Old 12-31-2017, 08:54 PM #1 (permalink)
tripete's Avatar
Senior Member
 
Join Date: 2014
City: Lancaster
State: PA
Country: US
Diagnosed: 12/2014
Interest: I have been diagnosed with ALS.
Posts: 789
tripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to behold
tripete tripete is online now
Senior Member
tripete's Avatar
Join Date: 2014
City: Lancaster
State: PA
Country: US
Diagnosed: 12/2014
Interest: I have been diagnosed with ALS.
Posts: 789
tripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to behold
Default Another Mistake...

Friday I took an hour drive (each way) to Ikea with my family. We were out the whole day. I got home and went right to bed everything hurt and I was exhausted. Since then I have very little strength and I can't get enough air to talk hardly at all. What I can say is weak and with a lot of pauses.

I am hoping that with more rest I will recover but am concerned that I WAY over did it and caused a big decline in my breathing. It has always been tough for me to know/see my limitations it is even more difficult now as my mind thinks I can, but my body, well you know...
tripete is online now  
Old 12-31-2017, 09:16 PM #2 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,112
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,112
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Another Mistake...

Oh Pete, so sorry this disease just never stops taking does it!

Make sure you do rest up now and give yourself the best chance at recovering as best you can.

The problem is we just never know where that limit line is drawn until we step over it when things are constantly changing.

Many hugs my friend
affected is online now  
Old 12-31-2017, 10:06 PM #3 (permalink)
swalker's Avatar
Senior Member
 
Join Date: 2014
City: Vail
State: Colorado
Country: US
Diagnosed: 07/2014
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 885
swalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to behold
swalker swalker is offline
Senior Member
swalker's Avatar
Join Date: 2014
City: Vail
State: Colorado
Country: US
Diagnosed: 07/2014
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 885
swalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to behold
Default Re: Another Mistake...

Pete, I so very much understand.

I have great difficulty gauging how much I do and knowing where my limit should be.

I just push and push to achieve whatever goal I have in mind. And, like you, I pay the price. Sometimes for days and sometimes longer.

I have found that when I do too much, I do recover. I think that is because I do it in a wheelchair, so am not really taxing my muscles.

Wishing you the best New Year possible.

Steve
swalker is offline  
Old 12-31-2017, 10:31 PM #4 (permalink)
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,174
KimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud of
KimT KimT is offline
Extremely Helpful Member

Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,174
KimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud ofKimT has much to be proud of
Default Re: Another Mistake...

I'm so sorry, Pete. I know how much family time means to you. I push myself to the max, too. I'm one of the ones who has a lot of pain with this disease. Probably most of it came from falls, car accidents (prior to ALS) and sports. Today I decided to clean all three bathrooms on my hands and knees. I had a hard time getting back up and now my lower back and right knee are throbbing.

Every time I overdo it I pay for days.
KimT is offline  
Old 12-31-2017, 10:39 PM #5 (permalink)
Lscott71's Avatar
New Member
 
Join Date: 2017
City: Fort Worth
State: Texas
Country: US
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 35
Lscott71 is on a distinguished road
Lscott71 Lscott71 is offline
New Member
Lscott71's Avatar
Join Date: 2017
City: Fort Worth
State: Texas
Country: US
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 35
Lscott71 is on a distinguished road
Default Re: Another Mistake...

My husband has bulbar onset and still walks, but recently he went to a church event with family about an hour away from our house. He was gone for about 5 hours. By the time he got home he was so exhausted that he couldn’t talk at all. Didn’t even try. He slept off and on for a couple of days and then seemed to get his energy back.
Lscott71 is offline  
Old 01-01-2018, 08:02 AM #6 (permalink)
tripete's Avatar
Senior Member
 
Join Date: 2014
City: Lancaster
State: PA
Country: US
Diagnosed: 12/2014
Interest: I have been diagnosed with ALS.
Posts: 789
tripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to behold
tripete tripete is online now
Senior Member
tripete's Avatar
Join Date: 2014
City: Lancaster
State: PA
Country: US
Diagnosed: 12/2014
Interest: I have been diagnosed with ALS.
Posts: 789
tripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to behold
Default Re: Another Mistake...

