The PSP Chronicles April 2017

[daddyt]

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[easterncedar]

Awake in the wee smalls, I enjoyed your post immensely, Tim, although so sorry for your struggles. I appreciate your philosophical outlook and poetic expression, as well as your frankness and the details about your physical condition. I particularly liked reading about your weekend in NF, my home ground. It has changed, I know! But the falls roar on. I've been in Maine for 30 years, but I am from Niagara Falls.

Thanks for the writing. Best wishes, love and peace, ec

[enzo501 in reply to easterncedar]

Eastern cedar ...I as well was born and raised in NF have my 50th HS reunion this summer ...actually Sept... been in Co for 33 yrs grew up by the Market ... 17th st school then Gaskill and NFHS...really miss Violas ...are you born on US or Can. side ?...currently caretaking wife of 46 yrs.....i'm certain our posts have crossed...jeff

[easterncedar in reply to enzo501]

Viola's! - Hey, homie! Nice to hear from you! US side. North Junior, then NFHS, '75. My eldest sister and my brother would have been in high school with you, I think. My mother and I go to the market still, when I visit during the summer. I live for Niagara County peaches. Maine is wonderful, but I never knew how rare a good peach was until I left home.

[enzo501 in reply to easterncedar]

You must be a Deveaux girl...Lewiston peach fest. my e-mail is [e-mail]...my name is Jeff Walker have a sis Maryanne ..about your age 55 ? I don't get back much ...was meeting buddies in Vegas ..you know "the older you get the better you were "buddies . The guy that owns the Stadium grill (DeFazio) and Mike Marrone are probably my best buds in NF.They come to Denver and we go to the "rocks " to listen to a good concert . I live close to Morrison ...in Littleton ....If your ok with it tell me your last name (maidon)...NF was such a small ...Big town 100k and everyone knew everyone ...I lived by Fortunas delux restaurant

woodlawn and 20th ...now the GHETTO Dad was last ...passed in 2000 been back like 3 times since ..carry a gun to go out in the neighbor hood ....Trusellos is back great bread ...right down off market ...19th and elmwood...same location ...I love remenissing about the old NF ...when it was a great place to grow up ...

[easterncedar in reply to enzo501]

Deveaux it is. We still go to Fortuna's now and then. It never seems to change.

[enzo501 in reply to easterncedar]

ec...tell me about how far you are in this health crises we are dealing with ...the golden yrs ...right!

[easterncedar in reply to enzo501]

Six years in since diagnosis. Winding down now.

[enzo501 in reply to easterncedar]

I'm in about the same situation .Wife barely mobile with my help. Have walkers and chair but she 's not quite there yet. Vision going ..she still reads a bit from Kindle ...big letters. still eats well ,some throat probs but still bearable, I feed her . NO peg for her ..she signed off months ago.Balance is bad , and some pain in right lower leg ...She takes very little medication as all perscribed drugs seem to make movement and stability worse than the alternative causes .takes small dose 20mg of prozac once a day and mertrazopine 7 1/2 mg to sleep at night and sleeps well . We walk about 1/4 to 1/2 miles at park everyday it takes about 45 mins ..wih frequent stops ...she has a brace for right leg as it turns out ....wears it to walk ....about 2 hrs a day

[Lee2584 in reply to enzo501]

Mike Marrone, the Loft guy?

[enzo501 in reply to Lee2584]

M Marrone the Pharmysist NFHS class of 65

[enzo501 in reply to Lee2584]

Lee are you from NF as well?

[Lee2584 in reply to enzo501]

No, I'm from northern California but now living in Texas south of Austin.

[enzo501 in reply to Lee2584]

Lots of Mike Marrones thought we had the trifecta of Niagara falls people as easterncedar is a native as I am . Just found that out yesterday ...small world . I have lived in Tx...Clear Lake for 3 yrs ..its by Nasa /Houston.Late 80's.... Good luck w/your situation ...peace/out...jeff

[Bargiepat]

This paragraph in your blog I found particularly relevant to how I feel sometimes...... even though I am only at the beginning of my journey.

'I have never truly lingered upon my own mortality although I must admit it has given me pause on more than one occasion. I’ve made my peace with God long ago and I am comfortable with that however, like most, I am in no hurry to go. In fact, putting off the inevitable is just fine by me. Yet, even with that peace there is some fear, of what I do not really know but it is there. If pressed, I would probably say that it has more to do with my family and their future without me. But what I’m finding as my PSP and dementia progresses is that I have a type of indifference to my own death. I know it is coming sooner than later but, at least for now, I don’t dread it. I’m not depressed about it, I just recognize it as fact and there it is, so be it. Perhaps I feel this way because somewhere in my mind I think I won’t really know what’s happening by then anyway.'

Cheers,

Patrick

[daddyt in reply to Bargiepat]

The paragraph you spoke of is quite poignant. I can't take all the credit for it though, I remember hearing a conversation or may have even read something similar... don't quite remember. That's the problem with frontal temporal dementia... it messes with my short term memory.

[Marie_14]

Tim

Thank you so much for telling us what is happening in your life. The good and the not so good.

I am delighted you met up with Mike. I never realised how good looking you boh are! How does Trish fight them off? Glad you all had a good time. I was tired just reading about itI!

Sorry that things appear to be getting worse for you. It's so tragic that so many lovely people get these awful conditions.

That idea about the ice cream is great..but..how about doing it to get some publicity for PSP?

Lots of love to you and I will be saying a prayer for you and Trish. I admire you so much. By the way I am glad that you managed to get to your Granddaughter's communion. Something she will always remember.

Marie x

[daddyt in reply to Marie_14]

Thank you for your kind words. The ice cream idea to raise awareness to PSP and CBD begins today May 1st and goes to May 14th. I've tried to copy the link here... no luck.

For the month of May we are raising awareness by eating ice cream, this event was inspired by Tim!

Please share ice cream with your loved ones and post pictures!

Today we will be at the Truckfest, Peterborough, UK - if you spot us please say hello and we'll buy you an Ice cream!...

See More

MAY

1

Going

Ice Cream Challenge for PSP and CBD Awareness

May 1 - May 14 · Worldwide. You can probably find more information from PSPA Warwickshire on Facebook or Google for that matter. If you go to YouTube.com and type in Two for DQ it will bring you to the video I mentioned. I've contacted the region's leading radio station and posted the video on their FB page... waiting to see what they'll do with it.

So in support of #IceCreamsForPSP go and have yourself an ice cream cone and be sure you get a picture of it to post on the site. Everyone deserves an ice cream (:

[easterncedar in reply to daddyt]

Great idea! Ice cream is good for everything!

[daddyt in reply to easterncedar]

Ice Cream is good for everything. In my books... it's another food group (: