Parkinson's: Building an Interdisciplinary Team

 

Snarky Parky & me

A Journey Into Parkinson's with Nancy Mellon

Coordinated by Corrine Bayraktaroglu

Building a Team

“In a perfect world, all people with Parkinson’s disease would be seen at a Center of Excellance by an interdisciplinary team.  Research has shown that people with PD do better if they see someone who knows a lot about Parkinson’s.”

 I am very tired today. I've been up since 4 and feel like a brown splat on the cement. (Yes, that is the cleaned up version of what I started to write.)

My nights are getting progressively screwy again. EEEEEYUCH! I'm actually too bushed to say that loudly with drama. Dang, that might have been satisfying.  Nah.  Too pooped for drama.

OK, here is where you might want to go and get a cup of tea- because I feel a major whine coming on.

I don't know what is going on. For weeks, I have been feeling like I am battling the Snark at night. And the stinker, is also grabbing my attention many times a day.  I have noticed that after I take my medicine, it can take me an hour to slowly start to function better and then 2 hours later, I am already starting a downhill dive.  I do that 3 times a day and then I am on my own for the hours from 8pm -Midnight. I take 2 long acting pills at 10.  Two hours later, they kick in and my muscles stop twitching and I stop doing the twist in bed.  But I don't always go to sleep.  Or I do, but I am up again sometime between 4-7 am. Not always- Lots of  differences in what happens. There are better nights and better days but if it were on a chart, the line would be going down.

It is time to check in with my team.

Rant done. Hope you had a 'nice cuppa' as Corrine would say.

About that Team word.  Everything I've read and every webinar about Parkinson's talks about you setting up your Team.  It is, in the best world possible, at a Parkinson's Center of Excellence. (That is a designation that the Parkinson's Foundation gives places that have jumped through a lot of hoops. The Cleveland Clinic has that designation. It has a team of specialists in Parkinson's.  It is very tempting for me to check it out. BUT it is 4 hours away.

This is the team that the Parkinson's Foundation suggests:

Movement Disorders Specialist-Movement disorders specialists are neurologists who specialize in conditions such as Parkinson's disease and have experience treating it at every stage. The Parkinson's Foundation recommends that people diagnosed with PD make a movement disorders doctor your regular PD doctor.

People with Parkinson’s may constitute 50 percent or more of a specialist’s practice. With this level of experience, a movement disorders specialist will be more familiar with the range of available Parkinson’s medications, how they work and possible side effects.

Speech-Language Pathologist-Speech-language pathologists assess and treat communication, speech and swallowing problems. These therapists can help ease PD-related speaking and eating challenges if they arise.

Physical Therapist- Physical therapists help people living with PD maintain or regain mobility. They develop customized exercises to address walking, balance, posture, flexibility and strength challenges associated with Parkinson's. A physical therapist can also provide ways to prevent freezing and falls.

Occupational Therapist-An occupational therapist can help change your home or work environment, your approach to tasks and even the tasks themselves to meet any PD-related challenges. Occupational therapists can also help you find any assistive devices — from a swivel seat for your car to a specialized computer mouse — suited to your needs.

Social Worker-Social workers offer counseling services to individuals, couples and families. A social worker can also help sort out and resolve insurance, housing and disability issues.

Nutritionist-Nutritionists can suggest optimal foods to help you continue to live well with Parkinson's. A nutritionist or dietician can also be helpful if you have trouble chewing or swallowing, difficulty preparing nutritious meals or problems with your weight.

Other Specialists-The services of complementary therapists and others can be helpful. If you're considering Deep Brain Stimulation (DBS) a neurosurgeon and neuropsychologist will become members of your team.   Consider adding a mental health professional to your team to help address mood changes and coping with PD.

So how does my team stack up?  

Movement Specialist -got one 

A Physical Therapist -looking for one

An Occupational Therapist-maybe I'll get one, when I get the PT??

A Speech Therapist,-working with one? I know the 2 women I have taken from/am taking a PD speech and singing class and a PD choir class are PD Speech Specialists but they do not sound like the speech -language pathologist listed above.

A Nutritionist- um no, had a referral but didn't do anything about it

A Mental Health professional- looked for a CBT Therapist, found one, liked her but stopped because she wasn't teaching me Cognitive Behavior Therapy.  Probably need to look again

A Skin Specialist- I know it is not on the list above, but People with Parkinson's get skin cancer more than the regular Joe or in this case Josephena. got one

And this past week we began a hunt for a Neuro Ophthalmologist! My eyes have been changing fast.  Is it aging or is it Parkinson's? I have an ophthalmologist that I like,  that I go to yearly, but seeing him has not answered my concerns.  (Which by the by, Steven checked with the Cleveland Clinic, it has only one neuro ophthalmologist and he is not trained to work with Parkinson's patients!)

And of course, I need a regular GP Doctor-Got one.

In general, my team is lacking a few important components.

I'm on a 6 weeks waiting list.  I was looking for a Physical Therapist to start a relationship with.  I could have asked for a referral from my Movement Specialist. But she is in Columbus, over an hour away and I'd prefer one closer. I also could have called the  Parkinson's  Foundation help line 1-800-4PD-INFO (1-800-473-4636).  They can tell you about specialists in your area.

Instead,  I asked the other people in my PD Dance group if anyone was seeing a physical therapist who had a specialty for Parkinson's. And Bingo! Steve goes to the NeuroRehab and Balance Center. (Thank you Steve!)  It is an outpatient facility with PT, OT and speech therapy that specializes in treating patients with neurological disorders. Their physical therapists and assistants are all experienced in treating patients with PD. It is about 30 minutes a way, which is  farther than I want but not awful. 

And I can get 3 of my team there- PT, OT, and Speech- Woohooo!

I'm going to let the final words be from the Parkinson's Foundation again:

People living with Parkinson's benefit most from a comprehensive, team-based healthcare approach.  Having a group of medically diverse experts effectively managing your PD symptoms can maximize your quality of life. While some people find all of their specialists in one practice, in most cases, you will build your care team over time.

OK my friends, go forth and build your care team,

Cheers,

Nancy and the Snark

 

Footnotes From Corrine - What can I say except I LOVE YOU. I wish I was there, sharing a cuppa and just holding a seat with you in silence or a nice sweary fest at  snarky.