KD5RFM, taking it All, one Day at a time,I'm a survivor
 

Hello, I'm Kd5rfm

Have Parkinsons And Osteoarthritis*, *which Was Just Told
This Year.

I'm Very Lucky, To Have A Good Wife, We Only Had Been Married
Two Years When I Was Dx'ed With Parkinsons, So My Wife Is A
Stand By My Man, Which I'm Grateful For.

Again, Hello, Everyone, Lets Stand Beside And Help One anoter
The Best We Can, In Understand Each Other If Were Down,so
We Need To Be Good Listners, For Venting One's Frustions Can
Be A Help, But We Must Not Give Advice, Except, Say See Yoir
Neurologist, Because They Know Whats Best For You and if You
Have a, spouse, caregiver, etc., let them talk to the Neurologist
also,Why? they may see something you don't see in yourself,
which colud give them an insight on "YOU", in helping in their
decisions, in treating You correctly.

Welcome! I must say, though, that your comment:

has not proved true for me at all. I take baclofen and find relief from painful foot dystonia, only because I begged a neuro for two months to allow me to take it. I'd been spending $200 a week on taxis to get to work because I could hardly walk. I have many other examples of neuros who don't know what they should know.

Neuro's don't always know what's best, and we often give great advice around these parts. Sorry if that might disturb you, but I'll continue to seek advice and give advice on this forum, when it seems needed.

First, considering some of the threads that have become so interesting in the past, I will preface my comments with, in no way am insinuating that you are wrong or being misleading, but only making my comments because it is how I feel. So, please DON'T take offense. I think this is a good topic for discussion though.

Most of us do begin with comments like "I am not a doctor, but..." or some other "disclaimer."

We all live in the same "realm" of PD. We all live and talk the walk, as it is said. So, we do have learned experience that we can share with each other. That is why we are on this board to share and listen and assist and stroke when necessary when someone is down and struggling emotionally.
And I have to disagree with some of what you said. First, not all neurologist "know what is best for us." We have seen and read the frustration of Forum members who can't get a common sense reply from the neuro. Also, there is a distinct difference between a general practice neuro and one that specializes in movement disorder such as PD. As individuals we are consumers when we walk into ANY medical practice and as consumers we should know as much about what we are there for as we can. In some cases some of us may know more than our neurologist know.

Also, many of us do not have the luxury of spouses, caregivers and/or family members who will stand by our sides and read a list of concerns, or provide compassionate care for us.

So, I have to ask:

1. Which to you see, a GP neuro or a MDS?
2. Why do you feel that providing learned advise to Forum members is wrong?

Welcome, KD5RFM
 

It's always nice to "hear" from a visitor...thank you for your post. First, let me say that as a visitor, you are probably unfamiliar with the forum and its members...their very valuable input based on their own experiences and the sharing of these experiences...and, too, based on their wealth of knowledge acquired through search and research. This having been said, it's important for you to understand that, as Carolyn said, "not all neurologists know what is best for us." I want to tell you that it has been through the shared experiences of the people on this forum that I have been able to "work" with my pwp's (person with Parkinson's) neurologist to find medications that "work" best for her. You have to keep in mind that these people have experienced this disease in all its ugly aspects and, as with anything, we cannot really "know" until/unless we have actually experienced...that is just the way it is...and, in many (if not most cases) the neurologist have NOT experienced this disease and, in many instances, it is they who learn from their patients. We are fortunate in that my pwp's neurologist is quite aware of this, and is always open to our suggestions based on our personal experience. He is never so arrogant as to think that he "knows it all and knows best". This, to me, is a doctor who really cares...who really wants to do what is best for his patient in any way that he can...and is willing to accomplish this even if it means that he has to "come off that pedestal" where so many place their doctors. I believe that you are not alone in thinking doctors know best...that it is assumed by many that certainly the doctor knows best simply by virtue of having the title "doctor"...and so...what Carolyn and I are trying to help you to understand is that it is important for YOU to know that how and what YOU feel as the pwp is equally important as what your doctor feels is important...that you shouldn't be intimidated by a doctor simply BECAUSE he is a doctor...that there will be times when it will be YOU who knows best. I hope you will continue to visit us, here...and perhaps, even join us. It is a place where you will learn...where you will be supported in every way...medically and emotionally. Thank you for being here and sharing with us.

Therese

Thank you Therese, you have embraced this issue in a much warmer, comfortable fashion than I did.

Carolyn