When I visit my neuro, as I did yesterday, and have something to say, it usually reflects my concern over quality of ife issues. After all that's where most health issues affect people, not just PD , but all health issues. Sometimes it's the way meds affect me, or don't, as the case may be. Sometimes it is wanting to start a discussion about where I go from here, or how I can help myself. Or simply wanting to know whether this is the best I can expect....

I almost always seem to hit a brick wall. I have often blamed myself for this, for not being articulate, or being woolly in the way I ask about things, or perhaps I'm not helping create the right kind of rapport............. and I have done all the things like make a not of what to say, etc....

But this morning I am rethinking this appointment. Despite being off or most of the way to off, and meds having not lasted that great (that's another issue ) I really tried to get some kind of discussion going. My neuro DOES give me time, I cannot fault him on this. But when I look at the reaction to what I had to say, I was asked to hold my hands out in front of me for a few seconds, told to walk the full two yards of floor space and back, and told that the meds I am on should control my symptoms well, and that there isn't really anything else I could be prescribed ( I have no way of challenging this, no medication options ever get offered).

I was not asked why I had concerns, and more importantly I have NEVER, not once ever, been asked about how my concerns relate to my quality of life........... which has steadily been going down over the seven years that I have been on basically the same treatment.

I wonder how many have had this experience, and whether this is the gap between patients and medical professionals that needs most urgently to be bridged.

I came away, still full of unanswered concerns, with "I'll see you in 12 months' - from the expert in my condition!!!


Lindy

Doctors can see what is the likely run of our disorder. They are specifically trained to watch for specific symptoms to show if the disease is progressing more. He (she) hasn't seen s change in your physical symtoms so sees no need to make changes in your meds. He should, however, suggest a support group, therapy, or some psychiatric intervention to address quality. NPH and
APDF offer centers that has a team approach to treatment. Other members include voice therapy, occupational therapy, physical therapy, and a social worker. Sometimes the team includes music therapists.

If your doctor has not refered you to outside resources, I might ask why or search for a Movement disorder with a "team" oriented approach.

Ii think I am in a similar place in the course of the disease – where there seem to be no more good alternatives –now the task seems to be finding “not so bad” treatment options.
There needs to be better ways of closing the gaps between how we are evaluated clinically and how we are managing in our real worls. There have to be better methods than finger tapping for 5 seconds or walking a few steps. Pehaps the PTs and Ots of the world could help in bridging the gaps between clinic and home – where they are available. Would neuros listen to them?
It sounds like your neuro has not suggested trying any changes in your meds or dosages – would he be open to hearing your suggestons? I We have tried frequent tweaking of my meds and sometines it helps a little, for varying periods of time. The main goal being to reduce levodopa as much as possible. I am of the generation of PWP (dx 15 ytears ago) who were liberally dosed with sinemet during the early years. Now thinkimg about DBS, but there are a lot of unanswered questions
We read studies that compare DBS surgery to the “best medical treatment “ What does this mean and how do we get it??

I strongly feel that if PD-diagnosed patients were routinely referred and monitored by the attending neurologist to specific movement therapies (including informed and strongly structured massage, stretching assistance, physical therapy, physical training - including treadmill, water therapy, weight training, Tai Chi), plus informed nutritional testing and consultation, plus competent endocrinology, preferrably some acupuncture, and not to mention speech therapy and emotional support services - and if these were taken as seriously as the medication (which means the neurologist would need to be educated enough so that she/he could have knowledge of, an opinion of, and basically supervise these integrated efforts), there would be a gigantic shift in "quality of life." Yes, it would cost more - but I think it would also save a tremendous amount rather than dithering around with piling on more and more medications whose side effects accumulate in insidious ways, and then wreak expensive havoc on the body.

I am coming to feel that anything less than this is irresponsible medical practice...but how many people have this kind of treatment I wonder? I think that old-school neurology, solely focused (maybe) on monkeying around with prescriptions, is a joke at this point. And not that funny.

I find this annoying and unprofessional as well, but recognize it is how ALL docs are, not just neuros, although it may be worse with them...since they don't know what causes PD, nor do many seem to care to learn as much as they can about the disease. The specialties most docs now practice do not seem to allow for any knowledge of how one body system might work and interact with another...which leads to a whole 'nother set of problems, IMHO.

