What do you do when it comes to full time care?
- Thread starter duplinwino
- Start date
- Status
swi71
Active member
- Joined
- Sep 9, 2007
- Messages
- 57
- Reason
- Loved one DX
- Diagnosis
- 07/2002
- Country
- US
- State
- IL
- City
- Morris
I'm back
Hi Jane, Cindy and all
I'm back from Atlanta. We had a good week and even got to see some awesome fireworks in Atlanta on the 4th.
Thank you for the condolences. My friend was a fighter--determined to raise her kids. Her daughter graduated high school in May. My friend cried so at my daughter's wedding in 2006. She said it was because the wedding was so beautiful, but somehow, as positive as she was, I think she knew that she might not see her own daughter marry.
I need some advice on another question--Gerald is really starting to twist to one side when he is in his wheelchair. His torso muscles seem to be contracting or perhaps spasming. We try to vary his positioning as much as possible, but does there come a time when he should spend more time in a prone position? Will this help contractures and/or spasms?
We do go back to Chicago 7/15 to orthotics and OT.
Thanks.
Sharon
Hi Jane, Cindy and all
I'm back from Atlanta. We had a good week and even got to see some awesome fireworks in Atlanta on the 4th.
Thank you for the condolences. My friend was a fighter--determined to raise her kids. Her daughter graduated high school in May. My friend cried so at my daughter's wedding in 2006. She said it was because the wedding was so beautiful, but somehow, as positive as she was, I think she knew that she might not see her own daughter marry.
I need some advice on another question--Gerald is really starting to twist to one side when he is in his wheelchair. His torso muscles seem to be contracting or perhaps spasming. We try to vary his positioning as much as possible, but does there come a time when he should spend more time in a prone position? Will this help contractures and/or spasms?
We do go back to Chicago 7/15 to orthotics and OT.
Thanks.
Sharon
fiddleplayer51
Distinguished member
- Joined
- Mar 24, 2008
- Messages
- 337
- Reason
- CALS
- Diagnosis
- 03/2008
- Country
- US
- State
- VA
- City
- Harrisonburg
Welcome back, Sharon. Did those teens wear you out? Nice you got to see some good fireworks. The only fireworks we saw here was lightening!
I'm going to let someone else advise you about Gerald's twisting torso. I've yet to have to deal with that. :-( Hope you get some good answers.
All good wishes to you, Sharon. Glad you're back.
Jane
I'm going to let someone else advise you about Gerald's twisting torso. I've yet to have to deal with that. :-( Hope you get some good answers.
All good wishes to you, Sharon. Glad you're back.
Jane
MtPockets
Very helpful member
- Joined
- Jun 1, 2006
- Messages
- 1,544
- Reason
- PALS
- Diagnosis
- 05/2006
- Country
- US
- State
- Ms
- City
- Gulfport
I really have enjoyed following your conversations on this thread.
I always am amazed at the kindness of complete strangers on the forum.
Just wanted to let you know you are a blessing tome, as always.
I always am amazed at the kindness of complete strangers on the forum.
Just wanted to let you know you are a blessing tome, as always.
fiddleplayer51
Distinguished member
- Joined
- Mar 24, 2008
- Messages
- 337
- Reason
- CALS
- Diagnosis
- 03/2008
- Country
- US
- State
- VA
- City
- Harrisonburg
Thanks Mt. This has been a good thread. Everyone pitches in and makes it that way.
You're a blessing, too, Capt. Al.
Have a lovely and peaceful day.
All the best,
Jane
You're a blessing, too, Capt. Al.
Have a lovely and peaceful day.
All the best,
Jane
CindyM
Moderator emeritus
- Joined
- Sep 17, 2006
- Messages
- 3,556
- Reason
- Learn about ALS
- Country
- US
- State
- New England
- City
- Anytown
My torso contracts too, when it is not shaking like I am shivering from cold. Quinine helps the contortions. My docs prescribe it in the form of Qualaquin and I take four 324mg capsules a day. Unitl they prescribed it, I almost had to give up driving.
duplinwino
Distinguished member
- Joined
- Mar 14, 2007
- Messages
- 101
- Reason
- Loved one DX
- Diagnosis
- N/A
- Country
- US
- State
- NC
- City
- Pittsboro
What a wonderful thread this has turned out to be!
