Doing what I can with an uncertain future - PSP Association

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Doing what I can with an uncertain future

btuma6 profile image
16 Replies

Months ago I posted that I had spent 26 days in the ICU with aspiration pneumonia. I was told it would return since I continue to aspirate. Coupled with that I have restrictive lung disease due to Parkinson presenting a neuro-muscle problem. They tell me at the current rate of decline I have a limited amount of time.

Rather than counting down the days until I die, I'm counting the ways I can make an impact.

Although I'm not near the speaker I once was I have spoke at 18 different support groups in the Portland, Oregon. Now I've had a professional tape a 37 minute discussion and put it on Facebook "Living with an Uncertain Future" facebook.com/groups/2917262...

I don't place this post to promote my video. I get nothing. I post it since all feedback is that it is a needed story for those struggling with the unknown. It has four points from four events that happened in my life. I hope that you will take the time to view it. It will be worth your time

Please share with others

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btuma6 profile image
btuma6
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16 Replies
Bargiepat profile image
Bargiepat

I watched it all and it has given me so much insight into why it is important to live everyday with a purpose.

THANK YOU.......

Patrick.

Ps.

I think your message will stay with me for a long time.

btuma6 profile image
btuma6 in reply to Bargiepat

Thank you for your gracious response. Hopefully it will give others the confidence to watch it.

Marie_14 profile image
Marie_14

I suspect a lot of people don't have a Facebook Account. Could you post a link to your discussion on this site? I would really like to see it.

Marie

btuma6 profile image
btuma6 in reply to Marie_14

Thanks. I am not social media savy enough to realize that. I will add the link as soon as possible.

btuma6 profile image
btuma6

Here is the link facebook.com/groups/2917262...

Marie_14 profile image
Marie_14 in reply to btuma6

Sorry it's only useful if you have a Facebook account which I don't. Do you know how to put a new link onto this site? Or onto YouTube? Then we could all see it. I have no idea how to put a link on here so you are more savvy than I am! ☺

Marie x

btuma6 profile image
btuma6 in reply to Marie_14

Please go to youtube and search "bart tuma lessons from an uncertain future' I can't transfer the link for some reason.

btuma6 profile image
btuma6

I just put it on youtube link youtube.com/watch?v=Mf8--hj...

My son had placed the Facebook location so I know nothing about it

Please let me know if you can reach the YouTube location

Thanks again

btuma6 profile image
btuma6 in reply to btuma6

I tried the link and it didn't work. I will get back to you as soon as possible

youtube.com/watch?v=Mf8--hj...

CBP1 profile image
CBP1

Thank you very much for your inspiration.

CBP1 profile image
CBP1

Thank you for your inspiration. What a wonderful way for you to live! You may want to post the link directly to this page on a new post (not in the thread of this post) It's too good for people not to see.

btuma6 profile image
btuma6 in reply to CBP1

I am still working on it. The video comes up when I leave the link but ofcourse the video doesnt work.

btuma6 profile image
btuma6 in reply to btuma6

I will leave this again as I dont see it. While on youtube search "bart tuma living with an uncertain future" please confirm your success to get in

Marie_14 profile image
Marie_14

Hi there man from Montana! I can see it! Well done you. Are you going to put your link on the Parkinson's page and the MSA page? They say if they can find a drug that halts or even cures Parkinson's it will do the same for people with MSA. My husband had that and PSP and was in remission from Leukaemia. Not a good few years sadly.

Good luck to you and thank you for your video.

Marie x

btuma6 profile image
btuma6 in reply to Marie_14

I'm not sure who to hurt for more- you or him. I'm not sure of your view about after death, but mine is no more pain or anxiety, You and my wife will be left behind to deal with all the present hurdles. Best to you.

I have put it on the Parkinson's site ad will on the MSA. My hope is if people find it valuable enough they will share it with other groups that I don't even know about

Marie_14 profile image
Marie_14

I think like that too. However I want to meet my family again. I am not sure if that will happen but I do hope for it. I know scientists recently decided we know when we die. They were quite shocked by it because it didn't fit with scientific thoughts. I almost said evidence but actually they had no evidence that we didn't know when we died? They ignored people who said they had a near death experience?

Take care of yourself.

Marie x

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