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Kirk started writing articles for his blog around the time his first book was published (September 2011). Not having any other bright ideas at the time, he adopted the book title as his “brand” for the blog. Over time, Shaky Paws Grampa (SPG) has become his “identity” in the PD world. The good news is that he hasn’t had to fight anybody for it and there was no competition for the web address (understandably).

He didn’t have any clear goals in mind for the blog when he started other than to make his target audience the “PD world”, opting to write about what ever inspired him at the moment. Over time, various themes emerged:

Book or writing-related
PD-related information
Clinical research study advocacy/participation
Cognition issues
Living with PD-personal
PD meeting/conference announcements
SPG speaking engagements, media interviews, and webinars
Calls to action
Personal

Three years later, he has posted 120 articles that have been viewed by readers from over 60 countries around the world.
Kirk Hall

When Words Aren’t Enough

What do you say when words aren’t enough to express what you are feeling? I am in that place right now because I have lost a dear friend, Alison Paolini, to Parkinson’s. She was a feisty little woman with a beautiful heart and wonderful artistic talent. I was blessed to have Alison illustrate my two children’s books.

Linda and I met Alison a couple summers ago at her home in Paradise, CA. She had very recently lost her beloved husband, Rudy, to dementia and was preparing to move to the LA area to live with one of her daughters. While we were there, Alison showed us the “loft” where she had over a hundred paintings and other artistic creations stored, the 40+ year-old fruits of her labor of love. We were moved when she shared with us that she hoped that her collection could be sold to raise money for Parkinson’s research.

Since her move she has steadily declined. A number of people have made honest efforts to try to help Alison realize her dream. I am still hopeful that this will happen. If so, it will be a fitting and final tribute to Alison.

Here are some samples of the work she did for me:

covercampingCarson book

 

 

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Kirk Hall

Palliative Care for Parkinson's Disease: A Patient and Care Partner Prescription

 

 

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This is a paper based on the PD palliative care patient perspective presentation given at the first World PD Palliative Care Conference October 2015 in Denver.  It has been submitted for publication to neurology and PD-related journals.  While the paper has generated a great deal of positive feedback, it may be difficult to get approved for publication by scientific journals. This is because it is based on the opinions and experience of PD advocates who are highly involved in the PD world, not on scientific data. This creates a quandary, as we feel that the ideas shared in the paper have value to the PD community. Which raises a larger question, which is how can worthwhile ideas generated as a result of the patient-centered movement be communicated to the medical/research audience and end up generating positive change? Who gets to decide what has value and what does not?

I will have the honor of presenting this paper at the upcoming World Parkinson Congress in Portland.  This will provide a larger audience an opportunity to consider whether it has value.  If nothing else, it is an honest attempt to convey patient insights that might lead to positive changes.  It also includes much-needed educational material based on patient experience and feedback designed to benefit newly diagnosed individuals.


Kirk Hall1, Malenna Sumrall2, Gil Thelen3, Benzi M. Kluger, MD, MS4* on behalf of the 2015 Parkinson’s Disease Foundation sponsored “Palliative Care and Parkinson’s Disease” Patient Advisory Council

  1. Parkinson’s disease patient and advocate, Highlands Ranch, CO
  2. Carepartner for Parkinson’s disease patient, Aurora, CO
  3. Parkinson’s disease patient and advocate, Tampa, FL
  4. Director, Movement Disorders Center, University of Colorado Denver, Aurora, CO

*Address correspondence and reprint requests to:

Dr. Benzi Kluger, Department of Neurology, University of Colorado Denver, Mail Stop B-185, 12631 East 17th Avenue Aurora, Colorado 80045

