retiredmus2010

Dear G., yes it's hard to take. Remember though, none of us is going to live forever. Some go before us and some after. It's life, albeit the hard part for us left behind. I still feel her so I know she's close by. I understand how you feel though. She is an inspiration. I and evidently many people have been influenced for the better. I'm glad to know that you had the good fortune to have met her face to beautiful face! I'm glad to know you, even though it's just here,
Love,
Marta

Hi G! I didn't see your response to me on the 30th. Wow! Quite an ordeal!! I'm glad he's okay Sweets! I had the best birthday ever. I am truly blessed with family and friends and so much more. This situation really puts a whole new light on everything doesn't it? Of course we get down from time to time. That's normal whatever normal is. We just can't stay there. Life is too short and facinating as well even in the depths. Gotta run but know that we're in this together Dear One. xoxoxo!

Just wanted to wish you a Happy Thanksgiving

It seems like it took my dad a long time to find out what he had also. We delt with Hopkins and Univ of Md's ALS clinic. Took two years , they are sopose to be the best. First we thought stroke, then they said Meth something gravix. For 2 years treated him for that. Kind of like process of illimation.

Are you okay? Long time since you've posted last. Let me know so I don't worry about you.
Hugs,
Marta

Hi! Thank you for your memories. I was raised Lutheran and learned it there as well. I can sing two versions and do quite frequently and fondly. The words cause me to refocus. I'm glad we share these memories. Thanks for the note! I hope you're doing well.
Take care and God's blessings on you.
Marta

I will call if possible, Ginger. What time are you available to talk? I have to keep conversations short, due to vocal chords going. Hope you and Tony are accomplishing lots with the VA!

Hi Ginger! How are you guys doing? Have you got lots of things going on? I've missed seeing your name around the forum, and glad to see it today.
God bless and keep you and Tony,
Love--
Ann

HI
That lifting method will work fine, then. There are several ways to transfer--if he can bear weight for a transfer, the arms under his arms is a good way to do it. (Hopefully he still uses a transfer belt!)

Hi Ginger, You do have the books Phil referred to. I have not read Joe Martin's book. Actually, I have trouble holding and turning pages now--but read some very good uplifting books earlier. Amy Carmichael's "Rose from Brier" is my favorite. Hope you and Tony have a very good day--what has he "lost", and what area is being hit presently? God bless you both today.
Hugs and love, Ann

HI. With your husband having no arm usage--yes, your attendant using his arms under husbands arm pits is a safe way to lift. Hopefully, there is some sort of transfer board, too for whenever possible. They are more comfortable than the pressure from total lifts on the armpits. Hope that helps

Hi Ginger! I didn't see the telethon...But that reminds me--Phil said I should make sure you've contacted the MDA/ALS to receive their help as well as their books, which he thinks are pretty good. He doesn't "do" forums, Not yet! I like Mitsumoto's book, for what it's worth. Brooksea had given it a good review, so I ordered it. One more thing I wanted to tell you--as Tony one day loses muscle in his upper trunk, picking him up under the armpits by your caregiver will likely be painful. Anywhere our muscle is atrophied, it seems that we become very pressure sensitive. Hope your day is going splendidly.
My best to Tony, and a big hug for you!
Ann

Hi ginger;
10steps is a nickname I was given by some funny native american friends from college. It ticked me off at the time and when you show irritation, well, it just makes them laugh..."good squaw walks 10 steps behind her warrior". So, it stuck lol. The first indication that anything was amiss with John was Oct. 2009 and was only a slight limp. I finally convinced him to go to a doctor in Jan. 2010, mri, referal to neurologist, more MRIs/tests and by the end of Feb. we were discussing ALS with the neuro. He sent us to Boston and John was officially confirmed ALS there April2010.
How is he now? Hmmmm, he's a quadropelegic, can't speak, neck muscles just about done, lots of difficulty swallowing. He has good and bad days; we do the best we can but he doesn't want to drag this disease out. We have a lot of great neighbors, friend and family though so i feel we really do get plenty of help.
talk to you soon again
cheers !

I saw your post, Ginger--good for you! We do have two moderators, and Al is senior. Some sections are covered by Richard (rcharlton), and there is a site owner, David--who makes somewhat rare appearances. I come on without signing in sometimes if I can't type, yet want to read...forget I'm a visitor and get those messages. Al types with only two fingers, and therefore messages are normally short.

Tony is blessed you are advocating for him. Someone gave advice to tell them ahead of a visit they can stay half of what you're really wanting.

I am in bed all the time now excepting a tough hour up for dinner, Ginger. Love the first quarter hour, but cannot sit--I fold over. That has ended my trips to the deck. We moved from our house in 2/2009 to next door, where Phil was raised--more easily adapted. Glad you can be out together in this weather!

Hi Ginger,
Yes, a CNA is appropriate. I assume your husband is still able to stand up to transfer, thus the concern? As for credentials, ask this man to tell you what he knows about ALS; most know very little, which can cause us problems. Wherever your husband is weakening, his caregiver needs to ease the load--including chatting if fatigue is a problem. Other than all you've mentioned, I am given coffee and a simple breakfast by my aide. However, starting a load of wash for towels /bedding is normal, and Range of Motion! (ROM) is given me twice a week. Massaging feet and hands is also good.

Hospice sends me an aide every day...Keep that info tucked away for future consideration, Ginger.

Best wishes and prayers for the right "fit"!
Ann