Palliative Care, Parkinson's Disease, Uncategorized

Meet Laura

whos-afraid-of-palliative-care

Who’s afraid of palliative care? My editor, of course. 

Mention palliative care to a Parkie, and most will recoil in real or imagined terror. The first mental association is to hospice and/or end-of-life care.

Here’s what my editor Laura (a tiny woman who in a flaky voice has vowed to kick Parkinson in the face) said about it:

“The word palliative makes me shudder…

“It sort of spells defeat. To me it says: ‘We have given up hope of curing you, so we just want to make you comfortable before your impending demise.’

“In fewer words: ‘Make yourself comfy and die.’

And she adds: “Yet, if I had a nasty, painful, end in sight, I guess I’d want to be palliated to the max”.

The fact is palliative care is undergoing a dramatic and sweeping overhaul. Rather than end-of-life, the focus is now on creating –and following through on– health care plans. Those start at diagnosis and proceed through a number of steps that include patient self-management, mid-stage plan alterations, family support and, finally, death with dignity.

Kirk Hall’s astute reframing of palliative care is well worth reading. This link takes you to his presentation to the World Parkinson Congress.  

Now more about Laura Crawford, my new blog partner, whose commitment to the PD SELF program is astonishing. Laura has all the graphic skills I do not. She also has a fertile and inventive mind about the presentation of ideas. Her illustrations have graced several of recent Shuffling Editor posts.  

I asked Laura to write about herself and her husband, Dan Crawford, a retired telco senior exec. The Crawfords live in New Port Richey, FL.

Now for Laura on Laura:

editor-in-the-sky

Gil Thelen has called me his editor. Those who know him realize that he is pulling my leg. 

But it opens up an opportunity to ask myself, “who am I?”

Fact and public confession is that I have always been a pushover.

Like in a line by T.S. Eliot, I have asked myself at every step: “Do I dare eat a peach? Do I dare disturb the Universe?”

To the concern of my parents and my teachers, since I learned to read my face was always behind a book (I was not a popular kid).

To keep safe behind the pages, I studied literature.

“I’m now licensed to read,” I marveled when I graduated, and went on to spend two decades in PR and media relations. In 2009 I started a communications agency in Mexico, from where I hail (my business partner was a designer, I wrote content). 

Then puff! Out of life’s box of surprises, I was diagnosed with Parkinson’s. 

After exclaiming: “Aha! That’s why I fell asleep in my client’s office!,” I thought I had arrived at my life journey’s last stop. 

But it has opened the best part so far. Parkinson’s forced me out of my old constrictions and into a physically and mentally challenging territory that I am just exploring. It’s sights can be terrifying and yet liberating. 

In early 2014 I left the office in my business partner’s hands, and my very wonderful husband, Dan, brought me to Florida to be treated at the UF Center for Movement Disorders and Neurorestoration.

There, Dr. Michael Okun warned me as he prescribed medication (and I’m very loosely paraphrasing this awesome neurologist):

“Watch out, for you might go gambling, stomp out in a sexual rampage or destroy your finances on a shopping spree.”

But I never thought my obsession would zero in on markers and sketch pads. To my surprise, my brain has turned to graphics. Instead of books I now buy art supplies; words were my life, but now I try to explain everything in form and color. 

So here I am, about to zap Gil with my blazing color pencils if he forgets a comma, ‘cause I’m learning to be assertive (and he’ll zap me back, because he is assertivier).

Anyway, I have embraced PD SELF because the program is great not only against Parkinson’s, but –more importantly— I trust it will help me get rid of that fear of living that shrivels our capacity to enjoy whatever life we have ahead.

PD scares me. But I want to kick him in the face and say, at the end, that my trek was good and that, even if I do it in a shaky/twirly gait, I walked it as myself in full.

A final word about the Congress: gathered were several thousand Parkies using canes, walkers, wheel chairs, walking poles, companion dogs, leg braces, to name but a few PD aids.

What those brave people have in common is one thing.

Hope.

Must Read, Palliative Care, Parkinson's Disease

What’s Your PD “plan”?

