Shannon, a young woman from Arkansas, found me on my blog. She wrote me about her mother with Parkinson's Disease who had poor DBS results.
Shannon gave me permission to post her email as follows:
August 7, 2009
I had to write today to tell you that because of your advice and encouraging words, my mother now has an appointment scheduled with Dr. Okun at the University of Florida. We are beyond excited about the possibilities. We are hopeful for good news and positive changes. But we know that sometimes there is nothing more that can be done. Whatever we find, at least we will know that we did everything possible to help my mother.
It has taken 3 months to go through her current neurologist for a recommendation, complete forms and write letters to the insurance company, and speak with the patient intake coordinator at the University of Florida. But as of yesterday, she is scheduled for October 19th and 20th. We will make our trip from Arkansas to Florida then. Regardless of the results, we will be making memories with her and we will know (and she will know) that we are doing everything we can to make her life a better one.
Thank you so much for taking time back in May to respond to my email. If it hadn’t been for your direction, I don’t believe that we would be planning a trip for October. Again, thank you so much, and I will continue to keep you in my prayers as you live your life with PD as well. I pray all the best for you! And I pray that God bless you for blessing me and my family.
Shannon from Arkansas
May 11, 2009
Your mother is blessed to have you as a daughter. You seem very caring. It must be difficult to see your mother going downhill so quickly.
I am writing this as a person who has had DBS. I have no medical background.
Generally, the DBS problems relate to the electrodes not being placed in the best location and/or improper programming. There is a shortage of competent programmers.
It seems like your mother could benefit from a second opinion. If I was in your situation, I would become a member of the free Yahoo DBS surgery group by sending them an email of introduction (something similar to what you sent me).
To subscribe: DBSsurgeryfirstname.lastname@example.org
This group has 1000+ members, many of them who are extremely knowledgeable and caring. They may be able to suggest where you might go for a second opinion/consultation.
My friend, Valerie, struggled for four years with programming problems, but once she found the right programmer, her life dramatically changed for the better.
Please let me know how you decide to proceed and the outcome. Don't give up on your mother yet.
All the best to you and your family,
Kate from Colorado