PALS ROLL CALL NEW THREAD (PALS ONLY) Wednesday if possible or whenever

lisa g

Active member
Joined
Apr 17, 2019
Messages
46
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
Yesterday my husband and I took a scenic train ride through the Cuyahoga National Forest. Climbing up the steps into the train was a little tricky but worth it. We got to see deer running through the forest, Beaver dams and were treated to an Eagles nest with babies. It was truly a relaxing day without having to think about symptoms
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,465
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Lisa I love those times when you truly forget what is happening. It sounds like a really great day. Did you get any pictures?
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
46
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
My husband did I'll have to get them transferred to me.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,465
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Look forward to seeing them! Sometimes people put them in a separate thread onstories of hope especially if there are more than a couple We all love seeing what PALS are doing!
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
914
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
As if ALS wasn't enough on its own, I now have to take over quarterbacking care for my mother who is in early altzheimer's disease. She lives with my brother who is less than helpful. Other than that I'm going through an entire lifetime of momentos. She has every card she ever got, as well as my father's art supplies and sketch books. He died in 2010. I'm doing what I can to help but I'm going to owe my wife, big time. Long term care is an option, but wait lists are measured in multiple years. Thanks for the opportunity to dump this on someone.
Vincent
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
130
Reason
PALS
Diagnosis
01/2018
Country
US
State
Ohio
Vincent, this is a great place to dump! Lots of folks adding to a long list of RANTS on another thread. If you can't unload somewhere, you will burst! When I start to feel so overwhelmed with my own troubles, I know there are others who need God's strength a little more than me. May you find peace as those of us here send our prayers.
Cathy
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,290
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Vincent,
I can SO relate to what you're going through. My 83-year old brother has dementia. He had it mildly last year. He and his wife have been coming down for Winters for 10 years. Now, they have decided to move down here full time because the little village they live in in upstate NY has no doctors, no hospital, and really nowhere to shop unless you drive 30 minutes South. His wife made the decision based on his weakness and inability to climb stairs. Their older daughter bought them the condo here and it was just steps from where I previously lived post-diagnosis. After I was dx my SIL said they would probably not be coming back (when my brother told her he no longer felt like he could drive.)

This year, everything changed. Both their daughters think living here (about 20 minutes from me) is the best thing for both of them. His wife is a very young 77 and works out three times a week. They have been married 58 years. They have not slept in the same bed for 30 years and he is a hermit. She loves to shop but has no friends. She has superficial friends she knows, both up there and down here but nobody (except me) she can confide in or depend on.

What their daughters don't know or, maybe don't acknowledge, is that I've been financially and physically supporting them for the past 10 years. Not so much this year but, when I was working, I did a lot for them. I drove them to doctors, fixed their TVs and computers, took them on outings, concerts, movies, etc. The SIL is the one who told me I would "beat" ALS.

The SIL is up North now selling their house and all the stuff she doesn't want to send to Florida. Their daughter who bought their condo for them here (they are pretty low income) is with my brother and is finally seeing just how bad he is. She had no clue because she lived five hours away and only saw them a couple of times a year. Their other daughter is in the same little town and it seems she is pushing them to move here because "there are so many more resources."
 

nona

Active member
Joined
Oct 1, 2018
Messages
85
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
Wow, that is stunning!
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
46
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
Another Wednesday and another day of beautiful weather. Yesterday was so nice that my husband and I visited the William McKinley Monument. As you can see from the pictures there is a lot of steps to get into the Monument, 108 to be exact. I am happy to say from the pictures I attached I was able to climb to the top 💪. Coming down proved to be a little trickier. Not sure if its from ALS or my eyes are getting older, my depth perception is off navigating stepping down definitely takes concentration.

Today I'm going to take a break from activity. Going to make dinner for my in laws and just sit and relax. Hope everyone's day goes well.
 

Attachments

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,118
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
Heating up here in Oregon— 101 yesterday in my neck of the woods.
My brother is visiting me from Switzerland. I have taken him on some very fast walks (me pacing him with the pwc) around the neighborhood and to the local coffee house in the cool of the morning.
 

Scotiaspirit

Distinguished member
Joined
Nov 21, 2015
Messages
170
Reason
PALS
Diagnosis
11/2015
Country
CA
State
Nova Scotia
I am still here, progressing slowly, although just took my last vials of Edaravone last Friday. The approval/price controversy is mired in politics. The suggested pricing of $1425 per daily dose is out of reach for most if not all pALS. I exhausted my ability to purchase more from Japan. I guess it is in Mother Nature's hands to what happens now. I will take each day, live it to the fullest. Love you all.
20190609_190318.jpg
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,290
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
It's pretty sad when we can't afford drugs that could slow down progression. I buy one of my drugs from Canada.
Seems like greed trumps compassion.
 
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