At a minimum, all neuros should now be recommending their PWP to exercise, again IMHO. Many do, but not all. Did your doc recommend this? If not, why not? Is he that ignorant of what has been going on in the field? The biking studies have been out for quite awhile, they are even mainstream news in all parts of the country, even if one didn't agree with them, they could at least say "you might consider trying biking if you feel able, there was this study..."

But what I am wondering is, if clinical trial participation is as bad as they would have us believe, why aren't the neuros talking to their patients about it? I have to admit, our guy has NEVER talked about a clinical trial, he doesn't even know what is being tested out there! Incredible, but true...if I mention anything I've read about, we always get "I haven't heard anything about it" which always astounds me. Why is this? Big pharma reps see these docs all the time, why aren't upcoming trials being mentioned?

This is a bigger issue, of course, than one visit with one doctor. I guess my point in all of this is that it has always seemd to me that we have to educate ourselves about our condition, and quality of life issues, unfortunately, do not seem to be any different. Sadly.

I am going to come to Lindy's message by a round about route and begin by describing my own neuro non-encounter from yesterday, as well.

I last saw her in August of last year and was scheduled to see her again in February. I was forced to reschedule and then to cancel with the expectation of calling for a new appointment once my own conflict was resolved. I did so in mid-March and was given an appointment for May 27. I shortly realized that I would be out of Requip before then. I am on an assistance program it and there is lead time, so the first of April I called back to deal with that.

I was informed that she would be out of the country for the month, that no one was covering her practice, and that I was out of luck. I had enough to make the half-way point, so I did as much prep with her staff as I could and waited. She was back in the office this past Monday, I called Tuesday with three days of Requip remaining and was told that she would not issue a new prescription until I kept the new appointment. I kept my cool in discussing with her assistant the implications of suddenly stopping a maxxed out drug habit. I was advised to contact my GP and see if he would help. Goodbye.

My GP is covering me and arranging a referral to a different neuro that I requested. Which brings meback to Lindy, sort of. Once I am sure that the other neuro is lined up and records transferred, I'm going to write two letters. One is to the new guy introducing myself and lining out the things that I would like to cover at the appointment. The other to my ex-neuro explaining what a sorry excuse for a doctor she is and forwrding a copy to my state regulatory board.

I think that I will make it a practice to write two letters with each visit with the new guy. One to remind him who I am and lay out my concerns. Another afterward thanking him and covering anything I find confusing. Maybe some form of that communication would help in other cases.

Lindy: Thanks for resurrecting this thread.
I was just about out of ideas for that mystery book no one seems to know about. I hope the thread will continue from this point because I need more material from posts. I am prepared to incorporate any material that will not trigger a lawsuit from a neurologist or their professional Association. I will also include an interesting perspective offered by some professional physical therapists about the impact vigorous exercise may have on PWP's. It will include my personal experiences in recovering from a serious fall including paralysis. So come on forum members, keep those stories coming. Bob C

