Please help!
 

If anyone could help me, I would REALLY appreciate it.

Mom was diagnosed two weeks ago tomorrow and the neurologist referred her to a PD specialist. She finally got called back with an appointment date for that specialist: March 24th. That’s over three months from now!

She would like to go back to the original neurologist and get started on some PD medications (I don’t know what kind, agonists, whatever!) because the tremor in her left hand is pretty severe and affects her ability to work. She is also having major trouble sleeping at night. Three months seems like an eternity to even begin any sort of treatment. If her tremor was slight like it used to be it would be more manageable and not an issue.

The neurologist is now acting as if he does not want to see her again. He has called in a prescription for Xanax to help calm her but has not set her up with an appointment to come back in to talk to him and when she mentioned this specifically to his secretary she said that the “Xanax is what Dr.B recommends.”

I would love for her to go see a new neurologist but because of her insurance she needs a referral to do so. How should we go about this? Should we go to her primary care doctor and ask them to refer her to a new neurologist?

We’re lost!

Sure it's difficult...
 

Alicia, but it doesn't mean the end of your life, or your love of life. It can mean the end of some friendships or uncaring spouses, but with a caring daughter like you, your mom has a lot of good life to look forward to. Since she is already diagnosed, there is little chace taht she can get long term care insurance, DAMN!!! If only people could have made it to our doorstep BEFORE a doctor said anything about PD, then she would have had a shot at long term care insurance, which most of us eventually need. PD can be expensive, because to be properly medicated to get the most good out of ones' time with PD takes a lot of experimentation with expensive drugs. Get her on Sinemet right away, she will have a number of years of what we call the "honeymoon" before worse symptoms set in .If all goes well, she will even at times forget that she has PD. The good news is that with a change of administration, we should see a ramping up of stem cell research, and I have never been more hopeful than right now. Many of us have lived with PD during the research "hold" of the Bush years,that was a very disheartening and frustrating time for us as far as a "cure" was concerned. Hopefully President Obama will allow federal funds to be used for stem cell research and thus attract some of the finest researchers to the field. Personally, I am convinced that once they have found the "right" type of stem cell, one that behaves and does what it's supposed to do, millions of people now suffering from PD will be liberated to a great extent from the ravages of PD, and we will for the most part, get up and walk confidently through life again, a "reawakening" of a more permanent nature than that experienced upon the discovery of L-Dopa. I hope that this brings the hope to you that you seek. One more thing, because there is so much more hope with each coming day, do not allow your mom to "wallow" in self-pity like so many of us did, when we believed that a DX of PD meant the end of our lives. Take a positive stance and you wil avoid losing so many of the things that so many of us lost by having a scared, negative attitude towards their DX. Good luck to you both, and may your God lift up your hearts. cs

dear Alice
 

dear alice,
do you live in a small town?
be kind and call your primary care doctor, and tell him you would like
a second opinion -which you are entitled to do
you may want to do abit of research, on movement disorder / neurologist's
in your area... I can feel your heartacche, as both of my parents
have passed away... so be calm & kind and with knowledge tell them
(the doctors) what you need...

Thank you both so much.

I placed a call yesterday to the neurologist's office and left a friendly but quite firm message for him that I thought something else needed to be done for my mother.

Lo and behold she got a call from them today saying that he would like to start her on PD medication (she couldn't recall the name because she was so astonished to get a call back) which they would call in to her pharmacy. He also wants to see her after the new year and before the appointment with the UVA specialist.

I am so relieved that we are getting somewhere. I have quickly discovered that it takes perserverance to get things done in this journey. :)

dear Alicia...
 

well done!
I hope you and your family
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