A good visit to the neuro

[Joanne_Joyce]

I'm considering changing to a new neuro. I'd like suggestions on what are the characteristics of a good exam. I want to go beyond a 10 minute session and have something comprehensive that includes non-motor symptoms. What is the experience of others? I've seen some mention on this forum of blood tests and others have mentioned a PD scale.

[Peaches]

I am planning on doing the same thing so I will watch for replies and suggestions that you get. Thanks.....

[Joanne_Joyce in reply to Peaches]

Hi Peaches,. Hope this forum helps you too.

[Allyn]

I'm a retired Nurse. Once, I had a client distressed because her child's doctor was leaving town. She said to the doctor - "but I need the best for my child" The doctor replied, "no, you need a doctor who cares"....

I think we are in the same boat. It's not what a doctor does (in the way of ordering tests, prescribing "x" number of medications, or how many years they have been in practice. It's whether or not they listen to you, make you feel comfortable and are willing to be your partner. I also believe that a wonderful doctor can do all of these things in a very short amount of time.

[Joanne_Joyce in reply to Allyn]

Thanks Allyn. Yes, that personal relationship is so important.

[Hidden]

Ditto Allyn "It's whether or not they listen to you, make you feel comfortable and are willing to be your partner."

Blood test: should include vit D levels

Neuro vs. GP: After the dx by the Neuro, one visit, I returned to my Primary Care Physician a told him that I wanted him to manage my Parkinson's. He was agreeable and said we will learn together.

[Hidden in reply to Hidden]

Blood test: should include vit D levels; post dx exam as people have short fall. Not suggesting vit D is a dx tool.

[Joanne_Joyce in reply to Hidden]

Thanks Roy. Please can you tell us more about the Vitamin D tests?

[Hidden in reply to Joanne_Joyce]

your blood test should show levels of 100ng or mg I do not remember exactly nor do I recall the link. I find Penn State saying "Vitamin D (400 to 1,000 IU) -- People with Parkinson's disease often have low levels of vitamin D".

[Peaches in reply to Hidden]

Very interesting. My Neuro recently ordered that test for me with some other blood work. The insurance company denied it so I had the others and did not get that one.

[Pete-1]

No blood tests available for PD or PD like ailments. Diagnosis all done with observing "signs and symptoms", e,g, checking up ward gaze. If unable to turn your eyes upwards that indicates possible PSP. Progressive Supranuclear Palsy. This what Dudley Moore had, lots of problems with balance and getting about.

There is the DATSCAN which can confirm PD.

Loads of signs and symptoms - too many for me to write about. My own list gets up to 40 of these. Try the wikipedia entry on PD. Link follows:-

en.wikipedia.org/wiki/Parki...

[Joanne_Joyce in reply to Pete-1]

Thanks Pete. I was diagnosed in 2011. I agree there are a lot of signs and symptoms and I'd like a neuro who is interested in the non-motor symptoms and well. I haven't counted up to 40 yet though. Hope you are getting relief from them.

[Hidden]

I agree with others that you have to have a doc that will not make you feel like they are in a hurry to be somewhere else. It helps also to make sure the doc and office staff are accessible when you need them. A major university may have staff available if your doc is not there. You should be able to reach someone in

an emergency. Something else that I really like about my doc is that I can email him anytime with a request or question and he answers right away. I can request change of meds etc and he answers within a day. I would also like to have someone who is open to alternative treatments instead of just going "by the book" but that may be harder to find. hope this helps.

[Joanne_Joyce in reply to Hidden]

Thanks Siak. It's good you have found the right doc I'm considering switching to Emory University hospital in Atlanta. I told my present neuro about my Coconut Oil but he didn't say anything. Let's see what happens if I try a new doc.

[Hidden in reply to Joanne_Joyce]

Hi Joanne, Another thing you might try are the "Centers of Excellence" that the Nat. Parkin. Foundation has all over the country. They sound like wonderful treatment places. You can look them up on the website. I don't have any by me unfortunately. I just looked at the list and Emory University in Atlanta is one. LUcky that you are near there! I hope they can help you and that you find a good doc there.

