The PSP Chronicles January 2017

[daddyt]

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[easterncedar]

Hi, Tim. I just read your journal with great interest. The medical facility and the thoroughness of your treatment are impressive. I'm very sorry about the loss of your dog. Your eulogy is lovely, and summed up a good dog's life as well as possible. I'm very impressed by your ability to communicate. Writing and keyboarding were early losses for my guy, and his speech is going now.

My guy has the purple feet, too. His aide who comes 4 mornings a week always massages his feet, which helps. The doctor says its neurological, that the signals that regulate the constriction of the blood vessels aren't being properly generated or transmitted.

Thanks for sharing your experience and observations. It definitely helps me to imagine more directly how my dear man must be feeling.

Time to get up and get organized for our weekly trip to the mountains.

Best wishes, ec

[daddyt in reply to easterncedar]

I'm very fortunate to have a wonderful care team, that's one of the advantages with all my doctors being associate professors at the University Hospital Centre. I'll be adding to that group next month when I begin a 3 year research study on FTD (Frontal Temporal Dementia). I'm also fortunate that my writing and typing skills have still been preserved so far... kudos to spell and grammar check. Admittedly though, it takes me an inordinate amount of time to create my thoughts and then put them into words that I hope everyone can understand. I had considered using one those microphone assisted programs, but my voice has been become much more quieter in the last year and a half... maybe I could come up with a telepathic program that would make things a whole lot easier lol. Thank you for kind words regarding Cooper, his cremated remains are back with us at home now and I take some comfort in that. I'm curious as to how many others with PSP are experiencing the issue with purple feet... I'll ask, if can remember lol. I hope that you enjoy trip to the mountains... I can picture the scene in my mind.

Best wishes too, daddyt

[DoreenC]

Read all your wonderful journal. I look forward to the next one. I wish there had been somebody like you writing when my mum was in her earlier stage as it would have been so helpful. You are doing amazingly well to be writing so beautifully. Take care !!

[daddyt in reply to DoreenC]

Thank you. I'm one of the fortunate people where PSP has progressed slowly... I'm under no illusions though. It takes me a great deal of time and effort to write what you read... spell and grammar check are wonderful programs to have. I don't know how many postings you have read, but I always suggest the readers to start at The Beginning that starts on Nov 3/15 up to December 2015. If you're interested in reading further you can simply click on the link that takes you to my blog and continue scroll or page down to the beginning. Many have said that they can identify with the early issues that I wrote about and like most others had no idea about PSP. Thank you again.

[DoreenC]

I did try to read the beginning of your blog but only seemed to be able to get back to Feb 2016. I will try again as I will find it very interesting. My mum who is now very poorly, couldn't explain anything. She only ever said she felt rotten!!! We were guessing all the time especially as we didn't get a correct diagnosis until 2,years ago and she has been unwell for 10 years now. Thank you for your posts I know how hard it must be for you.

[daddyt in reply to DoreenC]

wordpressco900.wordpress.co.... Here's the link, you may have more success this way.

[daddyt in reply to daddyt]

You can scroll down to the bottom and click on next. I think you should be able to copy and save the link and go from there when you want to read further.

[DoreenC in reply to daddyt]

Thank you. I have read up to diagnosis and finding it very informative.

[Hidden]

Dear Daddyt, you do seem to be having great care from your medics. My concern in reading this latest posting of your is your mention of sinemet and dystonia. Perhaps you should read up on the connection between these two and also stiffness. My advice is to take great care with medics. They are not, in most cases, all knowing. Just do a bit of googling yourself.

All the best. Anne

[daddyt in reply to Hidden]

Thank you for your concern. I experienced the dystonia before going on Siminet and the movement disorders specialist is well aware of the side effects and been very careful with prescribed dosage.

[CBP1]

Beautiful writing! Thank you for sharing your journey.