Parkinson's Disease Support Group

Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...

509 Members

3,338 Posts

0 Online

PSullivan 02/23/2016

Hi all! This is for those of you that have or have had the same neurologist for 4 years or more. I have been with mine now since 2009. He is one of the best movement disorder secialists in the midwest. I know he is extremely busy on the lecture circuit now and in fact not taking new patients there is a huge waiting list for him. BUT.... I feel like my visits are not what they use to be. He still listens to all my concerns and changes i'm exeriencing but with a charming smile and a wink dismisses them without a good explanation. then he mandates the med change and says if there is a problem call my nurse and I will see you in six weeks . I don't get it and wonder if anyone else noticed a nonchalant attitude change in there doc after they've seen him a while?
In my case I feel like he's just not hearing me and this next visit i will let him know this. I feel like i'm communicating the way i always do but getting blown off!! He's gonna get an earful this visit for sure..

hugs all,
Paula

terrapinstation945 02/23/2016

YES YES YES........after awhile no matter what doc ive had....theres about a 2-4 year honeymoon and after that they do exactly as you describe. I am certain at this point that I'm being written off and dismissed as if I were a lost cause.....the only tools they have for us are pills and so allopathic docs just progress with meds and the patient be damned. its a horrible feeling.

You describe my situation exactly.....unbelievable

Peace
BT

terrapinstation945 02/23/2016

my wife goes to my appt's now to jump their s@#$ if they say crap like.....you look great! or other stupid crap like "look how good MJF is" youll be fine ...as I cant breathe and stare at him like hes a fool.

BT

Birdyfeather 02/23/2016

Have been going to the same neuro for 4 years every 6 months. Takes 1 1/2 hours to drive there, and I do not think it is worth it at all. Would like to go just once a year. Don't know if he would agree to that or not. All he really does is prescribe the meds., checks my walking, foot tapping and my hand movement. I believe he is a good doctor. He does not believe in over medicating, which I am thankful for.

terrapinstation945 02/23/2016

I reduced my mvmnt guy to once a year now....your lucky your not overmedicated maybe that's a reason that you score so well on the updrs.......

BT

deleted_user 02/24/2016

I was forced to change my neurologist after my previous one left the practice for research. I was upset at the time but found the new one was much better than my old one even though he wasn't a PD specialist. He is a good listener which I think is important in choosing any doctor. Last time he had a trainee with him. I hope he learns to be a good listener too.

I worry about the over use of physician assistants though. I was at my PCP yesterday and he had a trainee too. I was in an out of the office too fast. It was only a BP check but I had planned to ask another question but of course forgot in the rush.

terrapinstation945 02/24/2016

I'm the opposite, I prefer my PA to my docs, she listens more, she knows more....my PA caught my collapsing lungs with her steth the day after my Dr listened to my chest and heard nothing........so go figure......of course we are on an island and there is no wait time to see a Dr or PA , the waiting room has no more than 1 person in it and if you show up 1/2 hr early you get seen 1/2 hr early...so different Dr office dynamic.....

peace

BT

PSullivan 03/20/2016

Thanks for the input...I go to see my neuro this tues. I've been going back and forth about whether it's time to switch because the trust level just isn't there anyore. BT I've been thinking about what you said (and btw i like his PA a lot) reducing your visits to once a year and i'mm thinking now maybe I should just wean off this guy and if it works with less visits fine if not then maybe it's time to move on. I just hate the thought of starting all over

terrapinstation945 03/21/2016

Yes trying to develop a relationship with a dr is so hard .....mostly I feel like they just see me as a nuisance....ive had a couple really great dr's in my life but these days they are scarce as hens teeth.....seeing my mvmnt guy or pulmonologist or neuro is an exercise in futility and or the acquisition of as many medications as I can carry in a grocery bag...

be strong...

BT

BT

PSullivan 03/24/2016

Well I saw my Neuro yesterday and he must have heard or felt that i have been contemplating changing docs. He was so attentive an answered every question... spent lots of extra time with me. The only problem was this was the first time my husband could not go with me as he had to go out of town for his job. I had my list of questions and concerns written down so I thought I was all set. Like I said he answered all my questions. The problem was I usually ha Bill there to remember what he said because as soon as I left the office it was all gone. Like a bucket with a big whole in it the contents were gone before I reached the car. I am trying to piece together what he did say but it's not making sense. I guess if i ever have to go again I will record it .

terrapinstation945 03/24/2016

Bummer! my neuro writes down all the answers to my questions that I ask then gives me the paper when I leave with everything written out....but alas...those kind of Docs are becoming extinct. I long for the day of Marcus Welby MD...heheehehehe....comes right to your house.

peace

BT

PSullivan 03/25/2016

Yeah Marcus was the best!!!

donice57 03/29/2016

Yes....I totally agree...as a registered nurse this ticks me off...what really frosts my cake is when I am told certain drugs are not advised because of their addictive tendencies. ...what the heck..really...here's your sign? Puhlease...walk in my shoes...suffer through what I call the squirmes and no matter how hard you try to sit still..you cant...you wiggle so much hair is soaking wet...you can wring out my clothes...people stare..and I hear about addiction....argggggg

Birdyfeather 03/16/2019

My Doctor, I feel, is exactly the same way. I feel that he just ignores most of what I say. Oh, by the way, I have not been on here for about 7 years. Was glad to see you again. I lost Daily Strength when they made the big change. Was surprised to see that I was still on here. My husband died in October,2016 of Pancreatic Cancer. Caused me a lot of stress and I believe progression of this Parkinson's. I now have a balance and blurred vision problem and keep falling. Just walking slowly, carefully and praying a lot.

krystell 03/17/2019

Same Neuro since 2008. He spends no less than 45 min @visit between the physical examination, review of labs and drafting letters of referrals to other specialists. I’m very happy with him!

Birdyfeather 03/21/2019

krystell, Sounds like you have a very good Doctor. You are very fortunate, Cherish him because they are hard to find.

Join the Conversation