When Kathryn Leigh Scott's husband was diagnosed with progressive supranuclear palsy (PSP), a neurological disease for which there is (so far) no cure, it was a devastating time for both of them, not least because so little is known about the cause or treatment of a disease that affects some 20,000 Americans, a number similar to that of Lou Gehrig’s disease (ALS). Last Dance at the Savoy is both a personal story about Scott's husband, Geoff Miller, the founding editor of Los Angeles magazine, who lived life fully despite having a terminal illness, and a sharing of her insights on dealing with the day-to-day issues of caring for someone with a progressive neurological condition. Scott "often yearned for someone to figuratively take my hand and walk with me through the difficult times; I hope through this book I can reach out to you with encouragement and practical advice." Last Dance at the Savoy includes a resource guide that provides facts about prime-of-life diseases; contact information for support organizations, research studies and clinical trials; where to find handicap products and equipment; and recommended caregiving publications and family conferences. Contains a foreword by Yvette Bordelon, MD, PhD, a neurologist at UCLA whose clinical work involves the diagnosis and treatment of movement disorders. A percentage of royalties from Last Dance at the Savoy are donated to CurePSP.
Add on to my previous post.: When Kathryn... - PSP Association
Add on to my previous post.
Just ordered it on amazon, can't be delivered until Saturday , thank you, can't wait to read it x
Bought my copy with one click yesterday and it arrived today. I've read the forward and the first chapter and have already cried. It's very well written and I know exactly what she's talking about. I think it is going to be a good but emotional read.
Thanks for telling us about it.
X
Nanna I just one clicked mine as well so I should get it tomorrow. She had a book signing here but I found out too late to attend. But I only bought a paperback-kind of tacky to sign that! I think it will help bring more attention to the disease. Look at what Michael J. Fox has done for Parkinson's research. Someone else on here mentioned it before me but I did not see it until afterwards. I figured if I missed her post maybe others had so I left mine up. Who am I kidding. I would never be able how to delete a post from here-HA!
Happy tears,
J
I'm pleased you did post the details. I bought the paper back book as well. When C was first diagnosed I kept notes of what was happening In our lives and thought that one day I may write a book about it. Reading Kathryn Scotts first chapter, I would never be able to write like that. I think it's one of those can't put it down until it's finished books.
X
Nanna, you wouldn't be able to write a book like that because its not your story! Yours would be a different story. It is good when people in the public eye write about getting diseases as it calls attention to the disease. But what about the story of a regular person dealing with all of this? Every love store is a great one as far as I am concerned. All good writing is either extraordinary characters living ordinary lives or ordinary characters living extraordinary lives. Keep taking notes
I'm afraid my notes have become less and less over the years? Some time ago I did think of trying to print off all the posts I have put on here. Not to put them in a book but to remind myself of what happened and how I felt at the beginning. I can easily do my posts but all my replies would be a bit more difficult. Maybe when I don't gave anything else to do 😄
X
I hope by then, NannaB, you will have plenty else to do. Living through PSP once, I think is bad enough. To do it twice, well...........
Lots of love
Heady
True. I don't have time now as any spare moment soon gets filled with other things that I like doing. When I have loads of time I think I'll do something I never did in my youth.......go wild and enjoy life.
X
Kathryn was the speaker at the conference in New York a few weeks ago, and also a member of a panel discussion. She is a lovely woman and spent a lot of time amongst us, talking to everyone. We bought her book, but I haven't read it yet.
a good thing 2 do
ii canot read any more [might try and get my partner 2 read it {some hope there i don't think]]
Had my copy d liveried yesterday and will be very interested to see what it has to say and how it may help me to fully understand this condition. Thanks for the info.
Did you know that 20,000 Americans divided by how many states (50) equals 500?
That's 500 PSP patients per state, give or take their population! I read where there were only 7,000. This other number sounds more reasonable. But still that's the size of a medium sized town! A town of that size, grows up in the same schools , get married to so and so's down the streets nephew ...compared to breast cancer where a size of a metropolis would define its population....26,000 will be diagnosed in 2016 alone. Even more men will get breast cancer than they will get PSP! It is good to have friends or those who can speak that do speak! We soft=worded sort need to speak out too. I took B to the gym the other day and met another intern. Cute girl studying kinesiology with emphasis on research. So I asked her if she has a thesis yet...."How bout this one " And Bruce and I introduced her to PSP! Who knows, she may be the one to find out how to recircuit the muscles or something.
AVB
My first post 
Scared Newbie
REFUSE TO RELEASE MY HUSBAND