As far as quality of life goes, Big problem, this parkinson's disease, and seems to be getting bigger almost everyday. I spend alot of my day now trying to figure out how to get stalevo, & requip to be at their most efficient. Many days I find it difficult to time my Stalevo doses so that I don't have food in my stomach, because... it won't work if I've eaten too much protein, or too much fat or just too much of anything. Last week I was in the middle of a dose of stalevo with pretty good control of symptoms, and silly me, I thought I might snack on a little Candy at the theater. Within about 10 minutes, it was as if I had no Stalevo on board at all, when it Should have lasted at least another 1 1/2 to 2 hours. I became stiff and basically shuffled until I managed to get another dose to kick in about an hour later. The other major problem seriously affecting my quality of life is the muscle cramping. No longer just affecting my toes, now it's in the shoulder, calves, and worst of all, my neck. It began last October. I am unable to turn my head without a great deal of pain. So now I cannot drive. I have seen my neurologist twice once in mid December and again in February. He is supposed to be tops in the field, and told me in December that he would adjust the meds and I'd be better. So for about three weeks the office nurse and I spoke about every other day. I adjusted the dosage, the timing, up and down, and nothing seemed to make me better. I requested that the nurse ask the MD about a muscle relaxer on at least three occasions, & I got no response, except, "he wants you to try this dose" After those three weeks I just kind of waited for my next appointment and tried not to turn my neck too much. In February I saw him again with the same problems as two months prior. This time I asked about a muscle relaxer, and again, none was prescribed and now he suggested PT and an MRI of the neck. Back to the internist and the MRI, which took another 3 weeks to actually get the report since the internist went on vacation, and nobody was able to give me the results before she saw them. MRI showed "bulging discs" and I thought, great, I'll do whatever, surgery, anything, to get rid of the pain. Well, the orthopod I next saw, said no, can't be why you're having all this pain. You need an MRI of your brain. That one, which thankfully, I got the results quickly, showed white matter in my brain which obviously didn't belong there. He thought I had MS, but I think more likely Amyloid or PD related. He says, see your neurologist asap. So, silly me, I call the "top guy" asking for an earlier appointment than a month away. of course there aren't any but the office staff would absolutely call me for any cancellations, and of course, hasn't called. I believe that our quality of life is dependent upon how responsive our physicians are to our needs, whether they listen or not to what we are saying. Someone recently told me a good doctor needs to be humble enough to learn from those he treats, and I agree. So my top guy who I do respect, is very smart, very up to date on meds, but is missing the point. Since I am feeling pretty much on my own with this disease, I recently weaned myself from Azilect, which the neurologist prescribed, so that later in the month I might be able to get an RX for a muscle relaxant, since many don't interact well with that drug. The next step for me is likely going to Mayo clinic for DBS evaluation. My quality of life is so poor that I feel like I'd do just about anything to feel at least semi normal, even if it means brain surgery. I am pretty angry with this disease as I'm sure you have noticed, and really dissapointed with the medical community. I think if physicians just spent one day trying to cope with this, they just might become humble enough to really get it and actually be able to help. I realize I have written a book here and appreciate the opportunity to vent. Thanks FG (ps today I started PT but don't hold out too much hope)

My husband responded to a physician friend's question about his neuro's treatment. He stated that his neuro very carefully chronicles the further deterioration of his central nervous system every 6 months.

I apologize in advance for being such a downer, but it is what it is. Finally got to see my neurologist today. I had my dear husband with me. This man is tops in the field and I respect his knowledge. I came away from my appointment feeling like the difficulties I have had over the past 6 months are somehow my fault, due to my not paying very close attention to whether I am on or off, & not being able to know for certain whether I am having dystonia or dykinesia and because I could not give him exact times when I experience the symptoms, since it varies from day to day. I explained that I can't get out of the bed at night to use the restroom, because I am so stiff, and hurting & that once I finally do get up, and start shuffling, it's usually too late to avoid incontinence. I told him that I spent part of my daughter's wedding last week in a wheelchair because all of a sudden the meds stopped working.I felt humiliated and I held up the wedding. I explained that I cannot tell what's going on half the time because the meds are taking 1-2 hours now to kick in and I can't tell how long they will last. Last month another physician told me to be sure that my Neuro. got my MRI of the brain and neck reports asap.He was concerned because the tests were not normal. The neuro took one look & dismissed them as "nothing" One of my blood tests was confusing to me and when I asked him, I was told to "ask the liver Dr" I was given a written detailed schedule to follow. I was close to tears most of the visit. It felt like I was annoying him. Now I am sure I am much too sensitive. I cannot get another physician at this point. I am certain that my expectations are much too high. I used to be a hospice nurse. The dying are totally powerless, and pretty much at the mercy of other people & their caregivers. During these past several months I think I now understand some of what those folks went through. I always thought it was a lack of money that causes a person to feel powerless, but now I think differently. I think it's being treated like your ideas and feelings DO NOT MATTER. As I said, I am sure I am much too sensitive, and this disease has definitely had an impact on that. I hope that in the years I worked as a nurse that I never treated a patient in the manner that I feel I was treated today. I wanted to walk away, I felt really little and about as important as an ant. Anyhow I think the Mayo clinic for DBS might be in my near future. I continue to HATE this disease, but I have to admit, it's causing me to think about things I never would have considered, had I not gotten it. Thanks, FG