The “I” and “we” in this post are composites of my own experiences and those of the many Parkinson’s patients I have talked with since my diagnosis in 2014. This column is dedicated to the memory of the late Dr.Thomas Graboys, an extraordinary Boston physician who died with Parkinson’s disease. His legendary dedication to patient understanding and welfare is reflected in the care model I discuss.

Dear Doctor:

D-Day, diagnosis day, for my Parkinson’s was a disaster. Your words destroyed my rationalizations about what was causing my problems. Suddenly, I have a progressive neuromuscular disease, one that’s treatable but not curable.

I pressed you on prognosis. “At your age of 75, something else will kill you first,” you finally said. Your smile suggested humor. I found nothing funny or comforting in the words. Neither did a friend who was told on her D-Day: “You will only feel worse as this progresses.”

Another friend went to pieces after her D-Day.
choirbreathing
“My life began to unravel,” she recounted. “I became reckless, hell-bent on having a good time before the disease took complete control. I shopped libreathing

choirke crazy, partied and drank hard. I ignored mundane tasks, like paying bills and taking care of my house.”

Most of us only were told to follow instructions for beginning the medication carbidopa-levodopa and to return in three months. By that time, our response to the medication would seal the diagnosis. No other readily available laboratory test exists for PD.

That was it. Session over. No words about diet, exercise or any real information on the disease.

Your short message may be OK for other disease diagnoses you make. But I wanted and needed more from you because Parkinson’s often is a progressive wasting disease that would affect every aspect of living, as I had known it.

I wish you had said words to this effect, as Thomas Graboys did with his patients: “We are in this together. I will walk with you the whole way. I’m writing down my home number. Call when you need me.

“Here’s a short brochure providing you essential information about the disease, places to seek additional, verified information and a brief description of an organization available to you for your journey. The brochure briefly describes sharing your diagnosis with loved ones and others. I want you back in one month to dig more deeply into all this.”

You would say that patients who do well with the disease don’t let it own them—they own and control it. You don’t have to do this alone, you would say: “We will develop on that next visit what I call the ‘plan.’ ”

I wished you, my physician, would explain how there is an organization I could join that would have regular educational seminars about PD, special programs for caregivers and recommendations on finding the physical and other therapists who could attend to my needs.

You would say you would work closely with the organization to see that care provision was customized as needed. You would reduce my anxieties and provide an organizational anchor point where my needs would be met.

You would write out the medications you were recommending and what they were for. You would ask me what I thought was a reasonable exercise regimen within my abilities. We would discuss dietary and other lifestyle changes that would help me enhance my life. You would call it the “plan.”

It was the “contract” between you and me that, if adhered to, would help ensure a positive outcome. And because the “plan” was personal to each patient, it was more likely to be honored.

Just leaving the office with that plan in hand would inspire hope in me because implicit was the message that there were things I could do to take control of my illness.

Indeed, while there may have been three hundred words on that page, it really was just one: “hope.” The written plan would inspire hope that by following the instructions I could enhance my chances of living out a fairly normal life.

The Graboys approach and the Graboys “plan” are the exception in most clinical settings today.

The result is documented, widespread confusion among PD patients about their condition. A 2014 Harris survey of Parkinson’s patient showed that only 57% feel informed about how PD commonly progresses; just 46% feel informed about treatments for non-motor symptoms; and 54% feel informed about treatments for motor symptoms.

In other words, a stunningly high number of PD sufferers don’t understand what’s staring them in the face and what’s ahead for them.
The dedication of physicians for their Parkinson patients is not in question. In fact, as my Parkinson’s Disease Foundation colleague Kirk Hall has written, we PD patients owe the medical community a large debt of gratitude. “Many of these folks, whether they be doctors, nurses, researchers or technicians, work very hard to meet our needs in challenging circumstances (long hours, limits on length of patient visits, heavy patient loads, emergencies, bureaucracy, and unending paperwork.)”

What’s needed is a system for Parkinson’s care that those dedicated professionals can utilize. We don’t have it now but need it as soon as humanly possible

***********************************************************************

Check two workshops for Parkies. One for breathing exercise and the second for singing. Therapists are on both to slow the progression of PD. The word comes from speech therapist Cara Bryan, a Florida Hospital-Tampa stalwart, who is leaving FHT for private practice. Her many fans wish her the best. Click each for more info.


