Old 08-20-2017, 04:26 PM #1
Larrytbm's Avatar
Larrytbm Larrytbm is offline
New Member
 
Join Date: 2017
City: Austin
State: Tx
Country: US
Diagnosed: 05/2017
Interest: I am a family member of someone with ALS/MND.
Posts: 96
Larrytbm is on a very distinguished roadLarrytbm is on a very distinguished road
Larrytbm Larrytbm is offline
New Member
Larrytbm's Avatar
Join Date: 2017
City: Austin
State: Tx
Country: US
Diagnosed: 05/2017
Interest: I am a family member of someone with ALS/MND.
Posts: 96
Larrytbm is on a very distinguished roadLarrytbm is on a very distinguished road
Default Hectic 5 weeks - followup

While I haven't posted recently, I have followed many of the threads. All of the posts are so beneficial and at the same time overwhelming. Anyway after another 8 weeks, I'd like to give an update on our situation. The summer heat and my slow healing foot has kept me from overworking and things are piling up. But I decided to get some PT so my foot doesn't become a limitation in the future.

Our RV trip didn't work out. A 2 day trip to get the whole family together and Eileen couldn't handle the thin air (which was my big concern). Just 6 hrs and we had to get down to a lower altitude. We came back home and Eileen used the Trilogy most of the return trip.

Except for the trip, I have quiet time for myself every day. I'm an early riser, up at 5:30 am and with the Trilogy, Eileen sleeps til at least 7 am. I get a cup of coffee and sit on the front porch, my dog roams the property in the dark (with a lighted collar).

Eileen did get a PEG just before the failed trip. She is tolerating Fibersource HN very well. Otherwise she is eating very little (ice cream, shakes, mac and cheese) but is maintaining weight. Compared to so many CALS, my direct support for her is very minimal, just the feedings, driving her to Dr., etc. and other minor help. I know this will change, later rather than sooner I hope.

But there is the cleaning, laundry, dishes, grocery shopping and cooking. Even if the cooking is just for me, I'm probably the worst husband in this area, so lots to learn and adjust to. Then I still have my regular chores, mowing, cars, etc. I have replaced our pedestal bed with a lower bed frame for ease and safety. Still haven't installed the wall mount sink yet, but actually my next priority is adding a handicapped ramp in the garage and probably the front door.

I have spent a lot of time changing the steps and handrail on the RV to make it safer and easier for Eileen to use the RV as long as possible. Next month we will take it on a 3 week volunteer job just 90 miles away, this will be the best opportunity for socialization with friends from around the state that we have known and worked with for years. Our son also installed a passenger seat lift on my truck to solve the height problem.

Anyway, at this point I don't feel stressed ( except for the failed trip) or overworked, yet.
Larrytbm is offline  
Old 08-20-2017, 06:50 PM #2
soonerwife soonerwife is offline
Very Helpful Member
 
Join Date: 2016
City: Cleveland
State: Oklahoma
Country: US
Diagnosed: 10/2015
Interest: I lost a loved one to ALS/MND.
Posts: 1,502
soonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud of
soonerwife soonerwife is offline
Very Helpful Member
Join Date: 2016
City: Cleveland
State: Oklahoma
Country: US
Diagnosed: 10/2015
Interest: I lost a loved one to ALS/MND.
Posts: 1,502
soonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud of
Default Re: Hectic 5 weeks - followup

Sorry to hear about your failed trip. It definitely sounds like a hectic 5 weeks. You trip next month sounds awesome.
soonerwife is offline  
Closed Thread

Tags
back, bed, cals, driving, early, eating, family, foot, healing, hope, ice, lift, peg, problem, ramp, support, trilogy, trip, update


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Hectic 5 weeks, hope it slows down Larrytbm Current Caregivers (CALS) 7 07-09-2017 07:49 AM
Warning...followup to bgp! gooseberry Comedy, Humour and Jokes 17 02-08-2016 01:02 PM
2 weeks ... 4myMom1-7-11 Current Caregivers (CALS) 6 01-22-2011 04:51 PM
Scared and Confused Followup and Question about CIPD testing Tim C Do I Have ALS? Is This ALS? 2 05-05-2009 02:22 PM
Meagher/Pergonal, any followup information pdii General Discussion About ALS/MND 2 08-29-2008 07:59 PM


All times are GMT -5. The time now is 07:10 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016