What all do Parkinsons nurses do? Do we have them or the equivalent in the U.S.?

[Joyable]

[christinemc]

Our hospital have a team of 4 Parkinson Nurse Specialists, who work alongside my Neurologist and his team. They were great when I got my rather brusque diagnosis of "well its not a tumour on your brain - you just have Parkinsons" from a previous consultant. They explained to myself and my family the many varying symptoms, and also that every person has it differently. They are available to ring for advice five days a week, and are more knowledgeable about Parkinson drugs than my family doctor ( who also rings them if we have any issues).They give me help in so many ways, I am so lucky to have them, I do hope you have something similar . Be strong xx

[carolineb211]

I to only have good experiences of my Parkinson's nurse.

When I was first diagnosed. She was the person I went to with all my questions.(and believe me I had lots of questions) she never got fed up with having to respond to me, took all my concerns seriously and always got back to me if she didn't know the answer herself.

She also spoke to my consultant on my behalf. When I was struggling with side-effects from medication.

Parkinson's nurse specialists are an essential part of the service in my opinion. With the best will in the world, consultants don't have the time to provide that type of service.

I hope you do find you have a similar service in the US as it has been a lifeline for me, and many others.

A big thank you to Karen, My Parkinson's nurse

[Joyable in reply to carolineb211]

Now I need to ask what the role of a consultant is?

[PatV]

Mine (heintje) is a great (handsome ) guy who writes letters to Medicare and Aetna explaining why I need klonopin and lidocaine patches, refills my scrips and always has a big smile and a hug for me. (my doctor does too but he's mega busy). He does other stuff too .

[Joyable]

Thanks. My neurologist is about 60 miles from my home & hard to get in touch with. He does have a nurse & social worker who are easier to reach. Maybe they are meant to be playing a similar role & I just haven't felt comfortable reaching out to them.

I, too, got a brusque diagnosis. Mine was from a pain management doctor. After nearly 6 hrs in his ofc, he said, "You've been misdiagnosed. You have Parkinsons Disease." I said, "Are you sure?" He said, "Of course, I'm a board certified physician." & walked out of the room. I went home & began researching PD. The quotes are exact. I've gone over & over the conversation in my head & it isn't a lot to remember.

[Joyable]

Anybody else want to share stories about how you were diagnosed?

[wifeofparky]

There has to be a better way to tell someone their diagnosis. When we went for a consult with the neurologist, he did a neuro work up, had Ken walk up and down the hall and asked a few questions. Then without missing a beat, said, "you have Parkinson's. Take these pills, stay active and you will be fine. See you in 3 months." That was it. No literature, no advice, NA DA. I went home and started to research and cried. He does fine for awhile, then has an unrelated health issue and backslides. I pray each day that the rest of his body stays healthy.

[GrammyC]

My family doctor was the first to diagnose. He was so kind. He told me that, and I quote, "It will be a very happy day in my life if I am wrong, but I think you have Parkinson's. I am sending you to a neurologist." His words are permanently seared into my mind!

[Joyable in reply to GrammyC]

You too. I wonder if most of us remember the exact words used when diagnosed?

[maryalice]

Joyable, (I love your user name)

I don't think I'll ever forget how I was treated. First I went to a GP and he looked at my tremor and said I'm sending you to a Neurologist, but I'm sure it's Parkinson's. Then he told me that he would order an MRI and it would be sent to the Neurologist that he was referring me to, and his nurse would call me when she made the appointment to confirm it. Then he walked out. I really didn't know what Parkinson''s meant, so I went shopping since I had already taken the day off work.

When I went to the Neurologist I thought I would get some answers. He did about a five minute exam and said come into my office. He told me that he looked at my MRI and proceeded to tell me that I had Parkinson's Disease. The phone rang and he answered it, and then he told me I could go but to come back in a year.

Needless to say I found a new Neurologist and Family Doctor. I love my Family Doctornow. She is so great! I'm not too happy with my Neurologist, because it seems like all he does is hand me a new prescriptions. This site told me about

Movement Disorder Specialist, so I'm going to be seeing one soon.

I'm sorry that this was so long, but it felt good to tell my story. Did you ever find out if the USA has PD nurses?

maryalice

[Joyable in reply to maryalice]

Thanks for sharing. Wonder how it can be acceptable for a dr. to give a diagnosis but not explain what it is? Don't think you should be sorry for length of post. Most of mine are long.