Breathing

Chior

 

Palliative Care, Parkinson's Disease, Parkinson's exercise, Research

TAMPA SEMINAR, BOXING UPDATE, RESEARCH MORSELS

FOX SEMINAR ON PD IN TAMPA FEB. 6

Partners in Parkinson’s is coming to Tampa on Saturday, February 6. The event features a full day of panel discussions, breakout sessions and a resource fair to connect you with clinicians, support and exercise groups and other resources right in the Tampa community.

WHERE:
Hilton Tampa Downtown
211 North Tampa Street
Tampa FL 833602

WHEN:
Saturday, February 6, 2016
8:00 a.m. – 3:30 p.m.

Partners in Parkinson’s events cover topics related to all stages of Parkinson’s disease. Whether you’re newly diagnosed or have been living with Parkinson’s for years, you will learn:
• How Parkinson’s impacts everyone differently, and how to tailor a care team that meets your specific needs
• What to know, ask and expect at an appointment with a movement disorder specialist
• Updates on the most promising Parkinson’s disease research
• How to live well with PD by incorporating diet and exercise into your lifestyle
• The benefits of staying connected to loved ones and to the community
Registration opens at 8 a.m. and a continental breakfast and lunch will be provided.

Visit http://partnersinparkinsons.org to learn more or RSVP today.

MY WEEK FOUR REPORT ON ROCK STEADY BOXING
After four weeks of Rock Steady Boxing experience, I am an even bigger fan. Working out 3x a week has improved my balance markedly and decreased blah days. My training mates offer the same positive assessment Do it if you can. See my earlier post for details.

AARP PRESIDENT BOOSTS PALLIATIVE CARE

Palliative Care, often the missing link in PD management gets a boost from the heavy-hitting AARP.

http://www.aarp.org/politics-society/advocacy/info-2015/palliative-care-living-with-dignity-english.html


IS GOLDEN OLDY ASPIRIN GOOD FOR PD?

Have a look at http://www.pdf.org/en/science_news/release/pr_1450710960

UPDATE ON NILOTINIB

My support group friend Doug Dear passes along these intriguing reports on the anti-cancer drug Nilotinib and its possibilitise for PD treatment:

http://www.npr.org/sections/health-shots/2015/10/17/448323916/can-a-cancer-drug-reverse-parkinsons-disease-and-dementia

https://gumc.georgetown.edu/news/Cancer-Drug-Improved-Cognition-and-Motor-Skills-in-Small-Parkinsons-Clinical-Trial

http://movementdisorders.ufhealth.org/2015/10/22/nilotinib-tasigna-for-parkinsons-questions-and-answers/

Palliative Care, Parkinson's Disease, Parkinson's exercise, Research, Uncategorized

TRAIN YOUR BRAIN WITH COMPUTER GAMES

The scientific journal Neurology has editorially endorsed computerized training as a way to slow or prevent cognitive decline in Parkinson’s. The endorsement is somewhat tentative but definitely a boost for Brain Hq-like computer training: “…… cognitive training is modestly effective for improving cognitive function in people with PD.” The editorial concludes: “Given that PD is more than just a movement disorder, cognitive training may be an important option for improving cognitive function in patients with PD.” USF’s School of Aging Studies has a computerized cognitive study underway of PD and is seeking volunteers. The principal investigator is Dr. Jerri Edwards. For more information call USF’s Cognitive Aging Lab at 813-974-6703.

Tampa JCC Wellness Program Launches Jan. 23

The Shuffling Editor has gotten more information on the Tampa Jewish Community Center/USF Health wellness program for Parkinson’s. Exercise classes begin Jan. 26, run for 12 weeks and cost $120.

