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Superdecooper

Who's on your healthcare team?

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So, I'm building a support system for myself of medical professionals I can rely on to help when things spiral out of control. Preferably those comfortable enough to talk with me by email or phone, without having to schedule an appointment that could be weeks away. But if not, who are at least willing to get me in for an appointment within days, not weeks.

So far, I've got:

Two physical therapists - who treat PD and have given personal emails to contact them; also supplied me with loads of specialized exercise information.

A Neuropsychiatrist - who I see twice a month, or less, who will talk by email.

A general practitioner doc - who will see me the same day that I call.

A chiropractor - who will see me the same day.

An MDS - who sees me every three months, but also will contact me by phone and email pretty quickly

I'm looking for a nutritionist.

Did I leave any medical professional out?

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Impressive! My MDS is great and starting our exercise program has allowed me to meet OT & PT. 

And my son is a PA and my sister is a PT. 😊

LAD

Edited by LAD

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My "team" is a movement disorder specialist and I try to go as little as possible.  I really don't like getting sucked into the medical industrial complex.  Just another point of view - not meant to be critical of those who like going to the doctor.  Gardener

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On 8/29/2018 at 9:27 AM, Gardener said:

My "team" is a movement disorder specialist and I try to go as little as possible.  I really don't like getting sucked into the medical industrial complex.  Just another point of view - not meant to be critical of those who like going to the doctor.  Gardener

My MDS wants me to come in 3x per year.  Between the drive and the cost (deductible on my insurance) I'm not going more than twice a year, unless something comes up that compels an extra visit.

 

Other than that, to SDC's question, I have a family doc that I rarely see for myself (kids go in each year though).  Chiropractor that's unfortunately just as far away as my MDS, so I can't get in nearly as often as I otherwise would (did go just a couple days ago as I'd apparently sprained my neck playing golf for the first time in almost a decade).  I don't have a PT, or a nutritionist.  There is a neuropsychiatrist that is part of my MDS's group, but thus far I've seen him once, and that was just for a baseline evaluation.  Similar to the PT, ST and OT groups.  I'll only see those folks for an acute need if one comes up, or perhaps every 5 years to document progression.

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Hi Gardner,

To each his own. I hate going to the doctors almost as much as I hate taking pills. But I do it anyway for my loved ones. I've had several family members who avoided the "medical industrial complex" (no physical exams, no routine visits, no follow ups for testing, no mental health care).. ... leading to early graves, some as young as 46.

LAD, seems like you got a family connection going on and Stump - seems like you must live in an area with not a lot of local medical care, plus the kids always come first. I get it.

In addition to my list above, I also have a cardiologist, an ENT doc, and a couple of massage therapists. I'll  probably add an acupuncture doc and maybe a personal trainer, soon. But I'm pretty physically active. I swim six miles a week and walk about 10 miles a week. I've been an amateur athlete for most of my life with a natural affinity for competitive sports like martial arts, weight lifting, etc.

I'm just a few years shy of 60. Regardless of PD, I don't plan on going quietly into that goodnight.

-S

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On 8/29/2018 at 12:27 PM, Gardener said:

My "team" is a movement disorder specialist and I try to go as little as possible.  I really don't like getting sucked into the medical industrial complex.  Just another point of view - not meant to be critical of those who like going to the doctor.  Gardener

Hi Gardner,

It's to bad integrity  has declined so much today in medicine..Money sure does play the major part today in our local parkinson care.I've been getting along well,havnt seen a PD doctor over a year.last call for my comtan it was declined as inappropriate.This is the way center of excellence operates today.

My major concern are for those who lost control of their meds and are now in nursing homes.One wasn't doing so bad but got talked into and now is in a very perilous state.He Has been very confused yet also walks without support,never falls or has no difficulty swallowing his food or choking.Yet I was told by this family member that he is on a fast decline.I also know he is medicated to control his med caused confusion.he also has lost a lot of weight.he also is carried for by our local center of confusion clinic.

I turned his case into a patient advocate and waiting if he will be helped.Others here are either unmedicated or over medicated.Most should not be in any nursimh home if they had compassionate care.

Also no help from the parkinson foundation,national or local.

One idea I have is starting a PD org run by us and hire our own doctors who have no connection withe corporate state of medicene.

We could also hire our researchers also.

Things will get better if everyone votes.

 

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On 9/2/2018 at 5:42 AM, Superdecooper said:

Stump - seems like you must live in an area with not a lot of local medical care, plus the kids always come first. I get it.

Not really.  More my choice, combines with knowing there's not really any great data on any particular diet or exercise being better for PD, so I just follow general health guidelines.

 

On 9/2/2018 at 5:42 AM, Superdecooper said:

In addition to my list above, I also have a cardiologist, an ENT doc, and a couple of massage therapists. 

By the time I'm mid-50's to early 60's I'll need to get hooked up with a cardiologist.  Both grandfathers died of heart attacks in the morning doing yard work/gardening (one at 69 one at 74), one grandmother had a massive stroke at 70 followed by a heart attack (she somehow lived to 80).  Plus my dad and one of his sisters had to get multiple stents at 69-70.  My dad's other sister had a major stroke in her 40's, though that was due to a blood clot that formed after a serious accident.  

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9 hours ago, John Hoefen said:

I turned his case into a patient advocate and waiting if he will be helped.Others here are either unmedicated or over medicated.Most should not be in any nursimh home if they had compassionate care.

I hope your friend gets the help he needs, John. It must be distressing to witness situations like this and feel there is little you can do to help. He is lucky to have such a caring friend in you. 

 

9 hours ago, John Hoefen said:

One idea I have is starting a PD org run by us

This sounds like a big undertaking, but I do think it is worthwhile to give feedback to the organizations that already exist about what our needs are and where there are unmet needs. The Davis Phinney Foundation is focused on living well with PD; maybe they would be responsive to a request from you. 

As a single person who lives alone, I can only hope that when I need more care there will be an advocate to help me as you are trying to help your friend. I think an organization to provide advocacy--either a separate organization or one under the umbrella of an existing organization--could be a great help. Even for those who have carers, it can be daunting trying to navigate the medical system (in any country) in addition to all the other responsibilities of caregiving. So, I really do like the idea of having an organization of patient advocates who could help with these kinds of issues. 

Thank you for your post, John. 

Diana

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Recommend an Occupational Therapist and a Speech Therapist. We've found a specialist in Internal Medicine is best for the "family doc". Finding a urologist that knows PD has been challenging. For the nutritionist be sure to locate a "Registered Dietitian Nutritionist (RDN)" who works with PD patients. Here is a place to start: https://www.eatright.org/find-an-expert 

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21 minutes ago, Golden01 said:

Recommend an Occupational Therapist and a Speech Therapist. We've found a specialist in Internal Medicine is best for the "family doc". Finding a urologist that knows PD has been challenging. For the nutritionist be sure to locate a "Registered Dietitian Nutritionist (RDN)" who works with PD patients. Here is a place to start: https://www.eatright.org/find-an-expert 

Thanks this was helpful.

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