Old 03-26-2018, 10:31 PM #1 (permalink)
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Default What keeps you going?

My progression seems to have sped up these last few weeks and is causing havoc with my left hand function and my soft palate function, possibly also my breathing. This is making it hard for me to continue playing my bassoon, which has been my passion and joy for the past 44 years. I can maybe squeeze a few more weeks out of it, but the end is in site. To say Iím depressed about this pending loss is a tremendous understatement.

Previous to this, I lost my ability to ride my bike, ski, and hike ó also strong interests.

I am generally an upbeat person and have never had significant issues with depression. This seems to be more about finding purpose in the face of ongoing loss rather than a depression issue, though itís beyond sad.

I realize I still have a lot going for me in many ways. There is much I can still do. I realize many PALS have more advanced disease and much more loss, but I see that in my future too.

So the question I ask (particularly to those of you who have had more loss) is what keeps you going?
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Old 03-26-2018, 11:06 PM #2 (permalink)
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Default Re: What keeps you going?

I get up every day and figure out what I can still do and I do that. You can't get too far ahead of yourself. We all have a pretty crappy ending to our lives. But it isn't all happening today. I'm still who I was before diagnosis. I know a gentleman who just celebrated 25 years with this disease. He's very advanced in progression. When someone asks how he goes on in this condition. His answer is : I do everything you do, I just do it differently. Attitude goes a long way with this disease. I know another gentleman who lost both legs to peripheral neuropathy, then he lost his fingers to the same thing. Ask him how he's doing and his answer is always: top of the world! with a smile as big as all outdoors. That's cojones.

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Old 03-26-2018, 11:08 PM #3 (permalink)
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Default Re: What keeps you going?

That is a question I think we all have. My diagnosis is newer than yours Karen, but, I too, have always been positive in my life with many interests and activities. There are those on this site that find pleasure in so many things and we need to be able to recognize those things even though they aren’t what we are used to. My true passion is travel, genealogy and cooking (entertaining!). Had nine for dinner this last Friday and I’m exhausted. So what am I doing? Just sent out invites to 40 for a potluck! But in my heart I know that this is the last big hurrah...travel is difficult. Not because I have to drive cause I don’t. But because more than 4 hours in a car takes its toll. Guess we just need to slow down and appreciate those things we can do. My fear is what lies ahead....can’t imagine that so much I take for granted is going to be gone. And not having a time frame for progress is the hardest thing for me. Hopefully you can continue to enjoy your music even when it is impossible to participate with your own instrument. I hope the forum members can offer all of us newbies the strength they show both as PALS and CALS.
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Old 03-27-2018, 02:55 AM #4 (permalink)
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Default Re: What keeps you going?

"I have ALS...... It doesn't have me." It is a statement that I try to live by. I may be limited to what I am able to do, but it doesn't mean that my life should end. I also try to live my life with a little humor, my kids may not think that my dad jokes are any funnier, but I can't disappoint them when they are around.

I also like "Don't look at me and see what I can't do, look at me and see what I can still do. "

I also think that the outcome of this disease is harder on the family and friends of the PALS. I believe that it's easier for us to come to terms with the end result.

I say all of this, 5 years in, and still going,not as strong as I once was. I am also sitting in my power wheelchair that I have been in for three years. I can not move my arms and only limited can I move my legs. Oh and by the way, I type and search the internet with my eyes on my Tobii. But don't feel sorry for me there is always someone that has it worse than me.

I realize that not everyone can be as optimistic as I try, but that is who I am. Don't get me wrong, I do go through time of mourning a loss but I try getting back to being positive.
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Old 03-27-2018, 05:37 AM #5 (permalink)
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Default Re: What keeps you going?

I have struggled with this even though I am very lucky to be slowly progressing.

Last year I decided to look at the things I wanted to do but couldn’t. I then looked to see what things could still be done if I tried an alternate way. That of course still left things that were impossible.

I then asked myself what activities I missed the most. There were 2 things that stood out. So I looked at what I enjoyed about them the most and listed ways I could get some of those things in a different way

I am definitely a work in progress. I am trying not to fight so hard but to work with this. I am not giving up at all. It is finding other ways to get what I need.

Losing your bassoon will be terribly hard I know. I am so sorry.
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Old 03-27-2018, 09:49 AM #6 (permalink)
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Default Re: What keeps you going?

I was diagnosed just a little over three months ago so can't add much about living with this disease (not only enduring it) over the long term.

This forum has been a great help to me in trying to make sense of this new reality. Your posts in particular, Karen, have been very helpful.
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Old 03-27-2018, 10:25 AM #7 (permalink)
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Default Re: What keeps you going?

I think it's all about being grateful for what you can still do.

when I was first diagnosed in 2013, I lost my every day bike rides, golf games, gardening, weight lifting, hiking, etc. With those losses came the social interaction that came with them. To replace my physical outlets, I began swimming every day. My bike, golf, hiking buddies became my swim buddies.

I added more reading time and began writing journals for my kids and grandchildren. I loved sitting outside watching the wildlife in my backyard that I had barely noticed in my busy, before life.

now I am completely quadriplegic, feeding tube dependent, and cannot speak except for a few grunts. Yet I find joy using my eyegaze computer to communicate and learn new things everyday.

this has evolved with my progression. You will too.
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Old 03-27-2018, 10:34 AM #8 (permalink)
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Default Re: What keeps you going?

i have always been plagued with unfailing optimism. my passion before als was golf. i now realize that, because of als, i am saving a hell of a lot of money on green fees!
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Old 03-27-2018, 12:37 PM #9 (permalink)
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Default Re: What keeps you going?

