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Friday, February 3, 2012

No, No, Don't stop the Blog! (Amy Winehouse)

There are times when I think that I should stop writing the blog. I only write when I have something to say, so there are big gaps in time. 
I suggest that if you are interested in any future blogs, you fill in your email address in the box on the right of the blog, and any posts I make will be delivered right into your inbox.

Thanks for the letters of concern after my big whinge. I went to my neuro, and he adjusted the device and put me back on a low dose of Sifrol. (Pramipexole hydrochloride).
i know that it will take time to reach the right setting, and have faith that I will get there.

Meanwhile, I would like to share some emails, many from people I have never met before, which tell me that people are finding my blog, and that I am helping them in their DBS Journey. If not for this feedback, I would have stopped long ago, so please let me know if you are following me from another country.

Thank You for the blog.  I happened upon it by chance this morning as I was looking for more info on DBS.  My wife, Louise who is now 61, has had PD for about 9 years.   We are considering DBS at some point.  Much of your experience is similar while some is not, but that's PD.  I was especially interested in your sleep, or lack of it,  stories as well as the entire DBS surgery and aftercare.  I hope all is going well/better after your most recent neuro visit and would encourage you to continue the blog.  I will have her read it when she returns home this afternoon.

Marshall, Oregon USA

And from Louise;

    I hope you are having a good dayl My husband wrote you yesterday after reading your complete blog.  I read it also.  Your blog is the best!!!! Our PD journeys sound very  much alike. I hope to see a new entry from you soon!  Louise

Hi Karyn, 
My name is Michelle  and I found your blog through a parkinson website in the United States. 
Im currently reading your blog and find it incredibly helpful and wonderful. 
My Husband is 42 and was diagnosed with PD when he was 35 - started having symptoms about 1.5 years earlier in 2004, but we thought it was his back causing the issues. 
We have two little girls ages 7 & 2 and he is considering DBS next summer.  
I am glad to see you have continued your blog and wanted you to know that it is still helping people who are facing this surgery. 
Thank you
Michelle, USA

Thank you Karyn
Please keep sending them as they help me learn about PD and DBS as well
I hope you keep going well 
and all the Best
Kevin, Sydney, Australia

I just read your blog and I am so glad.  I had my DBS about 6 weeks ago, and have been very discouraged.  I still shake, my toes still curl under, and in some ways, I am worse than before.  But after reading your blog, I realize that it may take some time.  I just wish I could see ‘something’ better, you know?

Thanks for writing the blog, and please don’t stop.  Or you can write me direct too.

Barb Lambert

Hi Karen I am interested in your news, I have been reading your journey, please keep talking !! I'm listening.
Take care, Liz x

Like the update, I check it regularly, keep adding.

Yuma Bev, USA
   Dear Karyn
I remember first meeting you 'online' when Paul and I sponsored this lady from Melbourne for her Vietnam Bike Ride! 
Ever since that day Karyn we have followed your journey living with Parkinson's Disease, supporting you by attending as many of your Y@P meetings as we possibly can, considering we have a long journey from Geelong!!  Even our 2 teenage girls have enjoyed attending your gatherings and have grown to admire you and everything you have been through.
Not only have we met at many different functions along the way including the Support Group Meetings and the Unity Walk but we have become friends as well.
We have read every word of your Blog with great interest and infact learnt more about the DBS procedure from your very informative articles and that makes our following of your previous couple of months so much easier to understand.
Not only did you achieve your goal with the help of your loving husband and 2 sons but you allowed all of us in the greater Parkinson's community to also follow your story.
Loved listening to you on the radio, watching you on George Negus and generally just knowing that you 'did it'.  You managed to achieve what you set out to do and that was to not only attend the Unity Walk but to actually participate only 3 short weeks after such a major life changing experience.
Thanks again for a great blog, with many good wishes for a healthy future.
In friendship
Louise, Paul, Carmen and Danita, Geelong, Victoria

From a very courageous and incredible woman;
I read your entire Blog going right back, and it all looks quite scary stuff. I admire your great courage at going through with this. It must have been a very difficult/worrying 
time for yourself and family. You are amazing!

Elaine, Israel

I would keep it going for as long as you are willing. with your tv appearances, etc., who knows what this could turn into. i've read every entry.
David, Jacksonville USA

And finally, from my loyal commentee, Dan of Vegas USA;




  2. You are such an inspiration and a friend that I've come to depend on for so much support. You've done so much to bring PD to the forefront. Keep up the blog, so many people benefit from this as much as, if not more so than the fund raising efforts you have sponsored.

  3. Please don't stop your blog, you can't even begin to realize how many people you have helped. I played your surgery video at our local support group and I'd like to tell you about one man in particular, his name is Dick and he is a friend of mine. He watched the "manufacturers" DBS video and still had questions. So, he asked me and I sent him the link to your blog. His DBS surgery is scheduled for Feb 23, and your blog made the difference in his decision, and he has seen the recent ones, too. So, Dan is right, keep on woman, blog on!

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