Hi all....I don't know if anybody knows about a book I saw on facebook today called
ORTHOSTATIC TREMOR
Am I The Only One
by Jane Baker Conner
I bought it on line from amazon.com $8.09 Shipping & Handling $10.48 (Australia).
I hope this has been of some use to somebody.
Cheers Graham (GraGra)
OT Book
Moderator: gloria
Re: OT Book
Hi Graham,
Thanks for starting this discussion, the book arrived and here's a quick review of:
Am I the Only One? by Jane Baker Conner:
---
The diagnosis of Orthostatic Tremor is one of mixed emotions, you receive a name for the disease, but it is as intangible as the most common symptom - how can someone walk but not stand?
And this is the real benefit of the book, it exists, it is tangible. I even like that it is not an "eBook", it is real paper.
This is a story about Jane and her experience with OT, eventually leading up to her choice to have DBS surgery. Many of the challenges and feelings of isolation with her diagnosis of OT will sound familiar to the stories found within this website and forum.
The bigger difference is that Jane chose to pursue DBS, something that few with OT have done. Many doctors that work with OT shy away from DBS because of unknown target sites for this disease, and the larger question of whether the risk/reward of the procedure can be justified. It is certainly a decision that requires much thought and investigation for someone with Orthostatic Tremor.
The author does describe the complications she encountered with insurance companies and with the procedure. But, in the end she also mentions some relief as a result of the surgery.
There is a discussion here on the forum that includes some feedback from other members about DBS. It would be helpful to continue this discussion and we encourage people to continue to contribute their experiences.
Link to DBS discussion
….these are just my thoughts and hopefully there will be other reviews. Thanks to Jane Baker Conner for writing the book and you are welcome to join in the discussion.
Thanks for starting this discussion, the book arrived and here's a quick review of:
Am I the Only One? by Jane Baker Conner:
---
The diagnosis of Orthostatic Tremor is one of mixed emotions, you receive a name for the disease, but it is as intangible as the most common symptom - how can someone walk but not stand?
And this is the real benefit of the book, it exists, it is tangible. I even like that it is not an "eBook", it is real paper.
This is a story about Jane and her experience with OT, eventually leading up to her choice to have DBS surgery. Many of the challenges and feelings of isolation with her diagnosis of OT will sound familiar to the stories found within this website and forum.
The bigger difference is that Jane chose to pursue DBS, something that few with OT have done. Many doctors that work with OT shy away from DBS because of unknown target sites for this disease, and the larger question of whether the risk/reward of the procedure can be justified. It is certainly a decision that requires much thought and investigation for someone with Orthostatic Tremor.
The author does describe the complications she encountered with insurance companies and with the procedure. But, in the end she also mentions some relief as a result of the surgery.
There is a discussion here on the forum that includes some feedback from other members about DBS. It would be helpful to continue this discussion and we encourage people to continue to contribute their experiences.
Link to DBS discussion
….these are just my thoughts and hopefully there will be other reviews. Thanks to Jane Baker Conner for writing the book and you are welcome to join in the discussion.
Re: OT Book
Thanks for the info Graham, just found the book at Amazon i will order one....the word is getting out We are in print now
Enjoy your summer I have been to Dapto many times small world..wot
Enjoy your summer I have been to Dapto many times small world..wot
Re: OT Book
not sure if this is the thread to give my thoughts on JANE BAKER CONNER `S book am I the only one ..
Jeff feel free to shift this around if you think fit .
I was `so` looking forward to receiving and reading the much awaited book...`it` arrived I read it in one sitting and after ,felt very flat and disappointed...I re read it quietly over the next few days ....the DBS was interesting and something to ponder , I did learn a way to sit down and get out of a chair to avoid the usual OT flop , and had my idea of leaning my weight thru my back or shoulder to a wall where possible when descending down stairs if my tremor kicks in ,endorsed ......one thing this OT book has proved , we all thirsty for some good information on OT in a readable book form , for ourselves and to pass out to enlighten family and those close,who care ....not sure this quite cuts it , but thank you Jane , some one needed to lead the way ......Didi NZ
Jeff feel free to shift this around if you think fit .
I was `so` looking forward to receiving and reading the much awaited book...`it` arrived I read it in one sitting and after ,felt very flat and disappointed...I re read it quietly over the next few days ....the DBS was interesting and something to ponder , I did learn a way to sit down and get out of a chair to avoid the usual OT flop , and had my idea of leaning my weight thru my back or shoulder to a wall where possible when descending down stairs if my tremor kicks in ,endorsed ......one thing this OT book has proved , we all thirsty for some good information on OT in a readable book form , for ourselves and to pass out to enlighten family and those close,who care ....not sure this quite cuts it , but thank you Jane , some one needed to lead the way ......Didi NZ
Re: OT Book
Di Di I also read the book in one sitting,( I Sent a PM to Graham to thank him for letting us know about it)
However I am glad I took my Neurologist.s advice about D.B.S. and did not have the operation .
I found the book very very depressing,
After 20 years.... I have in the last in year or so become very excepting of my situitation and now accept help from my family and friends
However life goes on I Zip on the smile when I step out of bed and get on with the days challenges..
Im sure life will be better for the younger people facing this unrelenting daily challenge
As my grandson said to me........You are very good at crawling Nan...
Happy Days Maureen
However I am glad I took my Neurologist.s advice about D.B.S. and did not have the operation .
I found the book very very depressing,
After 20 years.... I have in the last in year or so become very excepting of my situitation and now accept help from my family and friends
However life goes on I Zip on the smile when I step out of bed and get on with the days challenges..
Im sure life will be better for the younger people facing this unrelenting daily challenge
As my grandson said to me........You are very good at crawling Nan...
Happy Days Maureen
Re: OT Book
Hi ...there has been no more discussions about Jane Baker Conner`s book ?....I note Jane has since joined the private [or is it closed ]OT face book page started by a group of Australians that I enjoy being part of .
I personally feel very nervous about fronting up to Jane after my reasonable negative comments I personally made about the book , but realize if Jane had the courage to front up to OT and take on D.B.S then write the book she will be more than capable surviving our comments...
I hope to now connect with Jane though the FB site and encourage her to join this forum too , [ who knows she may well all ready be a member??#?] anyway it goes without saying ,I know she will be greeted with the warmth and toleration we all experience here ...............thank you Didi NZ
I personally feel very nervous about fronting up to Jane after my reasonable negative comments I personally made about the book , but realize if Jane had the courage to front up to OT and take on D.B.S then write the book she will be more than capable surviving our comments...
I hope to now connect with Jane though the FB site and encourage her to join this forum too , [ who knows she may well all ready be a member??#?] anyway it goes without saying ,I know she will be greeted with the warmth and toleration we all experience here ...............thank you Didi NZ