Tuesdays from 11:30 AM to 12:30 PM is Nia, a new term to me. Wikipedia describes Nia thusly: “Nia dance cardio fitness classes are taught by instructors licensed in the Nia Technique. Each class includes mindful movement guidance and somatic education; class cycles include warm-up, sustained non-impact aerobic conditioning, strength training, cool down and stretching. Nia Fitness classes are taught to music, including pop, electronica, jazz, Latin, New Age, Indian and hip hop. They employ 52 basic movements and techniques that draw on a combination of Jazz, Modern and Duncan Dance styles, Tai Chi, TaeKwonDo and Aikido; and the body mind healing arts of Feldenkrais Method, Alexander Technique and Yoga.”
Thursdays, same hours is chair-based strengthening.
Fridays from 1:30 PM to 2:3 0 PM is Tai Chi.
The Caregiver Support Group begins Jan. 29. It is free and runs for12 weeks on Fridays from 1:30 PM to 2:30 PM. A community event is scheduled Jan. 23, 7-9 PM. The topic is Keep Moving Tampa! For background and contact information see my earlier post: https://shufflingeditor.wordpress.com/2015/10/01/tampa-gets-grant-for-parkinson-wellness-program/

Rock Steady Boxing and Me

I am into the second week ( 3x times a week) of this slightly misnamed program. Of a 90 minute training session, no more than 30 minutes is devoted to punching hanging and big bags. The remaining 60 minutes is spent in floor, strengthening exercises, weight training and Balance exercises such as skipping, sidestepping, butt kicks, monster steps and backwards walking.

Two early observations of the program: I had not realized how degraded my hand-eye coordination had become. That sure explains why my golf swing left me. Second observation. I end sessions more energized than tired. Whether coincidence or not, I have not had a “bad” PD day since starting the program. Bad days are when you feel like you have the flu. I am accustomed to having them one day in five.

Huffington Post had a recent piece on the program: http://www.huffingtonpost.com/jonathan-j-doll-phd/rock-steady-boxing-for-people-with-parkinsons-symptoms—-a-national-perspective_b_8646972.html
The Largo program has no plans for a move into Hillsborough. But I have talked to a person who is seeking to put a franchise location in Channelside.

AN INVALUABLE RESOURCE GUIDE FOR THE NEWLY DIAGNOSED

My friend Kirk Hall has updated his information guide for those new to PD. It is pure gold and is a byproduct of the national research project on palliative care in PD. http://www.shakypawsgrampa.com/index.php/new-blog/entry/parkinson-s-education-resources-1-years-since-diagnosis

SPEAKING OF PALLIATIVE CARE

None of us likes to think our journey will end with dementia. In upwards of 50% of PD cases it does. The financial impact of dementia can be devastating. Money magazine has a helpful review of available options at Money.com/dementia.

Palliative Care, Parkinson's Disease

It’s Time for a Tampa PD Helpline

Science writer and Parkinson’s patient Jon Palfreman sets out this concise description of the disease that over one million Americans live with …and die from:

“… people with Parkinson’s progressively lose core pieces of themselves. We forget how to walk. Our arm muscles grow weaker. Our movements slow down. Our hands fumble. Simple fine-motor tasks like buttoning a shirt or balancing spaghetti on a fork become a challenge. Our faces no longer express emotions. Our voices lose volume and clarity. Our minds, in time, may lose their sharpness…and more.”

The “more” varies, widely from patient to patient, writes reviewer Doug Clifton, former editor of the Miami Herald and PD patient. Some lose the sense of smell. Some shuffle instead of stride; freeze in place as they try passing through a doorway. Some drool. Some have all the symptoms, others just a few. Some are dramatically helped by the drug regimen prescribed; others continue to struggle as the regimen gets tweaked.

How aware of their disease are PD suffers? According to a 2014 Harris survey:
57% feel informed about how PD progresses.
46% feel informed about treatments for non-motor symptoms of their disease.
54% feel informed about treatments for motor symptoms.

In other words, stunningly few PD sufferers understand what’s in staring them in the face today and what’s ahead for them.

I am not blaming doctors for this patient ignorance. Doctors are compensated for diagnosing disease and prescribing remedies. They have no financial incentive, much less the office resources, to educate patients about PD and answer everyday questions from patients.

Patients are asking questions but finding few answers, especially close-to home answers.