Thank all of you for your support. Steve I am also in my power chair all the time except for transfers. Part of the issue is that my trunk/core is so weak that every bump, turn, or any slightest change jostles me like I have been in a car wreck. It is just part of my regression (progression implies moving forward).
tripete is online now  
Old 01-01-2018, 08:46 AM #7 (permalink)
chally's Avatar
Senior Member
 
Join Date: 2015
City: renick
State: wv.
Country: US
Diagnosed: 02/2015
Interest: I have been diagnosed with ALS.
Posts: 984
chally is a splendid one to beholdchally is a splendid one to beholdchally is a splendid one to beholdchally is a splendid one to beholdchally is a splendid one to beholdchally is a splendid one to beholdchally is a splendid one to behold
chally chally is offline
Senior Member
chally's Avatar
Join Date: 2015
City: renick
State: wv.
Country: US
Diagnosed: 02/2015
Interest: I have been diagnosed with ALS.
Posts: 984
chally is a splendid one to beholdchally is a splendid one to beholdchally is a splendid one to beholdchally is a splendid one to beholdchally is a splendid one to beholdchally is a splendid one to beholdchally is a splendid one to behold
Default Re: Another Mistake...

I feel ya brother I do this often!
We don’t want to just lay down and stop nor should we!

Rest up friend you’ll bounce back and go at it again, it’s what we do till the finish line draws us in.

Happy new year to ya Pete and everyone on the forum.

Love ya
Chally
chally is offline  
Old 01-01-2018, 12:49 PM #8 (permalink)
Member
 
Join Date: 2016
City: Hillsboro
State: OR
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 217
KW1234 is on a very distinguished roadKW1234 is on a very distinguished road
KW1234 KW1234 is offline
Member
Join Date: 2016
City: Hillsboro
State: OR
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 217
KW1234 is on a very distinguished roadKW1234 is on a very distinguished road
Default Re: Another Mistake...

I am with you on every bump taking a pounding. They really should engineer shock absorbers in the chairs.
KW1234 is offline  
Old 01-01-2018, 08:49 PM #9 (permalink)
swalker's Avatar
Senior Member
 
Join Date: 2014
City: Vail
State: Colorado
Country: US
Diagnosed: 07/2014
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 885
swalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to behold
swalker swalker is offline
Senior Member
swalker's Avatar
Join Date: 2014
City: Vail
State: Colorado
Country: US
Diagnosed: 07/2014
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 885
swalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to behold
Default Re: Another Mistake...

Pete, I can only imagine what it is like to have the jostling of the wheelchair cause pain.

For me, it causes fatigue, but not pain. I have found that using lateral thoracic supports dramatically reduces the fatigue.

I like the Permobil lateral thoracic supports for the VS seat in my Permobil C500s VS wheelchair the best.

I find the Stealth lateral thoracic supports for the Corpus 3G seat in my Permobil C500 Corpus 3g are adequate, but not as good as the ones in my VS seat.

The standard thoracic supports in my Permobil C350 Corpus 3G wheelchair are close to useless for me.

If you don't have add-on thoracic supports (not the tear-drop shaped ones that come standard with Permobil wheelchairs), I highly encourage you to investigate them. They have made a great, positive difference in my life.

All my Permobil wheelchairs have shock absorbers. From the factory, they seem to come adjusted for very heavy folks. Adjusting them properly for my weight (covered in the appropriate Permobil base service manual) has really made a difference in comfort for me.

Steve
swalker is offline  
Thanks from
KateEmerson (01-01-2018)
Old 01-01-2018, 09:43 PM #10 (permalink)
Very Helpful Member
 
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
laurel laurel is offline
Very Helpful Member
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
Default Re: Another Mistake...

