Suggestions for joy and fun at home?

[2023sm]

Hi all, thanks for your posts so far. My PALS was diagnosed last month and is super depressed. I can't pretend to understand how she is feeling and she has every right to feel any emotion that she feels. And I also understand that an ALS diagnosis is something so devastating that there may not be anything that could ever make her feel better, and that's OK too. I just care about her so much and it breaks my heart to hear her say things like she will never have fun again. She has had rapid progression in both arms only and is most comfortable staying home. Can anyone share things you do at home that make even a tiny difference in your mood/happiness? She has some TV shows that she likes to watch and she used to enjoy playing cards and board games and puzzles.

 

[Tomswife]

Hi. So sorry you are both suffering with this diagnosis. There are people on this forum who have benefitted from eye gaze computer technology. On a nice day, you could encourage her to go out for a wheelchair stroll. The fresh air and nature would benefit. There are easy computer games- cards, scrabble, mind games. Lots of good relaxation and mindfulness videos on you tube or audible.
It is difficult when PALS lose interest in everyday things. But you may just hit on something that sparks interest. My husband is enjoying listening to an audio book.

 

[lgelb]

You might want to have a look at this thread.

 

[Mary2]

Your PALS must still be in shock. Please tell her I am thinking about her and that we are all thinking about her.
Has she been able to find a way to access the Internet and the computer. Perhaps she would like to join us on the Forum. We would love to meet her!

My PALS takes Lexapro, an anti-depressant and this has helped. I take an anti-depressant as well.

Years ago I played some Bridge on the computer and there are other card games on the computer. Some board games are more about making decisions. Like Monopoly for instance. Someone could move the pieces for your PALS while she decides what Real Estate to purchase. There are many new games out there to explore. We tried Lewis and Clark about 5 years ago and never did figure out all the directions!

I hope you have streaming services and not just a cable package. Streaming does open a new world. I haven't watched this yet but a friend just recommended Midsummer Murders on Prime. This is suppose to have good scenery and complicated plots.

We listened to The Rose Code by Kate Quinn which was pretty good. This is historical fiction. I generally have a romance book that I am reading.

My PALS has an eye gaze and can control audio books with this and always has an audio book going and he watches UTube videos and is a news buff.

There are zoom meetings through Meetup now. I did a book group through one for awhile. I also do a spiritual writing group and my PALS did a philosophy/sci-fi meet up for over a year.

This diagnosis is such a shock. I am not surprised she doesn't feel ready to do much at this point in time.

 

[affected]

Definitely it is very early and the shock is still a blanket she is under.

But it is great that you are thinking of her and how you can help make joy again.

Another idea can be something creative you can do together. Some people begin to write, create books of favourite recipes or any kind of compilation. Once she gets past this first shock and can learn to use a computer without her hands you can play online games together. There are lots of card games, word games and board games you can play multi-player online.

If you have similar tastes you can start to listen to audio books together. You can take them slowly and book club them together so it's an active thing, not just a passive thing of reading.

The first thing is defining what she enjoys most, then what she may learn to enjoy a new way alone, and what can become a new activity for you both together.

Even if you start by looking into the accessibility options on the technology you have now for voice activation and things like head pointer mouse or switches. If you learn this with her, it is more fun, less frustrating and a way to discover what else she might be able to do.

 

[MupstateNY]

I'm feeling overwhelmed by the incredible number of portal messages, phone calls, and medical appointments that fill my days. I'm the PALS! But my spouse isn't good at that stuff. Also, he had a deadline yesterday for a project, and he left the work till the last minute. Maddening!

So, I feel that I don't get much time to have fun.

However, Sunday was a warm-ish day and we walked around the neighborhood together. When I get tired, I ride in the transport chair. When I can walk again, he pushes the empty chair until I get tired again.

When we got home, my spouse said, "M, I'm so happy to see you walking." That made my day.

If one or both of you decide to try an SSRI, please make sure you ramp up slowly -- your provider can propose a schedule -- and keep in mind that it doesn't work overnight!

I started an SSRI almost a year ago, before I even knew what ALS was, but I was experiencing weird changes, and it did help. The way I knew it was helping, #1, I got my sense of humor back, and #2, I started singing around the house again after a hiatus.

I still enjoy singing, even though I'm currently croaking a lot! We laugh when that happens.

I remember about a month ago I had a bad cough attack and couldn't breathe. Our 19yo was scared and came and sat next to me on the bed. I reached for his hand, and hey presto, that helped me calm down and be able to breathe again.

 

[KimT]

When I was first diagnosed I invited friends for dinner and games. I had one friend who likes similar shows on Netflix so she’d come over twice a week and we’d watch together. Getting out of the house always made me feel better. When I went to my first support meeting, a group went out for a late lunch after the meeting. Most were already in PWCs at the time. We found a nice restaurant that accommodated all of our challenges.

I take 15 mg. of Remeron for depression. It is great for sleep and doesn’t have some of the side effects of SSRIs. It was the only one I could tolerate. Great for sleep.

I would encourage your PALS to continue friendships and not rely on CALS as only avenue of entertainment or socializing.

Today, I ate breakfast, listened to an hour of an audiobook, read a chapter of another book for tonight’s book club, played some brain games on iPad, returned some emails, worked on a book, ate lunch and spoke with two friends on the phone. This afternoon, I’ll go in the pool, shower, maybe take a nap, then get ready for my Zoom book club.

Accept all the help that is offered. Get things automated as best you can.

 

[Doing My Best]

Even though she's most comfortable at home, I think it would help to get out and about sometimes. If she's not in the mood to be around people, can you take a day trip to someplace like a state or national park, or just a couple hours at a city park, for a walk someplace beautiful? Being outside is a spirit lifter and so is any kind of physical activity. Since it's freezing in your area right now, maybe a museum trip would be a way to get out and see something beautiful. Or things like concerts, theater, or sports events. These things - time in nature, and occasional entertainment and cultural events - have been great for both of us because they take us out of ourselves for a while.

At home, Steve's main activities were playing guitar and fixing or building things in his workshop. He lost both of those almost immediately as his onset was hands and arms. It was rough. But over the months he developed new interests - he's become a big birdwatcher, just in our back yard. We put up seed feeders and hummingbird feeders and he loves seeing who shows up, how the hummingbirds fight each other over feeder access, etc. There's an app called Merlin from the Cornell Ornithology Lab that lets you ID birds by sight or by birdcalls. He also listens to audiobooks, and watches a ton of history and historical dramas on Netflix. And we watch comedies and silly things on YouTube for a laugh.

The ALS diagnosis is such a shock, it's understandable to be overwhelmed and depressed. But there is still a lot of life to live and a lot of fun to have, and you'll both be happy to have memories of the special things you do together during the coming months and years, despite it all.