Where do I locate the physical therapy that doctors often suggest? How do I find a personal trainer who specializes in PD? Who can help me make my home safe from falls? Where do I enroll in recommended Tai Chi classes? Is anyone local offering that boxing therapy I saw on Sixty Minutes? Is there a young-onset support group in our area?

In most locales, there is no one place to find answers to those and dozens more local questions. National PD foundations effectively provide broad stroke answers, not geographic specific ones.

Why not provide a Tampa Bay answer line to recommend local resources PD patients nee to address their specific concerns and questions?

This multimedia clearinghouse, call it the Parkinson Connector, would be a one-stop shop for solutions. It would assemble lists of certified and licensed providers of care and share those lists with patients.

Patients, in turn, would be obliged to “own” their disease and make decisions and take action based on the provider lists. The Tampa Connector would not be a treatment provider. It would be a crucial link between doctors and the needs of their patients.

Physicians could recommend the connector to patients. At diagnosis, doctors would provide patients a succinct and jargon-free brochure that answers initial questions and concerns and directs patients to the connector for more information.

Imagine Rotary International providing seed money for this start up. District clubs would make it a priority project and spread the word in the community. If successful, the model could be duplicated in other Rotary locations.

The ideal connector is an existing, non-profit medical care organization with the infrastructure and patient experience to integrate the PD initiative into existing operations. Supplemental resources, of course, would come from a grant.

The connector proposal addresses real needs with the promise of great service to people who deserve guidance, direction and validated information.

This proposal is bold and complicated in operation, especially the marketing and public information aspects. But it is simple in strategic concept: connect people with daunting challenges in everyday living with existing local resources to meet those pressing needs.
*******************************************************************************************(

NPF response from Leilani Pearl, Vice President, Marketing & Communications, National Parkinson Foundation:
“I saw you new blog post this morning. As I mentioned on the phone, we do have a national Helpline to help people find resources in their area, including Tampa. The # is 1-800-4PD-INFO (473-4636) and the link to search by state is here: http://www.parkinson.org/search.

Palliative Care, Parkinson's Disease

If Cardiologist Tom Graboys Had Instead Been a Neurologist

Thomas Graboys, M.D. was a beloved Boston cardiologist who struggled for many years with dementia connected with Parkinson’s disease. He died with it this year.

He famously wrote a book, “Life in the Balance: A Physician’s Memoir of Life, Love, and Loss with Parkinson’s Disease and Dementia.” It bared his innermost thoughts and emotions about what Parkinson’s and advancing dementia feel and look like.

I reread the book recently. I imagined how he would break the news of a Parkinson’s diagnosis if he were a neurologist and not a cardiologist.

All of us end up in the neurologist’s office with a variety of seemingly unrelated problems. That’s one of the many things that makes PD so frustrating. Like
snowflakes, each case of is different.

When the doctor’s verdict is rendered, Parkinson’s disease, it is the day we will never forget. For some like me, there is a momentary sense of relief that the accumulating symptoms have a cause and a name. For others the reaction is terror, shock and confusion.

We ask what does this mean for us? A brusque answer one of us received was “your symptoms will only get worse.” In my case, the answer was “at your age of 75 something else will kill you first.” Few of us received information beyond the diagnosis that day.

Commonly, we leave the doctors office with a pill prescription and instructions to return in three months. We are on our own. We get no literature explaining what Parkinson’s disease is, what we can do about it and what our future holds.

What if Tom Grayboys had had been the one delivering the news? He would have taken the time to give us a short explanation about the disease, encouragement about the therapies available to treat it, some information about the importance of exercise and diet.

He also would have given us a set of instructions about exactly where on the Internet we could find reliable information, where exactly and what specific exercise we should seek, and information about support groups in our area. He would tell us that patients who do well with the disease don’t let it own them—they own and control it. You don’t have to do this alone, he would say.

Graboys would not have done this from behind his desk but sitting close to us in a reassuring matter. He would have written down on a piece of his stationary his home phone number and told us to call anytime we needed help. He would not have said to return in three months but in one month. Then we would discuss what we had read and the questions we had concerning it.