I just wanted to share some recent news. I was approved for FMLA and will go out next week. My boss has given me permission to do "occasional" work at home which will hopefully turn into long term work at home status, and has given me access to a laptop! My main goal for going out was to spend the rest of the summer doing things we want while it is still manageable and Brian can enjoy them. So the "occasional" work is set up so I won't use all of my time up while out. Brian confirmed my decision to do this last week when he fell while I wasn't home and couldn't get up. He had to lay in the garage for 30 minutes before I could get there and help him. It's just not safe for him to be home alone anymore, plus his progression is steady here lately and I really think we can get some quality time in this summer. Anyway, enough rambling.
Thanks everyone for sharing your experiences so freely and openly.
I just wanted to share some recent news. I was approved for FMLA and will go out next week. My boss has given me permission to do "occasional" work at home which will hopefully turn into long term work at home status, and has given me access to a laptop! My main goal for going out was to spend the rest of the summer doing things we want while it is still manageable and Brian can enjoy them. So the "occasional" work is set up so I won't use all of my time up while out. Brian confirmed my decision to do this last week when he fell while I wasn't home and couldn't get up. He had to lay in the garage for 30 minutes before I could get there and help him. It's just not safe for him to be home alone anymore, plus his progression is steady here lately and I really think we can get some quality time in this summer. Anyway, enough rambling.
Thanks everyone for sharing your experiences so freely and openly.
sschult
New member
- Joined
- Jun 22, 2008
- Messages
- 7
- Reason
- CALS
- Diagnosis
- 06/2003
- Country
- US
- State
- IL
- City
- Saint Libory
Red Cross Alert System
Hi everyone,
I remember when Alan started falling and we got an alert system through the red cross. It's a system that uses the phone line and the patient pushes a button or switch to call for help. The buttons and switches come in a variety of forms and can be used by most people. It does cost about 30 dollars a month, but worth every penny when you must leave your pal home alone. Alan is doing fine at the nursing home. He is receiving better care than when he was at home.
Take care,
Shari
Hi everyone,
I remember when Alan started falling and we got an alert system through the red cross. It's a system that uses the phone line and the patient pushes a button or switch to call for help. The buttons and switches come in a variety of forms and can be used by most people. It does cost about 30 dollars a month, but worth every penny when you must leave your pal home alone. Alan is doing fine at the nursing home. He is receiving better care than when he was at home.
Take care,
Shari
Al
Moderator emeritus
- Joined
- May 25, 2004
- Messages
- 8,083
- Reason
- PALS
- Diagnosis
- 10/2003
- Country
- CA
- State
- On
- City
- NW of Toronto
Is Gerald getting any range of motion exercises or any other physio? It may help with the twisting.Hi Jane, Cindy and all
I'm back from Atlanta. We had a good week and even got to see some awesome fireworks in Atlanta on the 4th.
Thank you for the condolences. My friend was a fighter--determined to raise her kids. Her daughter graduated high school in May. My friend cried so at my daughter's wedding in 2006. She said it was because the wedding was so beautiful, but somehow, as positive as she was, I think she knew that she might not see her own daughter marry.
I need some advice on another question--Gerald is really starting to twist to one side when he is in his wheelchair. His torso muscles seem to be contracting or perhaps spasming. We try to vary his positioning as much as possible, but does there come a time when he should spend more time in a prone position? Will this help contractures and/or spasms?
We do go back to Chicago 7/15 to orthotics and OT.
Thanks.
Sharon
AL.
swi71
Active member
- Joined
- Sep 9, 2007
- Messages
- 57
- Reason
- Loved one DX
- Diagnosis
- 07/2002
- Country
- US
- State
- IL
- City
- Morris
Al--
No, he isn't. This is a long story, so let me see if I can boil it down. One of my friends showed one of the caregivers how to do the exercises and we also had a PT come in (insurance only allowed a few visits of the PT--he was phenomenal, but I couldn't afford then to pay out of pocket). Anyway, the PT trained two of our caregivers, but we went through 5 in 6 months and the present one has not resumed them, even though he was one of the ones who was originally trained. The OT at Northwestern did not encourage the caregiver to resume them (Gerald is very contracted and she was afraid of pain). When we go to RIC, I can see what they say. However, I'm not sure the caregiver will do them without more instruction and/or being told he must.
I am not strong enough to do some of the exercises and, honestly, I have had to take a real "hands off" approach in Gerald's care. I was blamed by some of the caregivers we lost as being too demanding. I've been told to just "let them do their job." I bite my tongue sometimes when I know I probably shouldn't. I can't afford to lose another caregiver at this point in Gerald's illness. The caregiver does a good job keeping him bathed, fed, and positioned, but his English is sometimes weak. I don't even know how I would approach him to put the exercises back into Gerald's care.
