So watcha ya'll do for fun?

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dkcarl62

Distinguished member
Joined
Nov 12, 2014
Messages
220
Reason
DX UMND/PLS
Diagnosis
03/2015
Country
US
State
mi
City
Novi
I need inspiration. I need something to look forward to. I'm living my life in the past. The only plans for the future I make now are how to head off the next possible crisis.

So my two biggest limitations are: 1. Neurogenic bladder. Plus the need for assistance in a public bathroom - which is a problem for my husband to take me into the ladies room. 2. Dysarthria makes socializing pretty tough. Plus talking tires me out.

Thoughts?

Deb
 
Deb, from my book of inspiration... Lao Tzo wrote,

"If you are depressed you are living in the Past...

If you are anxious you are living in the Future...

If you are at peace you are living in the Present."

Your difficulties are a burden but with PLS there are many more tomorrows where as those with ALS, their days are somewhat numbered. I always try to remember them. I have tried hard to find peace with, "It is... what it is." Sometimes.
 
What do you or did you like to do? One of our members wanted to ski and he made it happen.
My dad enjoyed going to the movies and watching Netflix. He also enjoyed going to watch his grandkids in their sporting events. Do you like to read? I like to read Nicholas Sparks, Danielle Steele, or John Grishamm.
I don't know a whole lot about them but could you get a catheter inserted so you could be free to go out more? I don't kow how hard that would be or how uncomfortable so just a suggestion.
If you still have mobility with your hands do you like crafts? You could make things for family or friends. Do scrapbooking. Could you go to any live shows? Comedies, etc. Go people watch at a park when weather is permitting? Anything going on at a church that your belong too?
 
First the bladder. If there is no family restroom options then your husband just calls out some warning and in you go to the ladies' room. No one should mind. Have you considered a suprapubic catheter though?

Speech if your hands are ok text to speech?

Kim is right depends on what you want/ like to do. Really look to find something to look forward to A trip, a party, a spa visit. Something fairly big to snap you out of your doldrums. Then look at filling your time with things to like to do and also something - anything where you are helping someone else. We all need to be needed and once MND has taken away your career it can be a huge loss.
If you tell us a bit more maybe we can help with some work arounds
 
Deb, also... believe in tomorrow, We all have to... tomorrow may bring the major break through from the millions of dollars the Ice Bucket Challenge generated for research. There's rumor that a major break through for Alzheimers is just months away that's not a cure but will greatly arrest progression. I have to. Any major break through for ALS will bring in PLS too. Believe in tomorrow.
 
My husband and I used to be very active, both physically and socially. We were in hiking and biking groups. We met in a singles hiking group 6 years ago and have been married for 2 years. My poor dear husband. When we married, we thought my issues were from a lumbar surgery gone awry and had every thought that I would recover. We loved to travel. My husband is a musician, and we loved to organize music parties and go to his gigs. Now when I look at Facebook pictures of the gang we used to hang out with having fun without us, I feel dead already.

Al, I understand what you are saying about those with ALS, but a long life without quality and increasingly burdensome to others is no blessing.

My hands don't work so well; I am 99.9% scooter/PWC bound. Nikki, your catheter suggestion is worth investigating. That just might free us up to travel again.

Thanks to all for your thoughts!

Deb
 
Hi Deb-
That's a tough one. Doubly so if your spasticity is exacerbated by stress.
Socializing puppies and kittens at a local rescue shelter? No need for speaking, lots of adorable animals with zero demand on you other than to be loved. Shelters are run by very dedicated folks who are happy with as much help they can get.

I'm not sure of your abilities in-home, but fostering kittens is low labour except for cleaning of the litter box. Rescue societies usually provide all equipment (and food!) and transport for said kittens. They just need a loving home in which to put them till they are adopted. If you already have pets, this can still be managed, as kittens are even more adoptable if they have first been socialized by other animals.

Yoga. There are many different types of yoga, and so much literature on how helpful it can be for a variety of issues. It can be tailored for any level of ability, even those with extremely limited motion. If you are on FB, let me know and I can send you a link to a group that has some research posted on the benefits of yoga for those with neurological impairment (such as we). It's a great group with a huge amount of information about current research in a variety of subjects pertaining to MND.

I don't know what your level of limb involvement is, but skipper is right, handicrafts are satisfying as well. I can not do the super elaborate lace work I used to, but I gain a great deal of therapy with crochet- blankets only now due to hand fatigue. I am sure my hand dexterity and strength has been prolonged due to this gentle exercise. I'm not exactly the fastest. It took me 3 years (seriously) to complete a blanket when I was able bodied, so I aim for 6 years to complete one now. Perhaps it will be ready when my now teenaged son has his first child. (it better not be sooner!)

