you get it soon. Please let me know. How are you doing? I must tell you that when I read your story of not being able to get up when you fell out of bed I was sure empathizing with what you went through. I have found myself on the floor a couple of times and have managed to drag myself up but it is so hard especially when a couple of years ago I was hiking in the mountains. Life changes...

How are you, sweet friend? Still off the bipap. I used it in panic the other day but not for long
AM being fed the most wonderful diet crammed full of dozens of different fruit and veg every day and it has done wonders for my bowel problems and made me feel better. Recommended to all and sundry
My daughter is buying a shop in a village in UK, an olde worlde shoppe in and old world village and she is going to sell all sorts of speciality teas and herbs. Sounds wonderful to me. Wish I could go and share!
Hope you are spending as much time as poss with family to keep your spirits up. I find being alone too long is sure fire way to get depressed.
I love you and have your photo and BArry's by my bedside to make me smile

that sounds such fun andI am so glad yupi have your family to share these things with. Nothing in the world like the love of a family. Glad you sound so much more up. Make sure you get an alarm or walkie talkie so you are never left alone for long, my sweetheart.
11 AM only just got out of bed. Sleep seems the best place to be.............
Loads and loads of love

Ha, ha! LOL, that would be fun. I keep waiting for him to come to Vancouver. I thought Jon Bon Jovi was coming for me this time, but nadda. I guess me and the other 2000 women thought the same thing.

i am so glad you seem better than before you went on holiday.
My brea&thing is not that good now but I have decided not to use the bipap. Apparently the easiest way of dying with this disease is in your sleep from lack of oxygen - peaceful, no stress.
So I am hoping that is what will happen eventually, who knows when - I cannot see the point of deteriorating and deteriorating.
But I nearly choked to death yesterday over a tiny bit of fibre in a soup, so who knows what wonders are in store. that was really scary as I could not breathe at all and in a wheelchair people cannot get at you to do the special manoeuvre...
Besides, I HATE the invasion of the bipap and I honestly never felt I slept well with it.
LOve, hugs and star numbers of kisses coming your way
I fear this will not be the answer you hoped for but it is the truth, my sweet, lovely bird lady. But your life is different. You have more to live for , surrounded by loved and loving ones. So different thinking?

irismarie
YEs, you do need someone with you but I do NOT have someone all the time. That is when I do the transfer alone ballet. I wear nappies for when I just cannot get out of bed at night. Tena Flex which it is possible with a struglle to put on alone, IMpossible with the pantie type. Bit it is amazing what you can carry on doing long after you wold have thought it was impossible - even if it IS exhausting. I have learned to do everything really really sowly. After all, what hurry is there for us to complete anything?
YOu will be home by now and I hope the homecoming was sweet.
love love love

I know nothing about that test...don't need kidneys to fail. Hugs, linda

I put a stay on the chelation cause everyone was telling me it would kill my kidneys.I hope you are having a quality day!BestLove

Hi Lindalove, I'm going for IV Chelation Therapy tomorrow, if the Doc will proceed.No cramp since. My legs are sore from walking 15 minutes. I'm thankful I still can, but still have problems getting out of bed.
Honey, do not worry about anything.They have linked ALS to oxidative stress, according to latest research.BestLove HandinHand was beautiful!So is your granddaughter!

Wouldn't that be fun? You should go on a shopping spree and just go for it. Hugs, Linda

Um, beautiful hats, wigs, and Lou Vattons, feather boas, and rocker chic clothes. Just for a day I would like o be a rock star and hang with him. I wish I could become his personal coach for a living cuz, then, I could quit my day job! Glad I made ya laugh.
Sandra