What keeps you going?

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Clearwater AL

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"Reality is home, the longing of our hearts, the object of all our desires."

From "A Course in Miracles."
 

notBrad

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I love to read and watch movies so now that I can no longer play golf and softball ( I used to play 18 holes four days a week and softball three nights a week) and I could always sneak 30 minutes in here and there to play guitar. I was in the best shape of my life. I was a lean 160 pounds now I am a blobish 190. Fortunately my other interests have made up for it, where as I never had enough time to read and we watched movies maybe one day a week. Now I have plenty of time to indulge both of these " alternative" pastimes.

I have gotten back into shooting as it is one of the most handicapped accessible hobbies I have come across. They have mounts that allow you to mount a firearm to a wheelchair, use a smart phone to aim with and there are numerous devices to fire it with - I got a bite actuator.

The other thing that drives me is that I have never been one to quit something that interests me and living definitely falls into that category.

Most importantly having a good and loving wife is a huge reason and help to keep going along with a great support group! I am fortunate to have the friends and family that I have.
 

Clearwater AL

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Brad, glad to hear you have taken up sport/hobby shooting. I was an Olympic Style Competition Pistol Shooter and Range Safety Officer. Even then, many years ago, we had special benches for those in wheel chairs. That was in St. Pete Florida. Again, many years ago. Where I live now has little access for the handicapped.

You may have but I recommend 22 caliber. High Standard is the best 22 target pistol if you are pistol shooting. I shot 22, 38 and 45 in competition. I really enjoyed 22. Don't know if your situation is pistol capable.

Maybe we should discuss this in PMs as some may feel uncomfortable with this topic... if you wish.

Glad you found a hobby. :)
 
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notBrad

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Hey Al,

I used to have a nice collection which I sold when the oil field busted in the early 80's but one of the guns I kept was a Ruger MK1 I bought over thirty years ago because it was so much fun to shoot not to mention it was a tack driver.

In going with your suggestion I will not make any further mention of firearms or shooting except in PM's so as not to offend anyone.

Take care,
Brad
 

Lynn CA

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I'm new to using the forum but this topic hit home and I joined after a bit of looking around several times in recent months. I was diagnosed 5 months ago after losing movement on a month by month basis last year, and slurred speech that began in August. The last month has been very progressive, speech deteriorated a lot more and right leg that was numb is now very numb and had to stop driving. Use a scooter at home and mostly w/chair out, can't go to far in a walker now.

Like all of you, I've had a very active life and I'm really struggling with What Now. I've been volunteering 20 to 30 hours a month till recently and feel I have to back off now, altho I'm going to try and continue our monthly meetings. It's no fun to go and not talk to anyone; I hate the sound of my voice and it is now very soft and I'm aware people are having trouble hearing and understanding me.

I can handle being around my family and my group of friends who know me well but find it very difficult being around others. Plus I really want to live my life and do things and not just turn into a recluse sitting at home. It's never been my style... guess it's a struggle to find out what I can do and then decide to do it.

I actually enjoyed someone's discussion on going shooting and thought, wow, that's something I can do. My son shoots and I know he'd take me if I asked... haven't gone for a long time. Not sure I can pull the trigger but it doesn't hurt to try.

I may just be feeling sorry for myself but it's nice to know you all are out there and I appreciate reading your messages.
 

ShiftKicker

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No need to take hunting and sport to pm's. A separate thread can easily be started. If it's got something in the title to warn those who don't want to read about it, it should be fine. Let me know and I can pull the related comments out of this thread and put them in their own thread in one of the non ALS related subforums.
 

KarenNWendyn

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Welcome Lynn.

My view of hunting and shooting— if it’s done legally and responsibly, fine with me. I think it’s great for people to find something they’re passionate about and pursue it wholeheartedly. With ALS, these things often need to be modified.

I have a baroque concert coming up in a month. There’s a piece I’ve previously always played on the bassoon. I’m struggling with bassoon now, thanks to ALS, but I’ve found I can play the same piece on alto recorder, and with much more facility at this point. I’m practicing recorder now like a fiend and it’s actually sounding pretty good. Gotta make hay while the sun shines :).
 

wishmobbing

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Karen, very cool you found another instrument to join in the concert fun!
 

affected

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Oh Karen the recorder is an amazing instrument!
 

tripete

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Here is something I wrote in the past that i think speaks to "what keeps me going"

When I first started going to my clinic visits they would always ask if I was "depressed". And I would always give them the same answer "of course I am, I have a terminal disease, I watch my body die daily, I watch my loved ones suffer, and this illness screws with my emotions, what the he11 do you expect". That of course lead them to try and "force" me to take anti depressants (please note that I do not judge people who do want them I just don't) etc..

In my opinion they were asking the wrong question. The right question is "what do you want to to with rest of your days and how do you want to be remembered?" For me the answer is that I want to love my family and be remembered for doing so. For me "to love" means to count them as more important than myself. So even though I am so dependent upon my wife for everything I try not to complain, not to upset her, not to ask her for things unless I have no choice, to help by ordering groceries on line, to help her with her work by offering any support I can think of. When I am asked by any one how I am doing I reply by asking how they are.

This takes a lot of effort and a lot of reminding myself of who I want to be, because it is so easy to feel sorry for myself. This illness sucks. In so many ways it seems unfair, and I am sorry for all the losses you are going through and will continue to go through. I use this forum to ask questions and whine at times, but I try to always put those nearest to me first. When the dark thoughts come I remind myself of who I want to be and what I want to be rememberd for. Those thoughts are not consistent with what I want, to let them win is to loose against this nightmare.
 

Chincoteaguer

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Peter;

Your a real trooper. I think attitude is everything and you seem to have a good one.

My wife and I both have a terminal situation as have we all. And we both have life. We choose to focus on life and it really helps.

I'm trying to prepare for the time when life with ALS really sucks. For those who are already there and have posted on this forum your input has helped this preparation.
 

tripete

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i do not beleive that life sucks, ALS YES. but life no. i have received better than what i deserve. ALS sucks in what it causes my loved ones to go through. i am so much more limited in how i can serve them, and that hurts. I wish you and your wife much peace
 

Lynn CA

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Thanks Tripete - and all of you for your wonderful replies. I agree I don't want to be any more of a burden on my family than I have to be and I often try and keep that in mind.

Like you, I want them to remember the Mom they cared about and not how difficult it was to deal with me and handle my issues.

I do feel I need to find some purpose in life to take me through this period I am faced with.

Right now for me what's difficult is not wanting to be around people and have to speak since I hate the sound of my voice... and I've always been a pretty vocal person. That certainly affects what I can find to occupy my time, but I'll work on it! Hopefully, with your good attitude as well!

Sincere thanks to you all.
 

KimT

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Lynn,

I met an attorney from another State who has ALS. She argued cases and her first symptom was trouble speaking. She pushed forward but quickly knew something was wrong because her arguments were not the same because of her voice changes. After she got through the initial shock, she felt like she should stop talking. She kept working for another two years and ended up behind a desk.

Somewhere, during that time, she decided she would live life as best she could and talk as much as she wanted. By that time I could understand about half of what she said. She stopped shutting people out and decided to master voice generation technology. She said that "job" gave her a new purpose.

We don't talk on the phone anymore but she sends me e-mails from her Tablet.

I think the important people never forget who we are regardless of how we sound.
 

KarenNWendyn

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Stephen Hawking was a case in point. He developed ALS and lost his voice before voice banking became available. But he used a speech generator (which gave him an American accent). When people think of Stephen Hawking’s voice, they think of what his speech generator sounded like. It became his “voice”. He accomplished so much with this new voice.
 
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