If you are a church goer, hosting a study group in your home once weekly or monthly can be good. You do not have to run or facilitate the meeting, just provide space for a group of people. I am in contact with people via email daily, and such things can be arranged via email if you have a church leader who can run the actual study group. The same goes for secular book clubs. You do not have to verbally participate, but there is huge benefit in being even a passive part of such discussions.

I, too, struggle with being out, and the hoops one needs to jump through to be comfortable in public. The added stress can be absolutely daunting. I admire you for looking for something new and fulfilling to do. I also struggle with purpose. I think you are absolutely brave in your search for a new perspective.
 
Trying to stay positive is a biggie for me cause without that I fall completely apart. Been having fun raising $ for ALS research through music shows, runs, haircuts,theatre shows etc anything people want to help me with. I really like zooming around town in my PWC. Remember what you like before ALS and do that only dummies down. Good luck love ya chally
 
Here are some things I do.

1. Read - Before PLS I use to read about 10 books a year from about 6 authors. Now I read about 40-50 books a year from about 80 authors. I mostly read murder mystery, thriller and adventure.

2. TV/Netflix/Amazon Prime - Usually watch a few hours a day.

3. Pool - In the summer I can still get in pool with help from my wife for a few steps.

4. Program - I use to program a lot so I still do that some, take courses and read books on it.

5. I have access to Paratransit services so I use it from time to time to go to parks, restaurants and shopping.
 
Thanks to all for taking the time to write such detailed responses!

I am not bored.

There is more then enough household business to keep me busy. I can spend a whole afternoon searching for fashionable and functional adaptive clothing. I spend time researching stuff of interest that I run across (on FB!) I’m starting to accumulate all the documentation needed to file 2015 taxes. I was a programmer, like you Bill, in a former life, so I can spend an afternoon screwing around with my computer.

I/we're just not having fun.

Fiona, thanks for your astute comments. Yes, stress does exacerbate my spasticity. I had to cancel a family Christmas party at our house because I was overwhelmed by it all and spasticity roared. Fostering is worth considering, but I hesitate to burden my husband with anymore household tasks – feeding and changing litter box. I love yoga. I don’t drive tho, and taking public handicap transportation doesn’t help with my need for bathroom assistance when I am out.

I think the secret for me lies in redefining “fun”. I am resentful that I can’t have the fun of the past. But I have to accept that that ship has sailed. I also need to separate my desire for fun from the loss of purpose in my life. In my former life, I was able to combine the two.

You have all given me very helpful ideas and much to think about!
 
Yes, it sure is a bummer having to give up those fun things. I used to play tennis and dog agility. No more! I can still do some dog obedience on my scooter. Also, if you are at least 55 and can take care of your bladder is due, think of taking some classes for seniors. Wendy
 
I think the secret for me lies in redefining “fun”.

I think you have found the key to the solution.

Like you, I can no longer have fun the way I used to. I spent over 30 years in the software industry, much of it as a hands-on programmer and much of it in executive management. I can no longer effectively do those things. And, believe me, they were very fun. I miss them terribly.

I also can no longer ski on regular skis, snowshoe, backpack, hike, go on long bike rides, etc.

Yet, I have found ways to have fun even with the constraints of my disease. My limitations and interests differ from yours, so what you do for fun will certainly vary from what I do. Here are some of the things I have done for fun.

  1. I ski with a biski.
  2. I take my wheelchair on trails and wear my poor wife out on long hikes.
  3. I have found a place I can go backpacking with my wheelchair and plan to do so this summer.
  4. I was still able to stay up on my bike for short rides last summer. That was a real blessing.
  5. I can no longer carry my heavy wildlife photography setup into the field. Now I put the camera and lens in my lap and use the wheelchair to get to the wildlife. My wife carries the tripod. It is wonderful.
  6. I bought a derelict 4x4 wheelchair with very low possibility of ever working again. A friend and I have it working and I am having a blast on it.
  7. I spend WAY too much time catching up on my friends in this forum
  8. We bought a trailer and I have spent hours on Amazon investigating and buying all the things that will make it feel sort of like a tent when we go camping.
  9. We have travelled quite a bit (all by car). 3 trips to the Grand Canyon, 3 trips to Yellowstone, 2 trips to San Antonio, 1 trip to Santa Fe, 1 trip to Los Angeles.
  10. I sit by a window and watch all the wonderful wildlife. We have numerous birds and squirrels. They have been great. I also saw a turkey, fox, and weasel.
  11. I serve on the board of a non profit counseling center.
  12. I spend way too much time with google investigating a whole host of weird topics. From the history of American presidents to the subtleties of how first order predicate logic can be combined with boolean algebra for some really interesting results.

