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Rosepetal

What would you like to know?

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Dear Community,

 

    First I would like to thank you in advance for reading this. As a future health care professional and a follower of the belief of the art of caring I would love to receive opinions about some of the questions that cross your mind when being diagnosed with Parkinson's. What would you like to ask or what kind of information would you like to receive from your family physician that would go above and beyond your expectations while being seen at the office? What else would you expect from your physician?

 

    The reason I am asking is because I have a presentation to give about patient education when diagnosed with parkinson's. I could just do my research about the diagnosis and include such things as I would suggest to my patient to find a support group but I want to go further than that and educate my classmates about what patients who are actually diagnosed with Parkinson's want from their doctor. So I need and would appreciate your input. 

 

   I hope that it is ok to ask this community for help. I think if healthcare providers just stop and listen to what their patients really need and want, it would be a positive outcome for both the patient and the caregiver. 

 

  Thank you for your time.

 

 

Rose K.

D.O. 2018 Candidate

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Hi Rose,

I recently posted a thread here,If I were a PD doctor,I think there might be some answers for you there.Im sure many here can add alot also,PD care has been very difficult for me,I'm so glad your interested in improving our healthcare.

best

john

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how interesting that you are making this unique approach.   for me, i was diagnosed in my early 60's, but had tremors for at least 10 years, and had been getting other confusing symptoms for two years or so that made me study parkinsons, because it was patently obvious to me, at least, that this would probably be my diagnosis.   stuttering, freezing while walking, falling, running into the walls, unable to let go of things, many symptoms,    so when my dr. sent me to my neurologist, and i had an MRI, and then in office things like gait, neuro tests, memory tests, other tests that i no longer can remember, because, well, i have parkinsons.      when he finally finished and sat me back and told me my diagnosis, i was calm and a bit relieved.  having a name for confusing physical and mental changes, was really better than just failing with no idea why.         i really only wanted a brief idea of what i might expect….over the next few years…….and an even briefer idea of what could happen later on.        it had come on slowly enough that he felt i would not be hit really hard immediately, but gave a short synopsis of what i could expect in broad strokes, what medications i would be started with, what the side effects might be, and then a brief talk on what could be done if things got particularly bad, such as deep brain stimulation.     things progressed a little quicker, drugs were changed, symptoms corralled.

 

i have read on this site that many people wanted a lot of information, so i hope they write you.   i just wanted to know what to expect in several year increments.   didn't need to dwell on the future.   i find parkinsons to cover an enormous array of possible symptoms, and if something is bothering me, i come to here and read if others are experiencing similar things.   i find that very comforting.                      my relationship with my general MD is long and close, and he put me in touch with a kind and gentle and smart neuro, whose opinion i value and trust.   if i need him, i can e-mail him and get a reply immediately.  if he wants to see me, or vice versa, then an appt. is made.    i now live an hour and a half to two hours away from both of my drs., but feel they are both there for me …..always.

 

so, i guess you will get varied accounts of what patients want to know and hear.  i felt comforted that i would be in good hands, that my progression would probably be fairly slow ( great to hear……..and for the most part consistent with what i am running across ), and that these sites are invaluable. nothing like talking to those in the same boat.              good luck, lu

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The fact is, doctors and specialists these days are generally far to busy to provide the kind of care and empathy needed when a person is first diagnosed with Parkinson's (or MS, ALS, etc). They have way too many patients to see in a day, and not enough time to spend with them. It's not that they wouldn't WANT to, it's just the system that's in place today. Move 'em in, allow for 15 minutes of examination and assessment, and on to the next patient.

I'm not actually sure that change is possible, but my suggestion would be that upon diagnosis by a qualified MDS, the patient should be given enough good information to read, websites and links to PD info, and contact info for support groups. THEN, a follow up appointment made for the VERY NEXT WEEK, again with the MDS, to answer the many questions that will pop up after the initial shock of the diagnosis has settled in. Believe me, when first given the diagnosis , MOST patients are fairly dumbfounded and have no idea what to ask....it takes about a week to settle in and for you to come to terms with it. THEN the questions come. LOTS of them.

Given a diagnosis one day, then a follow up appointment in 3 or 6 months just doesn't cut it.

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I lucked out with an excellent MDS.

 

Referred by my PCP. First appointment was two hours.  Well I was fairly along with PD, so "It walks like a duck, it quacks like a duck.... it must be.... " which makes life easier on the MDS.

 

Since there are many things that could be the reason for Parkinson's like symptoms, her initial diagnoses (printed paper was given to me) was "Suspect PD, suspect Dystonia, suspect Essential Tremors".   So it was time to get a MRI (rule out anything else), heavy metal testing, blood work up.    I was refereed to a sleep Doctor (one roof, many specialties) for a sleep study.  Follow up in four weeks.