Graboys would also explain at that next meeting how there was an organization we could join that would have regular educational seminars about PD, special programs for caregivers and recommendations on finding the physical and other therapists who could attend to her needs. He said he would work closely with the organization to see that care provision was modified as needed for each of us.

The Graboys approach would reduce our anxieties and provide an organizational anchor point.

Graboys would write out the medications he was recommending and what they were for. He would ask the patient what he or she thought was a reasonable exercise regimen within their abilities. We would discuss dietary and other lifestyle changes that would help us enhance our life. He would call it the plan.

It was the “contract” between Graboys and the patient that, if adhered to, would help ensure a positive outcome. And because the plan was personal to each patient, it was more likely to be honored. Just leaving the office with that plan in hand inspired hope because implicit in that plan was the message that there were things the patient could do to take control of their illness. Indeed, while there may have been three hundred words on that page, it really was just one: “hope.” The written plan inspired hope that by following the instructions we could enhance our chances of living out a fairly normal life.

Must Read, Palliative Care, Parkinson's Disease

A Resource Guide For The Newly Diagnosed Parkinson Patient

This authoritative guide was created by my colleague Kirk Hall and  first published on his blog shakypawsgrandpa.com. It is a wise and comprehensive list of existing resources. His advice deserves widespread attention.

This resource guide has been assembled by an experienced patient/caregiver group and members of the Parkinson’s disease (PD) medical/research community who share a common goal, which is to improve quality of life for people with Parkinson’s (PWPs), care partners, and their families.  A common concern of the newly diagnosed is how to find the information that they want and need.  In this brochure are links to resources that will provide helpful basic information regarding Parkinson’s, including young onset.  In the future a comprehensive guide will be available that will allow you to access a wide range of additional information.  If you are unable for any reason to obtain information you seek, there are services that will enable you to speak directly with someone who can help.

But first, our PWP/care partner members want to share a few things they have learned that are important for you to know:

  1. Give yourself some time to “process” your diagnosis.  This is a major unanticipated change in your life.  Do not give in to feelings of fear or anxiety!  Yes, your life will be different, but you will be surrounded by many people in support groups, PD organizations, and the medical community who are dedicated to making your life better!  Not to mention the support of family and friends (the same people you would support if they were going through something like this).  As soon as you are ready:
  2. Your #1 priority is to be sure you are working with a doctor that has appropriate experience, training, and education for your condition.  Do not assume that your doctor, no matter how much you may like him or her, meets this description!  Not all neurologists, for example, have movement disorder expertise that will enable them to recognize the subtle symptoms of PD and recommend appropriate medications and/or therapies.  If your doctor is not a good fit for you, or even if you are not sure and want a second opinion, we will provide information in our resource guide to help you locate a movement disorder neurologist in your area.
  3. Your #2 priority is to understand that exercise has been proven to be the single most important thing you can do for yourself to improve your condition and how you feel as well as potentially slowing the progression of the disease.  It will help you stay positively engaged and fight off the apathy that some of us experience.
  4. Your #3 priority is to take ownership of your situation by learning about PD and how you can live well with it.  This will enable you and your care partner to take an active role in the management of your condition, including providing information about your symptoms, any changes you have experienced, things that concern you, medications you are taking, other conditions you may have and more.  If you have concerns, ask questions!  If your doctor consistently does not take the time to answer your questions, find a new one!  Your obligation is to yourself and your family!
  5. Your #4 priority is to locate and join a PD support group.  “Test drive” one or two, if necessary, to find one that is comfortable for you and your care partner.  Get involved!
  6. If you are in a remote area, your options may be limited.  We know people who have teamed with a local neurologist working in conjunction with a movement disorder specialist that you can visit occasionally.  Another option is telemedicine, which allows you to receive care using communication technology.  Explore these options with your doctor to find an arrangement that works for you.
  7. Stay engaged!  The steps above will get you moving in a positive direction.  It is OK to have a bad day here and there, but own it and don’t let it turn into a bad week.  You do not have to go through this alone!

 

Help locating a movement disorder neurologist and why this is important

Exercise information

Newly diagnosed information

Young onset information

Help locating a support group (PWP & care partner)

Help locating a caregiver support group

Talk directly to a person who can help