Pete I am so sorry to read that you are really exhausted after your outing. Slow it down lad, keep doing what you enjoy, but knock it back by half is my two cents. Hubby has CIDP and couldn't have coped with that marathon day that you had. Keep enjoying activities but really think about how long you can participate without exhausting yourself. I hope you get your mojo back soon Pete.

Laurel
laurel is offline  
Old 01-02-2018, 12:53 PM #11 (permalink)
Very Helpful Member
 
Join Date: 2016
City: Pittsburgh
State: PA
Country: US
Diagnosed: 07/2007
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,184
Narrowminded is a splendid one to beholdNarrowminded is a splendid one to beholdNarrowminded is a splendid one to beholdNarrowminded is a splendid one to beholdNarrowminded is a splendid one to beholdNarrowminded is a splendid one to beholdNarrowminded is a splendid one to behold
Narrowminded Narrowminded is offline
Very Helpful Member
Join Date: 2016
City: Pittsburgh
State: PA
Country: US
Diagnosed: 07/2007
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,184
Narrowminded is a splendid one to beholdNarrowminded is a splendid one to beholdNarrowminded is a splendid one to beholdNarrowminded is a splendid one to beholdNarrowminded is a splendid one to beholdNarrowminded is a splendid one to beholdNarrowminded is a splendid one to behold
Default Re: Another Mistake...

Hi Pete. I hope today finds you feeling a bit better. DH, when he could go out, always took several days to recover. Happy New Year!

Hugs,

Sue
Narrowminded is offline  
Old 01-02-2018, 04:43 PM #12 (permalink)
tripete's Avatar
Senior Member
 
Join Date: 2014
City: Lancaster
State: PA
Country: US
Diagnosed: 12/2014
Interest: I have been diagnosed with ALS.
Posts: 789
tripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to behold
tripete tripete is online now
Senior Member
tripete's Avatar
Join Date: 2014
City: Lancaster
State: PA
Country: US
Diagnosed: 12/2014
Interest: I have been diagnosed with ALS.
Posts: 789
tripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to beholdtripete is a splendid one to behold
Default Re: Another Mistake...

I am the same or worse today Hospice is concerned. No noise in lungs just in their words "extremely shallow" breathing.
tripete is online now  
Old 01-02-2018, 05:02 PM #13 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,272
ShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud of
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,272
ShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud of
Default Re: Another Mistake...

Pete, I'm sorry to hear that.

With regards to your lungs, my mother had such congested lungs from pneumonia that there were none of the usual crackly sounds- which confounded her doctor till she got a chest x-ray and he saw why. I am hoping this is your case too and you will improve once treated.
ShiftKicker is offline  
Old 01-02-2018, 05:52 PM #14 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,112
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,112
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Another Mistake...

Dang it Pete - I have been thinking of you and of course was hoping you would report you are just a tiny bit better. Hugs my friend, resting is all you can do now, maybe watch some favourite movies with your family, ones you know well enough that if you nap at times it won't matter xxx
affected is online now  
Old 01-02-2018, 09:29 PM #15 (permalink)
swalker's Avatar
Senior Member
 
Join Date: 2014
City: Vail
State: Colorado
Country: US
Diagnosed: 07/2014
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 885
swalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to behold
swalker swalker is offline
Senior Member
swalker's Avatar
Join Date: 2014
City: Vail
State: Colorado
Country: US
Diagnosed: 07/2014
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 885
swalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to beholdswalker is a splendid one to behold
Default Re: Another Mistake...

Pete, I am very sorry to hear this. I continue praying for you and hope that you will be feeling better soon.

Steve
swalker is offline  
Closed Thread

Tags
bed, breathing, decline, family, mistake


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
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
I did a mistake. Now, very worried about ALS. Bodybuilder Do I Have ALS? Is This ALS? 5 09-15-2014 12:37 PM
Possible mistake on emg tag0620 Do I Have ALS? Is This ALS? 1 03-18-2009 04:19 PM


All times are GMT -5. The time now is 06:02 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