 

Follow up appointment was a good 30 minutes, not rushed. 

 

By the time I was 20, I had the classic non swinging arm.  Doc's had commented my reflexes were subdued.  On Physician even commented that if I was much older he would suspect Parkinson's, but I was way too young for that!  I was an avid cyclist, so I kept on cycling! I could have probably started on sinemet much earlier, but wasn't until balance was impacted that I had even thought something was "off". 

 

So back to your question "What does a patient want".... the "Suspect PD" got the ball rolling for me into learning more about PD.  So four week until a followup was actually perfect to get all the other, exclusionary, testing done and give me time to wrap my head around the fact my life will change.    I had a very minor decline over 30 years, and it stepped up a notch over the last five years.   With the PD, Dystonia, and ET.... different area's of the brain, so more than one region affected.  One day at a time.

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I would have liked more specific information about what kind of lifestyle changes should be made post diagnosis. Of course you don't want to throw too much at the patient early on, but just saying eat right and get some exercise is not enough. It's taken me a while but thanks to the internet, and this forum in particular, I now have a better understanding of how diet might effect the disease and which supplements may help. Now, I understand that there is no definitive research out there that can give doctors the confidence they might feel they need to start giving advice along these lines, but I certainly would have liked to know a little earlier about some of the things I should be looking into to either slow or stop progression.

 

Also I am still looking for more information about what epigenetic factors might play a role in the onset and progression of the disease for people who have specific variants in their genes.

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If you are asking what information a family physician could provide following a PD diagnoses, my experience (and that of many others here) is family docs often don't know enough about PD to reliably diagnose it in the first place. This seems especially the case for YOPD.

 

So my advice for family docs would be, first: increase their own awareness about PD, including that it regularly affects people in their 30s and 40s (20s, even); and second: refer patients to a good MDS when possible PD symptoms are present, rather than offer false reassurances (i.e., 'It's probably just essential tremor' or 'you're too young for PD').

 

At this point, five months post-diagnosis, I'm pretty sure I know more about PD (at least my own) than my family doc. And that's okay. I do appreciate that at my last physical he treated the fact that I have PD in a very straightforward, matter-of-fact way. 

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1.  I'd like to have known what a Movement Disorders Specialist is.

 

2.  Before taking the prescribed sinemet by the neurologist I saw (who was absolutely fantastic), I would have wanted to first be under the care of the MDS for whom I had to wait a month or two to see.  Starting the medicine really scared me, and I did wait a month before starting it. It would have helped me to know (and I should have thought to ask) if an MDS oversees all of the symptoms of Parkinson's.  I had never heard of an MDS before.  Although I took the dx in stride, as I highly suspected PD, I didn't know much about it.  After I got home and looked on line I realized that I needed to know a lot more about the parts of the PD the MDS attends, and whether there are other MDs or therapists for the rest.  I  think it may be mainly because of suddenly so many of us being definitely diagnosed with PD that the health system is being flooded by us, and it will take some more time for MDSs to be trained and to come into the health system.  I'm glad you chose this route. We need you!  And your idea of asking us for our input is such a good idea.  Thank you.

 

3.  If seeing a PCP about symptoms before even thinking it could be PD, it would be good for the PCPs to be more well versed in PD symptoms and consider PD a possibility.  For years I tried to find out what was wrong with me, especially the fatigue and low energy.  One NP flippantly said I should get more sleep.   My PCP did listen to me over the years and decided to try to get to the bottom of what was going on and see if all my symptoms may be related to one thing.  She sent me to have testing for many things--MRIs, x-rays, blood tests, and anything she could think of.  And fortunately, because of her due diligence in doing so, it was found I have a meningioma (and another one forming), as well as increasingly extremely high blood counts which really alarmed her, and she sent me to a  hematologist who dx'd polycythemia rubra vera (PV)  She also saw I had low Vitamin D.  I often think she may have really saved my life by recommending all that testing, because if the PV had not been caught, it could quite possibly have led to advanced complications or even early death.  The meningioma would have been unknown and would not have been followed for possible intrusion into the areas around it.  And of course we are reading more and more about how many things are affected by low Vitamin D.  I feel so very fortunate for her help. 

 

4.  And I forgot to mention that it was my neurological and cancer surgeon (whose care I was now under for the meningiomas) who suggested I see a neurologist when I asked him if the meningiomas could be causing my hand to shake so badly.  He said no, and that's when he thought I should see a neurologist.

 

It's been an adventure, I must say.

