What brings you joy?

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
382
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
City
Massillon
I was interviewed by second year doctoral PT students several days ago regarding Living with ALS as they try to understand this disease. The students asked me about therapy, adaptive devices, and modifications to my environment. Then one gentleman asked "You told us about your previous activities and lifestyle. But without the ability to perform these activities, what brings you joy in your daily life?

That was a tough question which took me by surprise. It's more than what keeps you busy. So let's give it some thought...especially in a COVID world.

What brings you Joy?
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
382
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
City
Massillon
My list includes:
  • watching the birds at my feeders and identifying them
  • communicating with other PALS in my local ALS Chapter via Zoom, texting, and email
  • helping my son and daughter learn to cook and bake all my favorite recipes
  • walks outside in my power wheelchair mostly on park trails
  • trips with family, friends, or just my husband to small destinations (and great adventures prior to the pandemic)
  • time just talking alone with my son and daughter about all things in life
  • reading a really good book
  • This forum...becoming connected to all of you
  • teaching my children and husband about gardening
More to come...
 

KimT

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Joined
Nov 18, 2014
Messages
3,975
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Enjoying the outdoors (beach, pool, parks)
Doing guided imagery and meditation right before bed
Keeping in touch with a couple of great cousins
Ace (my Toy Fox Terrier)
I belong to a forum called My Merry Christmas. Very upbeat group of people from all around the world.
Audiobooks
ZOOM meetings from my church (we did book club and anti-racist discussions) and YouTube church services
Playing computer games
Listening to music
Writing poetry
My morning chocolate protein shake
Making people laugh.....being the class clown for years gave me good training.
Working on my book.
Really connecting with some great people here. I appreciate you all so much.

Covid has taken some of my favorite things away like massages, pedicures, and facials.
 

Mhs1102

New member
Joined
Apr 6, 2020
Messages
2
Reason
CALS
Diagnosis
04/2020
Country
US
State
NC
City
Raleigh
That is a lovely list. My sister loved her outdoor walks in her power wheelchair. She would see neighbors that she otherwise would not see and stop and visit. Also, it gave her great pleasure that it was hard for us to keep up with her.
 

lisa g

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Apr 17, 2019
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217
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
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FL
City
FORT PIERCE
What brings me joy?
1. Sitting on my front porch in the morning with my coffee watching the birds, squirrels and Sandhill Cranes.
2. Cooking, love to try new vegan recipes
3.Driving myself to an appointment or store alone. Let's me forget the beast for awhile and feel normal.
4. Crocheting
5. Watching my children and grandchildren flourish
6. My husband who takes such good care of me.
7. A good book
8. Sharing time with friends and family

I could go on and on with listing more but a main thing is staying positive and not wallowing in why me..
 

KevinM

Distinguished member
Joined
Mar 30, 2019
Messages
178
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Oh my, the list is much longer than what I have put down. Here’s a start:

* Drugs!
* Whining constantly to my wonderful loving wife, and having her always listen and respond with all the empathy in the world (thankfully I am not at the stage where I have to burden her with assistance...the verdict is still out on whether or not she packs her belongings and drives away early one morning for good when I really need her assistance😊)
* Being so thankful I am still able to go for early morning walks with her and our crazy sheltie Rosie 17 months after diagnosis
* still sleeping well (thanks to Trazodone and THC/CBD oil)
* having our incredible daughter (and her sweet, caring boyfriend) living here in town and always coming over for a weekend dinner
*feeling so honored that she still asks for my thoughts on her grad school papers, and helping whenever I can
* picking lemons and oranges off our citrus trees, and veggies from our garden
* Having a couple of beers and a cigar on the back porch every afternoon (no freaking lectures, please)
* looking at the photos of our incredible trips around the country in our RV from 2013-2019 (always good for a therapeutic cry)
* a day or two without any GI issues or limited muscle/joint aches and pains
* computer games
* old Gunsmoke episodes (don’t ask why...I was a baby when most of those early episodes were made. They make a nice bridge between early evening and my nightly news shows)
* writing a history of my side of the family for my wife and daughter
* listening to old (poor quality) recordings of me playing guitar in various clubs (I was a pretty fair solo acoustic finger style player, if I do say so myself😊)
* being the neighborhood “snake guy” that rescues my more fearful neighbors by relocating (mostly) harmless snakes to the woods. It’s a Florida thing
* still able to walk around our property appreciating the beauty, blooming foliage, and lushness that my wife and I have cultivated over the past 27 years
* bonding with our 17 year old gray tabby Lily. We are both needy and adapting to either age or Increasing infirmities
* filling our bird feeders with sesame seeds (their favorite) and watching the excited stream of chickadees, wrens, finches, sparrows, cardinals (the little bullies), and others fill their little tummies
* giving money to my favorite causes, and to the homeless at stop lights
* having a peaceful plan in place when I have reached that line in the sand (hopefully not for a long time) that is supported by my wife and daughter
* did I mention drugs?