[Joanne_Joyce in reply to Hidden]

I'm really excited to learn that. thanks for that info.

[HeatherBB]

I want a dr who doesn't tell me to go home and read everything on the internet and if I see something I want to try to give them a call.

[JohnPepper]

Hi Joanne. You should ask your neurologist to do an exam using the UPDRS (Unified Parkinson's Disease Rating Scale). He should then record all the results of that test and every six months he should do another test and record the results to see whether you are getting better, staying the same or getting worse.

If you were to start doing my fast walking program, which costs nothing, you will possibly find that your UPDRS results will improve, as has happened to one of my friends. She has been going back to her neuro every six months for the past three years and on each occasion her results have improved. He is 'Mystified' by this! He knows all about me and my book but he has never thought of talking to me about it. Isn't that peculiar?

Try it, it works!

Kind regards and Happy New Year

John

[Joanne_Joyce in reply to JohnPepper]

Thanks John. Yes, that is the rating scale I'm interested in. I feel the exam should go beyond watching me walk Iwithout asking me when I last took my meds - since my gait varies according to my meds schedule) . I'm working on my walking programme and have moved from 3 laps to 4 laps around my walking path. How wonderful it will be to have

improvement instead of degeneration.

[JohnPepper in reply to Joanne_Joyce]

Hi Joanne. Have you tried to find a neurologist who does these UPDRS tests?

John

[Joanne_Joyce in reply to JohnPepper]

I'll look for one. I think it is important.

[JohnPepper in reply to Joanne_Joyce]

Hi Joanne. Good luck!

John

[Joanne_Joyce]

Thanks Odisge. It sounds like a great place for anyone in UK.

[Joanne_Joyce]

Happy New Year everyone. My prayer is that we each experience improved quality of life in 2015.

[Beckey in reply to Joanne_Joyce]

Right back at ya, Joanne!

[honeycombe3]

Happy New Year.

I am relieved that my consultant has been allowed to continue his outreach PD clinics since retiring a few months ago. As many of you will know he is a geriatrician with a special interest in PD. Thus I get time for a holistic discussion twice a year for which I prepare by emailing the main points for consideration. I have been supported through 2 yrs of alternative treatments (8-10 years ago) & I still use some therapies for physical well-being.

Re tests for diagnosing PD: if you want to get state of the art testing having been dxd by more elementary methods then why not look for trials where testing is a component? I spent over 2 hrs in one of the most advanced MRI scanners at Hammersmith hospital doing a battery of tasks which a) confirmed that I have PD b) I have a brain & c) documented where the the PD is having most impact. I had to withdraw from the trial for other health reasons but was given copies of the scans.

[vivace1017]

I live within and hour and a half drive of two major medical centers in North Carolina: Duke University and Wake Forest School of Medicine in Winston-Salem. Both have excellent Movement Disorder Clinics with teams of doctor and nurses who specialize in Parkinson's related issues. My way of "fighting back" in dealing with PD is to volunteer for times trials. Fortunately, I've received excellent, cutting edge treatment. In both clinics, I found neurologists who listen well, ask pertinent questions, perform numerous neurological tests as part of their exam, and explain quite well what is happening. Both were/are available by email, and I usually get answers, often phone calls, within 24 hours. Currently, I am in the DBS Intrepid study sponsored by Boston-Scientific. While it is exhausting at times, I have tapped into some of the best technology in the world. as well as a team of doctors who are on the cutting edge of PD research. Wake Forest has a fabulous team, always attentive to my observations and experiences and needs. I always get in to begin my exam within 15 minutes, and am always treated with respect and dignity. Oh, an did I mention that my Parkinson's symptoms are managed amazingly well. Not bad for 6 and half years after diagnosis and age 62.