The experience of patients that MDS in the US are few and far between, and that coverage is patchy extends much further. There are a few MDS in the UK but few have access to them, it is not the general experience.

Those in more affluent areas are better served. WE have NICE guidelines for the diagnosis and treatment of PD that any doctor can access, these do recommend referral to a specialist. The problem is that these are not always adhered to. bigger hospitals do have good specialists in PD.

Debi, I was surprised that in the US you have peer to peer recognition with what sounds like something that neuros opt in to, rather than specifically train in. Though you do qualify that by indicating that where they train is also a factor. Thank you for shining a light on the subject, especially for those of us outside the US looking in.

Sasha, I have had similar to you, only with a specialist, or consultant neuro.
Recognise the experience

Have to agree with Debi, that whether it is IPD or another pd like condition all patients deserve to see someone who can give them the best possible care.

If it is this patchy in developed countries what is it like elsewhere.....

I was referred to an MDS by my neuro (at the time). This Dr. is well regarded and is affiliated with a major medical school here. His mantra was "meds, meds, meds". No exercise regimen, no therapy, nothing but drugs. His opinion was that DBS is a crock and I was too young to be a good candidate for the procedure....I was 45 at the time and was Stage II YOPD, suffering falls, extreme temors, end of dose dyskinesia, etc.

I also suffer from Trigeminal Neuralgia and was referred to the top neurosurgeon in the county for that. When I went to see him for the TN, he immediately recognized my PD and referred me to another neuro.

Thank God, because between the two of them, I was able to get my DBS done June of last year....I am completely med free now and actually ENJOYING life again.

So, for me, the referral to an MDS was not a positive thing.

I see a General Neuro..We have a conference about how Ive been feeling, then an examination, and then another conference to discuss his observations..Average appointment is 30 mins, or longer if needed..He has excellent bedside manner, and doesnt leave me in the dark about anything..Some Drs don't communicate with their patients..Ive been with this neuro almost 7 years, and I have no complaints

I am also one who had a bad experience with a well-known MDS. I will take a good general neuro over a MDS any day.

It is no surprise that specialty training and bedside manor are two different things. Most people in this forum are good self-advocates and I know you will find your way to appropriate care (to be sure, of course there are general neurologists who can provide solid PD care and chemistry between patient and doctor is a key to a great patient/physician relationship). But, please remember, there are many patients who don't even know to look for specialists. And, I have encountered more than one story where a general practitioner's lack of nuanced knowledge led to critical/life-threatening mistakes in care.

Here in this forum where so many people come when they are new to the community and in search of the best information possible, it is important to direct folks, where possible, to the best resources. And, imperfect as the situation is, directing people to Movement Disorder Specialists is essential.

Debi

Even tho my neurologist is not a movement disorder specialist, he is competent in, for example, calibrating DBS devices. So it makes sense to find out what they know and word of mouth is sooo important. I didn't know, however, that movement disorder specialists declare themselves as such. That was interesting.

Nevertheless, my neurologist immediately referred me to a movement disorder center so I'm satisfied for now. Seems to me there should be some type of certification don't you think?

There seems to be a shortage of MDS in my area (East Tennessee). The closest one is about 100 miles away and spends most of her time in the classroom (UT Knoxville). How can we encourage neurologists to go the extra miles in this area of expertise?

Carey - you said: Would the concept of one national source for all PD information (a clearinghouse of sorts) be reasonable?

What a GREAT idea! Is this possible? I mean anything is possible, but how much trouble would this be? Seems with us turning to the electronic medical record, the access to information should be reciprocal.

Peg

I would like to hope that at some point ALL PwP will be told on dx that exercise should be a vital part of their regime to maintain health, it is no good coming to that understanding after years of bradykinesia and rigidity, by that time the body is already damaged, secondary to PD symptoms. And that they will be evaluated and advised on what type of exercise is best for them. I am not saying it is ever too late to exercise, just that some damage cannot be turned around, and our medical carers should be looking after us as whole people not
just malfunctioning brains. This is what MDS should be helping us to do, keep moving, and not just by application of pharmaceutical and surgical means.

Lyndy and all,
I would like to put this challenging question: Has any one in this forum had any benefit from MDS visits?
My answer is a definite NO. I think I would be very much happier working with an informed family doctor who is ready to proscribe PD medicines.
cheers
Imad

Hi Imad,

I must admit that I benefited from visiting MDS and wish I had gone to see a MDS soon after my diagnosis. My neurologist who diagnosed me with PD was wonderful and kind to me, but his practical knowledge and experience with PwP were limiting factors. Looking back at my notes (yep, one of my compulsive behaviours!) I had a lot of side effects from meds and I fail to see the red flags. My neurologist did not pick up on any of my observations or clues to warn me of the side effects of drugs I was on. Fortunately for me, I had to change doctors because of health insurance reasons and ended up with a MDS. The first thing she did was to wean me off of mirapex.
Lindy, She actually prescribed yoga. exercise and good nutrition in addition to meds..Now,.every 6 months or so, I am evaluated.. I get the routine tap your feet etc tests and tests for cognition and memory too.

My MDS works with a group of people including a nurse (NP?/RN ); nutritionist, yoga/exercise teacher and of course a DBS team (neurosurgeon, speech therapist and neuro psychologist). It is recommended that a new patient see the first three and (if one is interested and at the appropriate stage of PD, meet the DBS team too) or attend a boot camp for PwPs, which is a half a day program offered by her team. A couple of people from this team and several PWPs who are treated at this facility are training, with a goal to climb Mt. Kilimanzaro this sept!

I understand this is not a typical setting at every clinic or hospital. I am glad my HMO covers all these things/ I know the value of exercise and nutrition, but never thought of voice and speech therapy. I did stumble into this by accident and benefiting from it. If you have access to a PD clinic with a MDS, make an appointment and visit them, you might be pleasantly surprised.

Girija