Hi all I went and seen my consultant today she is pleased with me and my progress and says that she can see that the levodopa has made an improvement.
But she mentioned to me about transferring my care to a Movement Specialist that deals with Parkinson's due to my age and that I could possibly get better treatment from them due to my age (37) and possible drug trials.
Has anyone else been been transferred care from the Neurologist to a Movement Specialist?
Trev
Hi Trev,
Yes I was transferred to a Movement Specialist.I was diagnosed by a Neurologist and saw her once after diagnosis and then to a Movement Specialist.
I have no complaints about this,my treatment has been excellent,I can speak to him whenever I need to,i have been diagnosed for over 5 years,l live in Scotland but am considerably older than you I am 76!!
Hope this works out for you
Cheers Anne
Thanks Anne,
So is it pretty much the same thing or is the Movement Specialist or is the Movement Specialist more based on Parkinsons as a Neurologist does all things based on the brain?
Will the Neuro keep me on her books? She has kept me in contact with the Parkinsons Nurse and she has done genetic testing.
Trev
Hi
I just see a Neuro(as well as pd nurse) in my area as that's all that is available to be seen by, but my local working age Pd group does an activity each monday called PD warrior, run by a physio( i could be wrong in that term) who has an understanding of movement problems for people living with parkinsons, the group exercises as a group, but the activity is tailored to the individual, I may be wrong but i think i heard something about it being rolled out nationwide, something like that may be of value to you trev?.
Hi Trev
Nice to hear from you again on the forum,
Hope everything works out ok for you.
I see my neurologist every 4 months and in between see my parkinsons nurse.
Wishing you all the best Trev
Barbara x
Hi Trev,
The movement specialist I am under has a special interest in Parkinsons ,I am now not under a neurologist .It may be different in England.I am under care for the elderly because of my age.
Think what Sea Angler says about the PD Warrior would be good, I wish there was one here.
All the best Trev Cheers Anne
Hi thanks for all the replies... Yeah SA that sounds interesting I'll look into it.
My letter from my Neuro came this morning and it says "I think his on going follow up would be better within the movement disorder clinic given his age" and "he was happy for routine review across in the Cresta specialist clinic but i think we would find it easier to have the PD nurse locally within Chester-le-Street in the interim."
So from what I've read it seems to be basically the same treatment normal review or will they do movement tests on me again?
After doing some research on the clinic I found this http://www.newcastle-hospitals.org.uk/about-us/research-and-newcastle-hospitals_research-facilities.aspx and https://www.google.co.uk/url?sa=t&source=web&rct=j&url=http://www.newcastle-hospitals.org.uk/downloads/Neurology/Parkinson_Clinic_Overview_v4.pdf&ved=0ahUKEwiavffMvprVAhURmrQKHUyHCj0QFgggMAE&usg=AFQjCNFYwHyMXYKV7lLzX-m3JOaUJYIlww
Seems to be a research clinic led by Professor Burns it says this in the pdf that I linked... New Diagnosis Patients
This Service is to provide a rapid
access clinic to all new patients
who are thought to have
Parkinson’s disease. They should
be referred untreated and we
will triage to the most
appropriate clinic. We will aim to
see these patients within 6
weeks.
Already Diagnosed Patients
The Service will see patients
referred with an existing
diagnosis of Parkinson’s
Disease. These patients will be
given an appointment based on
clinical priority.
So as I am already diagnosed maybe I won't have to go through all the through all the newbie rigmoral and maybe I'll have access to new drugs... Do you guys think I'd be better off there or in care of the Neuro I have been seeing for almost a 2 year? As I am tempted to switch back.
Trev