Thanks.
Sharon
No, he isn't. This is a long story, so let me see if I can boil it down. One of my friends showed one of the caregivers how to do the exercises and we also had a PT come in (insurance only allowed a few visits of the PT--he was phenomenal, but I couldn't afford then to pay out of pocket). Anyway, the PT trained two of our caregivers, but we went through 5 in 6 months and the present one has not resumed them, even though he was one of the ones who was originally trained. The OT at Northwestern did not encourage the caregiver to resume them (Gerald is very contracted and she was afraid of pain). When we go to RIC, I can see what they say. However, I'm not sure the caregiver will do them without more instruction and/or being told he must.
I am not strong enough to do some of the exercises and, honestly, I have had to take a real "hands off" approach in Gerald's care. I was blamed by some of the caregivers we lost as being too demanding. I've been told to just "let them do their job." I bite my tongue sometimes when I know I probably shouldn't. I can't afford to lose another caregiver at this point in Gerald's illness. The caregiver does a good job keeping him bathed, fed, and positioned, but his English is sometimes weak. I don't even know how I would approach him to put the exercises back into Gerald's care.
Thanks.
Sharon
swi71
Active member
- Joined
- Sep 9, 2007
- Messages
- 57
- Reason
- Loved one DX
- Diagnosis
- 07/2002
- Country
- US
- State
- IL
- City
- Morris
Hi
Glad you got OK'd to work at home so you can spend time with Brian. One of the best things our kids ever did was to push us into taking the Hawaii trip we had never gotten to take the year after Gerald was diagnosed. (They even had a party for my 50th birthday and our 30th anniversary and asked gently for people to donate for the trip, if they would). Cherish your summer.
Sharon
Glad you got OK'd to work at home so you can spend time with Brian. One of the best things our kids ever did was to push us into taking the Hawaii trip we had never gotten to take the year after Gerald was diagnosed. (They even had a party for my 50th birthday and our 30th anniversary and asked gently for people to donate for the trip, if they would). Cherish your summer.
Sharon
fiddleplayer51
Distinguished member
- Joined
- Mar 24, 2008
- Messages
- 337
- Reason
- CALS
- Diagnosis
- 03/2008
- Country
- US
- State
- VA
- City
- Harrisonburg
Ashley,
This is such good news! I have to say, I admire your ability to take the bull by the horns, figure out what needs to be done, and then do it! You've done it with FMLA and you also did it with ssdi and Medicare. You were so smart to contact those Senators, and you have helped others by posting what steps you took to get your ssdi/Medicare.
Your PALS is so fortunate to have a wife like you and you are a wonderful example for your daughter. One of the most important things we can teach our children is to be pro-active in problem solving.
All the best to you and your family as you go through this illness together.
Jane
This is such good news! I have to say, I admire your ability to take the bull by the horns, figure out what needs to be done, and then do it! You've done it with FMLA and you also did it with ssdi and Medicare. You were so smart to contact those Senators, and you have helped others by posting what steps you took to get your ssdi/Medicare.
Your PALS is so fortunate to have a wife like you and you are a wonderful example for your daughter. One of the most important things we can teach our children is to be pro-active in problem solving.
All the best to you and your family as you go through this illness together.
Jane
fiddleplayer51
Distinguished member
- Joined
- Mar 24, 2008
- Messages
- 337
- Reason
- CALS
- Diagnosis
- 03/2008
- Country
- US
- State
- VA
- City
- Harrisonburg
Thanks for the tip, Shari. There's nothing like peace of mind when we have to be away from our PALS for any period of time.
I'm glad Alan is doing well at the nursing home, and I'm glad that you feel as if he is getting good care. I'm thankful for you that you are on your own now after all you've been through. I really admire your courage in telling us of all the difficulty you experienced and being so open and honest about your true feelings during the pre-nursing home days. Honesty like that helps others who are struggling--it helps them know they're not alone, and it helps them not to feel so guilty when they have feelings such as you described.
Take care and all good wishes,
Jane
I'm glad Alan is doing well at the nursing home, and I'm glad that you feel as if he is getting good care. I'm thankful for you that you are on your own now after all you've been through. I really admire your courage in telling us of all the difficulty you experienced and being so open and honest about your true feelings during the pre-nursing home days. Honesty like that helps others who are struggling--it helps them know they're not alone, and it helps them not to feel so guilty when they have feelings such as you described.
Take care and all good wishes,
Jane
- Status
Similar threads