Great answers folks. Nothing I might not have thought of, but it helps to get a little encouragement from folks dealing with similar issues ó especially from those of you further along in this adventure.

Keep the responses coming

When I was really into long-distance bicycling and running, I remember telling a friend I would always find a way to be active. I joked that even if I became quadriplegic, Iíd get into competitive spitting.

The sad irony is that if one becomes quadriplegic from ALS, the spitting muscles are likely to go too. Oh well. Thereís always world-class drooling. Sign me up!
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Old 03-27-2018, 12:51 PM #10 (permalink)
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Default Re: What keeps you going?

Late to the party (nothing new there!)
All you keep me going. And my pamily (family I picked, lol).
Thanks!

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Old 03-27-2018, 02:47 PM #11 (permalink)
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Default Re: What keeps you going?

" i am saving a hell of a lot of money on green fees!"

Me too! I still golf in my mind. Losing my guitar skills was a let down. Playing since I was 10. Interesting how I've found other interests to take the place of losses.
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Old 03-27-2018, 04:10 PM #12 (permalink)
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Default Re: What keeps you going?

Mpnatx;

Sorry for your loss of guitar playing. I'm a CALS for my wife and have been playing guitar for over 50 yrs. Since her diagnosis (12-2017) I've have not had the urge to play my guitar. Maybe it's the emotion part of playing that keeps me away or maybe I'm just too tired. In any event I am going to play the thing tomorrow in response to your post.

Not an entertainer

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Old 03-27-2018, 06:29 PM #13 (permalink)
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Default Re: What keeps you going?

forgot to mention that I went on some fantastic trips with family and friends that first year after diagnosis while I could still walk with cane and then walker. We made great memories and I got to swim and snorkel in warm waters a few more times.

travel now while you can enjoy it more if you have places you want to see.
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Old 03-27-2018, 07:48 PM #14 (permalink)
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Default Re: What keeps you going?

Karen,

Thanks for starting this topic.

I always thought, at 62, I would retire with a great pension, some money in the bank, no debt, and look forward to traveling and remaining active.

I had to give up a lot of the things I did like golf, scuba diving, running, long-distance biking and hiking. The real bummer was I was also diagnosed with Meniere's (although I think it is a misdiagnosis and I really just damaged my vestibular system in an accident) so I couldn't go on cruises anymore. I also loved to cook and garden but my ALS comes with a lot of pain so my back just can't take bending over a stove or pulling weeds.

I think what keeps me going is that I believe everyone has a purpose until they're gone. I've become quite active in pushing for gun control and medical cannabis. I may just head up a class action suit against the IRS because you cannot deduct the medical expenses of prescribed cannabis BUT if a doctor writes a script for a Vitamin, that is deductible. I also think insurance companies should pay for medical cannabis. Another project is to write some letters and write a poem for every book in the Bible.

I also try various diets and supplements to see how or if they affect me. Not just ALS but general health and feeling better.

Voting Donald Trump out of office might just be enough "purpose" to get me to 2020

I've always had a deep need to help others. Today I went to my pain management neuro and there were women in the waiting room who didn't understand the meds they were taking. I was helping them and showing empathy for their pain and suffering.

My brother stays in a condo about 20 minutes from here from November until May. He is 81 and getting feeble. He has Lupus and RA. I know my diagnosis crushed him because I was the one who took care of our mother and father and I always told him I would take care of him. I thought I would. He has two grown daughters and six grown grandchildren, all with college degrees, so he'll get help when he needs it. He just trusted me to keep him out of a nursing home no matter what. This week my project is to make him an Easter basket with top shelf Bourbon and some candy. Maybe, if the energy is there, I'll even bake some cookies for him.

I found that I can usually only do one thing each day. If I go to the movies, it would be too tiring to play cards that night. I went to a concert Friday night and needed all Saturday and half of Sunday to rest.

I like making other people laugh and I like making them think.

I have no idea how I will feel when progression gets worse. I do know that I have the tools to relieve pain and that comforts me.
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Old 03-27-2018, 07:48 PM #15 (permalink)
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Default Re: What keeps you going?

Losing the ability to do things is hard. I can only try to imagine how hard it must be to lose the special gift of playing an instrument professionally at a high level.

As I have lost the ability to do things, I grieve for the loss. But, I also try to pick up new things. There is no limit to the things I don't know and that I can explore.

I can no longer backpack, hike, or climb, but instead we have taken some lengthy trips to Yellowstone where I can motor for endless miles on my wheelchair seeing sights I could have never imagined.

I can no longer ride my bike on Vail mountain in the summer, but I have been able to ride the easier trails in my wheelchair, meeting a whole new set of friends while doing so.

I have also been able to explore some technical areas that my demanding career left no time to explore. I have enjoyed that immensely.

And, while I can no longer play my trombone, I have thoroughly enjoyed going to our local concert series to listen to other magnificent musicians play some of my favorite music.

I am glad to read you have a positive outlook. I think that makes an amazing difference.

Steve
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