I do a lot of other things that are not so fun, like dealing with insurance. But since you asked what I do for fun, I will leave those out.

Good luck finding new ways to have fun.

Steve
 
Just to add... in a previous post I wrote about believing in tomorrow. The next day or so below was the headline to an article published on a news website. They are unlocking the secrets of the brain. Alzheimers does have a slight relationship to MNDs. So, maybe it's a mix of believing, hoping and praying.

"Scientists May Have Just Discovered The Key To Halting Alzheimer's."
 
Deb,

The first indication of Darcey's ALS was at a Joe Bonamassa concert in late 2012. We continued to go to one or two concerts each year since. When Darcey was able to use a walker, I'd take her into the lady's restroom at rest stops. No one seemed to mind... with those coming in often using the stall next to us and offering to help if they could. When she could no longer transfer, we took the portable hoyer and the commode with us on our travels. We knew that we could do 5 hour trips, check into a hotel room, set up the commode and be good for another 5 hours. And she'd wear a Depends or Tena so that she didn't need to worry if we didn't make it in time. To see that smile of hers... sitting in a concert that she otherwise might not have attended... made it so very worth the effort (for both of us).

Darcey was originally misdiagnosed with a recoverable disease. We put life on hold for over a year waiting to get better. Once we understood that we were dealing with ALS, we immediately began to live again. This last Saturday, we went to what could very well be Darcey's last Joe Bonamassa concert. We didn't do the normal Meet & Greet... instead giving away 4 such passes for others to have their first time opportunity to meet Joe. But we watched them as they waited in line... and shared in their excitement upon exiting the M&G. It could have been a sad event... as it was the very same venue that we first saw Joe perform at in 2010. But Darcey was excited for how much we've done, for introducing others to something we've enjoyed so much [together] these last several years and for (as Darcey put it) completing the circle. I guess what I'm hoping to convey is that ALS isn't stopping you from doing any number of things you might still like to do. You'll just need to do it a little differently. And we can't wait to hear what it is that you elect to do next.

Our best to you and yours...

Jim & Darcey
 
This last Christmas I painted glass ornaments and made beaded wire hangers for them. I painted and beaded polymer clay ornaments made with cookie cutters, (cats and hearts). The paint is called Alcohol Ink. Really nice and easy to work with. I gave them as gifts and the clay ornaments I used as tags on gift wrapped packages.

I work 4 to 5 hours daily except I'm in lending and not working much right now. And the last loan I closed ended up stressful. I want to go to work to get out of the house but I don't really want to work. I am afraid of the stress which is almost always a part of getting a loan, I shower, dress up and show up. Seeing the agents hustling around the office can get me down because that's not me anymore. But it use to be. Multi tasking was my thing. The more I did the more I could do. Now it takes me forever to accomplish something. I have a "to do" list and it feels good to check off the completed items, however long it takes.

I can still clean a lot of my house like sinks, toilets, dishes, counters, laundry. Keeping our home clean has always been a labor of love along with decorating it, painting furniture and buying garage sale "treasures" and changing them with paint or rust and patina finishes. I made concrete leafs and a concrete bench for our gardens. I was always creating. Not so much anymore. I do spend hours on Youtube watching these crafters and watercolor artists. I find I have many supplies but can't seem to start on a project. I am looking for my niche. I am contemplating using albums made from embellished manila folders and giving them to our local no kill to hand out with each adopted cat and dog. They would hold pertinent information regarding care and pockets for record keeping, i.e. vet bills, vaccination log etc. etc. The local no kill has stacks of paperwork and no organization so I have considered organizing them, doing the work from my home or office. We have our share of dogs and cats and can't bear to see an animal in need. It breaks my heart so I don't want to work in the shelter.

I use to play tennis at least 4 times a week. I ran and danced. I gardened and hit the estate and garage sales on weekends. I sang with the locale chorale and a quartet and octet. I was active putting on our concerts. Can't do any of these activities anymore. I walk a lot using my rollator and glad I can still do that. I have my husband and our pets, neighbors and friends, co-workers and family (except my two sisters :)).

That being said, is it no wonder that it is difficult to reinvent our lives considering how much we all did? We all seem to have in common an energy and enthusiasm for life. 99% of the time I feel absolutely cheated. I can't dwell on it or I won't be able to get out of bed. This has changed me. And not for the better. I don't think I will ever be able to accept this. But for now it hasn't completely won. Just severely kicking my butt.
Chris
 
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