YouTube link for Doing What I Can

[btuma6]

Lets see if this works. Please help me get this outside the limits of this groups.

youtube.com/watch?v=Mf8--hj...(Not working as expected?)

[btuma6]

Looks like back to the drawing board. I'll keep trying

[stanny7]

Think you need to take your video off private?

[btuma]

On youtube if you search " bart tuma lessons from an uncertain future " the presentation should be listed Also I did not mean to make the site private. My son et it up. I will make it public

Please confirm if it works

[Marie_14]

Yes it works! Well done the man from Montana!

Marie x

[azil]

I get an error message saying "an error occurred, please try again later"

[btuma6 in reply to azil]

Go to youtube and search "bart tuma lessons from an uncertain future" sorry for the conclusion

[enjoysalud]

When you posted the video on the front of your PSP posting I could click on the youtube video, without going into your message. I got to see it. WOW!!!!

My son died of PSP, at the age of 55, May 4, 2017. It was after his second bout of aspiration pneumonia. Five weeks after having been released from the hospital for that second bout he died. During that hospital stay for his second bout of pneumonia, he was persuaded to have a feeding tube installed (PEG).

You do not mention that a PEG was suggested to you or that you have one. DO YOU HAVE A FEEDING TUBE (a PEG)?

I live in Los Angeles, San Fernando Valley, and my son lived 10 minutes away in his own home. He was single, never having married. I was his primary caretaker (77 years old).

Your story is miraculous. Thank you for posting it.

[btuma6 in reply to enjoysalud]

My heart goes out to you. No mother should be put in that situation. I pray from now on you have joy more than the past grief.

I do not have a JPEG. A JPEG is needed if nutrition needs are not being meet but they don't stop aspiration for the simple reason that much of the aspiration is generated by the individual in the form of saliva and mucus. At least that is the medical advice I have been given

I have opted not to have a ventilator when that time comes. Living has to be livable.

[enjoysalud in reply to btuma6]

Thank you for your response and kind words of comfort. Yes, I agree with all that you said about the PEG. I was NOT happy when I learned, after the fact, that my son had agreed to a PEG. It was the hospital house MD who did the persuasion, a person not familiar with my son or I doubt with PSP. I did not have the heart (since the decision was made) to discuss it with my son. My daughter said that she thinks that decision gave my son hope.

My dad use to tell me, "Remember Lot's wife, don't look back". Good advice. I am VERY VERY grateful that my son was MY son. He lived a full 55 years. He loved learning, and so had a BA in Music from UCLA, an LLD from UC Berkeley, Boalt Hall (passed the Bar), passed the Calif CPA....however, the love of his life was playing the Bass. His day job was teaching secondary math, and his weekends were filled with gigs.

I will keep you in my prayers.

[aliciamq in reply to enjoysalud]

I will keep you in my prayers enjoysalud. Are you a spanish speaker??? I enjoyed spending time on Facebook last night reading everything PSP en espanol - search paralizis supranuclear progressiva on facebook - I think of your young son often. Be well, Alicia Q.

[enjoysalud in reply to aliciamq]

Thank you, Alicia, I am a poor Spanish speaker. When young my parents and I lived with my grandpa Lupe who spoke no English. My grandparents on my dad's side also spoke no English. NON Spanish speakers hear me and think I am fluent. I use to be, but now........... I understand everything spoken, but hard work to read Spanish, easier in English. I am of Mexican descent on both sides of my parents. My dad born in Mexico. My mom here. If Trump would have his way he'd send us all back to Mexico. Which is O.K. since I am 77 but I would miss my family on this side and my friends.

[btuma6 in reply to enjoysalud]

It should be a crime that you and your family have to live with that thought

[aliciamq in reply to enjoysalud]

My father was born in Detroit soon after my grandfather fetched my grandmother from Durango. My mother is Irish and that side has been here since early 1700's! I know enough Spanish to fool a "none at all" speaker :} My daughter teaches Spanish at a college and I keep in touch with dozens of cousins in Mx. through Facebook so I am well exposed, but speak English. Enjoy your day

[btuma6]

I certainly appreciate and value your prayers.. Unfortunately, I didn't have the foresight to learn Spanish so no.