Edited by Linda Garren

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Exercise as an adjunct was not mentioned to me, but then i was already active, but it wasn't really discussed.  i was told to take dopamine with meals.  i have since read here that it is best taken with a carbohydrate, not protein.  my neurologist keeps telling me that there are a lot of folks out there with PD that are doing great.  he infers that my depression, inability to cope with stress and insomnia are personality traits that i have, not part of the PD.  Because my right arm paralysis has been mitigated by the Sinemet, he says, well, that's great, good enough eh? and when i complained of a new dystonia in my hip he said outright it must be psychological because the Sinemet cured the rigidity in my arm!  He did not seem to think my olfactory issues were related to the PD and just shrugged.  When i told him i saw that others on this site cited similar olfactory problems he suggested that i not go to this site.  I am grateful that he has prescribed Sinemet for me.  and then Neurontin for the "pain" of the dystonia so i can sleep at night.  And admittedly i don't look like i have PD yet.  good enough, eh?

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I like MusicMan's idea of a follow-up appt. fairly soon after initial Dx.  My appts are 6 months apart, and I had many, many questions after my first appt.

 

Within the clinic where my MDS is, there are staff that put on free workshops .. one specifically for Newly Diagnosed and it is very good.  I was given a folder of resource booklets and papers after my 1st appointment .. I wish there would have been a single piece of paper (a Flyer) advising me of the Newly Diagnosed workshop.  I was told about it from a friend .. but if that wouldn't have happened, I doubt I would have heard about it right away.  The website is fairly dense and it's difficult to find things in it.

 

This is where Support Groups can help.  Recently, we've had a lot of new people join our group .. with a lot of questions.  Because I am still fairly fresh from the 'newness', I reached out to our facilitator wondering if we should send out the link for the new members of our group.  I am glad I did because she hadn't thought of it.  I think that happens frequently when people have been fighting the fight for a length of time .. it's normal to forget the beginning.

 

Rosepetal, thank you for thinking outside the box and reaching out to the Forum.  You should do very well!

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Exercise as an adjunct was not mentioned to me, but then i was already active, but it wasn't really discussed.  i was told to take dopamine with meals.  i have since read here that it is best taken with a carbohydrate, not protein.  my neurologist keeps telling me that there are a lot of folks out there with PD that are doing great.  he infers that my depression, inability to cope with stress and insomnia are personality traits that i have, not part of the PD.  Because my right arm paralysis has been mitigated by the Sinemet, he says, well, that's great, good enough eh? and when i complained of a new dystonia in my hip he said outright it must be psychological because the Sinemet cured the rigidity in my arm!  He did not seem to think my olfactory issues were related to the PD and just shrugged.  When i told him i saw that others on this site cited similar olfactory problems he suggested that i not go to this site.  I am grateful that he has prescribed Sinemet for me.  and then Neurontin for the "pain" of the dystonia so i can sleep at night.  And admittedly i don't look like i have PD yet.  good enough, eh?

 

I get little effect from mixing anything but water  and wait a half hous before I eat ,protein at least a hour afterwards.The better we keep the drug capable the less me will need and have fewer sideeffects in the future.

People suffer from nervousy symptoms because they have a "FATE GIVEN LOWERED  NERVOUS  RESISTANCE TO LIFE".It has nothing to do with their characteer or personality.Theyh ave "A ALLERGY TO TENSENESS"

Sinemet should help with dystonia if you are taking it correctly.

Parkinson affects the eye muscles(doublevision and depth perception)

Sites help but be careful as I stick to the NPF and Europeon sites

Just a little extra swimmer,so glad you have competent  care

:-P  :-P  :-P

 

Edited by johnnys
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Thank you Johnnys,  your feedback was very helpful.    Rose:  i guess i didn't answer your question, just whined a bit about how misunderstood i feel.   I think that as a doctor you should approach your PWPs with the understanding that it is a lonely plight.  And a terrible blow.  Then be supportive and give reasonable hope.  I was dazzled by my response to the Sinemet.  But the excitement wore off as other realizations arose. The horror of "it's a progressive disease" sinks in. No one fully understands.  The closest i have found is on this site. I have learned that we all manifest it in different ways and present with different (those that are obvious and those that are obscure) symptoms.  I have seen it referred to as the snowflake disease on this site.  And truly, no two are alike.  I think that your patients would appreciate knowing that on their first visit.  I see very brave people here.  I feel less than courageous.  But have learned to take one day at a time.  Live in the now.  Be grateful for what i can do.  Every stage of grief is experienced, transcended, and revisited.  There is no right way to be a patient with Parkinson's.   Mindful meditation is very helpful.  Exercise is important.  Diet.  Sleep. Keeping communication with your loved ones:  including defending your solitude and need for rest and recovery.  There was a story here of a guy who soldiered on and the family took him and his income for granted, and when he reached a breaking point his wife just didn't get it. I know, i digress, but i guess i am saying the whole patient is affected, not just an arm or a leg.  And when you see progress in the arm or leg that is not the end of the story for them. or you as their physician.

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