Kevin (presently enjoying an earlier than usual beer on the front porch on this picture perfect 75 degree day in north Florida)
 

nona

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Joined
Oct 1, 2018
Messages
411
Reason
PALS
Diagnosis
02/2015
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State
NH
City
NEW LONDON
Snow, the more the better.
Basketball, especially the Celtics
The Olympics
Visits from my friends and their dogs.
Crossword puzzles
Pictures of my nieces and nephews since they're too far away to visit.
Mac, the kitten.
Getting my bed position just right.
All of you.
A squirt of IPA in my mouth.
Memories of trail runs and golf.
 

KimT

Extremely helpful member
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Joined
Nov 18, 2014
Messages
3,975
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Kevin, I forgot about the drug thing.......added to my list.
Also, going to the rooftop deck and smelling the salt air.
I just did that tonight and someone took my picture. Here it is. No nasty comments on my Covid hair :LOL:
 

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KevinM

Distinguished member
Joined
Mar 30, 2019
Messages
178
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Kim, that is a great picture. You really are quite lovely.

And I’m only half kidding when I ask “could everyone have gotten it wrong about your diagnosis?” 😊
 

Krismn

Member
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Joined
Feb 25, 2020
Messages
17
Reason
Learn about ALS
Diagnosis
01/2020
Country
US
State
WA
City
Puyallup
-Laughing with family and friends
-Morning coffee on the back porch
-My Boston Terrier puppy
-Getting outside on a nice day
-My heated lift recliner
-Finding a good movie or TV series to watch
 

EricInLA

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Oct 20, 2019
Messages
116
Reason
PALS
Diagnosis
01/2020
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US
State
CA
City
Los Angeles
I'm so glad someone started this - I love reading these. Here are other things I love:

-family vacations, especially when we go somewhere the kids have never seen
-walks with wife on the beach (just came back from one)
-Sunday morning bagels, cream cheese, smoked salmon, and strong coffee, with the newspaper (I know, so Jewish)
-the smell of the pine trees when we're in Lake Tahoe
-our raucous, no-holds-barred, un-PC Friday night Shabbat dinners with my full family and lots of wine
-completing a home organization project
-sharing advice and experiences with all of you
-playing fetch with the dog, especially when it involves water
-weekend naps
-watching my kids' excitement when they accomplish something big
-socially distant cocktails on our front lawn with good friends
-hiking through a canyon or forest or along a coastline
-cigars and scotch on my back porch with my Temple buddies, talking politics and sports
-Lakers and Dodgers winning championships, especially the same year!!!!
 

KimT

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Joined
Nov 18, 2014
Messages
3,975
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Now I'm craving bagels, cream cheese, and smoked salmon. Eric, I'd like to be a fly in someone's hair during those Shabbat dinners :ROFLMAO:
 

EricInLA

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Messages
116
Reason
PALS
Diagnosis
01/2020
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US
State
CA
City
Los Angeles
Any time, Kim! We love guest appearances. You'll love the chicken soup
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
382
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
City
Massillon
Here's one or two I will add:
  • Watching the snow fall ❄️
  • Family dinners (which can result in some serious drinking) 🍷
  • Sleep
  • Bagels and cream cheese (lots of cream cheese) Idea copied from Kevin and Kim :love:
OK everyone else...keep those thoughts coming. I know there is JOY in your days. It doesn't have to be the same kinds of things that brought you joy in your "former life".
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
3,975
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Fresh watermelon right off the farm
The sound of the ocean
Beautiful wild flowers
A phone call from a friend
 
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