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Postby Richard1 » Fri Aug 20, 2010 6:27 am

Hi everyone! It is my sincerest hope and desire that all of you are well and happy. This has been one busy summer for me, filled with wonder and disappointment (wonder far exceeding disappointment). For the first time since diagnosed I have experienced significant pain. It came in the form of a condition called "Dorsa Kyphosis" with chronic fractures in the back along the spine as a result of torticollis (retrocollis) and falls which resulted in repeated breaking of the ribs and some trauma to the back. Thankfully, I am feeling much better now and have curbed the impulsivity to try to do things that I can no longer do (with the help of daily reminders and love scoldings). For me, the braces and amiltripiline work! No heavy duty medication needed albeit for a very short period.

Enough of all that. As you know there is much more to life than PSP. The oil spill, initially, deeply saddened me along with many others. Thank God His creation is resilient and recovery seems possible now. I traveled successfully to Manhattan, Kansas to visit my son, and also enjoyed a "fair to middlin" garden harvest of snap beans, corn, squash, cucumbers, and bell pepper. The tomatoes, however, were disappointing for some reason.

Well, I have said a mouthful and y'all need a break. I Pray this day blows a gentle wind of comfort, hope and a brightness that brings energy and joy into your lives!

Richard (with a little help as usual).
Posts: 23
Joined: Sun Oct 05, 2008 9:25 pm
Location: Alabama

Postby eplowman » Fri Aug 20, 2010 10:33 am


SO-o-o-o good to hear from you and get this update -- and, for us, so uplifting to be on the receiving end of such positive outlook, activity, and cheer.

Keep faith with those love scolds and avoid further falls! There are times when momma and the kids know best!

I am planning a trip to East Texas via Alabama in September. It would be great to stop by and say a quick "Hi" en route, if schedules permit.

All the best,

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
Posts: 3659
Joined: Tue May 10, 2005 10:22 pm
Location: USA (Northern Va.)

Postby Robin » Fri Aug 20, 2010 12:32 pm


So good to hear from you! Ruth ("ruthkri"), in particular, will be happy to see your post as she's been asking anyone and everyone if we've heard from you!

Glad to hear you've travelled to see family but very sorry to hear about the pain. Retrocollis causes so many problems in PSP but I'd never heard of dora kyphosis before. Sounds miserable.

Thanks for offering the term "love scoldings." I'll have to remember that!

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Joined: Fri Feb 20, 2004 2:32 am
Location: USA - Northern CA


Postby Richard1 » Fri Aug 20, 2010 1:44 pm

Robin, I erred in spelling. It is "Dorsal Kyphosis".

Ed, it would be a pleasure to see you should you get the opportunity to head this way. Beware of humidity and heat! Though I imagine you get plenty of that too at times.
Posts: 23
Joined: Sun Oct 05, 2008 9:25 pm
Location: Alabama

good to hear from you

Postby ruthkri » Fri Aug 20, 2010 2:36 pm

Dear Richard, I am so glad to hear from you. I naturally thought about you all with the miserable coastal news. I almost called to see if you were o.k. Yes tjere are many unknowns with PSP and you have seemingly weathered so bad ones but your indominable spirit has shined through and carried on for the time being. Her's hoping that there will be some repite, and during that time hopefully some new light shed on some new discovery . I still feel ever the optimist. You take care and remember I am pulling for you. How is your army son doing? Best to Tammy . Love Ruth
wife of Bud who received his golden wings March 4, 2007
And now abideth Faith, Hope and Love and the greatest
of these is Love
Posts: 514
Joined: Fri Jul 14, 2006 4:59 pm
Location: Minneapolis, Minnesota

Hi Ruth!!

Postby Richard1 » Fri Aug 20, 2010 5:14 pm

Ruth, it is so good to speak with you again. I go to the VA Clinic in Pensacola, Florida for my botox injections among other things. Each time we go I have the pleasure of meeting these wonderful young men and women who have been scarred by war. I cannot explain how wonderful some of these kids are. Amputees, blinded, amongst those who have trouble putting what they have been through behind them. They are some of the sweetest and most determined people you could ever hope to come across. I know, in my heart, their trials will somehow bring courage, understanding and dignity to others. They remind me of how fortunate my life has been. They also bring to mind the trials of those whom love them go through too.

With PSP, I know the true trials lie with the caretakers. To me, people like you, Ed, Robin and all the rest who have endured this disease alongside your loved one, your heart, are the true Heroes. I applaud you Ruth. You can bet greater things are on the way. Well served purpose is how I see your gentle soul.
Posts: 23
Joined: Sun Oct 05, 2008 9:25 pm
Location: Alabama

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