Phone: (303) 724-8984 Fax: (303) 724-2212

E-mail: benzi.kluger@ucdenver.edu


ABSTRACT

In 2015 the Parkinson’s Disease Foundation sponsored the first international meeting on Palliative Care and Parkinson’s Disease (PD) and the Patient Centered Outcomes Research Institute (PCORI) funded the first comparative effectiveness trial of outpatient palliative care for PD. As part of these activities a council of PD patients and carepartners came together to provide their perspectives on palliative care. In this process, the council developed a prescription for the clinical and research community to better meet the needs and challenges facing people living with PD and their families through a palliative care approach. The council envisions palliative care as an approach to the care of PD patients and their families that seeks to reduce suffering through education, spiritual, psychological, social and medical support. Palliative care is envisioned as a 3-legged stool with support coming from: 1) Primary care physician and neurologist; 2) Community organizations; and 3) Palliative care specialists. This approach should begin at the time of diagnosis as this is one of the most challenging times for both patients and carepartners and include better emotional support, educational resources and closer follow-up than is currently standard. For patients in the early to middle stages of PD, additional attention should be directed towards planning for the future including both medical and financial aspects. For patients with late stage PD, carepartner support is paramount. Ideally, neurologists will stay involved in care of both the patient and carepartner rather than abandon them when patients develop dementia or other sequelae of advanced disease.


Thomas Graboys, M.D. was a beloved Boston cardiologist who struggled for years with Parkinson’s disease (PD) related dementia. He died with it in 2015. His book, Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia, bared his innermost thoughts about what having Parkinson’s and dementia feels and looks like.1 As a physician, he believed in sensitive and effective patient care. His life story and clinical philosophy strongly influenced our thinking on PD palliative care.

When the doctor’s verdict is rendered “Parkinson's disease“ is a day we patients will never forget. For some, there is a momentary sense of relief that the accumulating symptoms have a cause and name. For others, the reaction is terror, shock and confusion. We ask what does this diagnosis mean for me? Few receive information beyond the diagnosis on what PD is, what we can do about it and what our future holds. Commonly, we leave the doctor’s office on our own with a levodopa prescription and instructions to return in three months.

How would Graboys have broken the news of a Parkinson’s diagnosis if he had been a neurologist and not a cardiologist?

He would take the time to explain what PD is, encouragement about available therapies, and information about the importance of exercise and diet. Graboys would tell us that patients who do well PD don’t let it own them. You don’t have to do this alone, he would say. Graboys would also explain at a meeting one month later how there was an organization we could join with educational seminars, programs for carepartners and recommendations for physical and other therapists. He would work closely with the organization to see that care provision was modified as needed for each of us. Graboys would write out any medications he recommended and explain what they were for. He would discuss exercise, diet and other lifestyle changes that would help enhance our life. He would call it the “plan”.

It was this contract between Graboys and the patient that, if adhered to, would reduce stress and increase the chances of a positive outcome. And because the plan was personal, 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 and enhance our chances of living a fairly normal life.

The Graboys’ allegory contains many of the early stage recommendations of our prescription for PD Palliative Care. It is the approach he took with his cardiology patients grown to meet the needs of the illness that took his life.

The Patient Prescription for PD Palliative Care was created by PD advocates Kirk Hall and Gil Thelen based on their personal experiences and personal interaction with other patients and carepartners.2 It outlines recommendations for changes or incremental actions to improve patient quality of life. It is not intended to be an indictment of the current system or the dedicated practitioners who operate within it.

We envision a new, improved approach to Palliative Care based on a “three-legged stool” including the patient’s primary care physician and neurologist (leg 1), a PD palliative care team (leg 2), and a PD support entity (leg 3). The “three legs” are meant to provide support for patients, carepartners and families throughout the PD journey.

Early Stage: Diagnosis to five years (honeymoon period)

We recommend rebranding Palliative care as PD Life Enhancement, or something similar, to address confusion and misperceptions about palliative care. Palliative care should provide a comprehensive, coordinated, and consistent approach for the medical and PD support communities designed to maximize quality of life for patients, carepartners and families starting at diagnosis and to reduce stress for the duration of the disease and bereavement period.

The key points for diagnosis were included in the Graboys allegory. Another important element is sharing informational resources (see Appendix 1 for an example). We recommend scheduling follow-up a month after diagnosis since many patients are “shell-shocked” and unable to absorb much beyond the words Parkinson’s disease. This is an opportunity for the doctor to assess how the patient and carepartner are doing, ask if they have reviewed information resources, and answer questions. The potential value of support groups should be discussed. Finally, it is important for the doctor to outline what information to bring for future appointments to make appropriate care decisions.

We recommend an appointment a year after diagnosis to assess the patient and carepartner’s “readiness” to be provided with additional informational resources (see Appendix 2). Most people should be ready at that point and some may have already begun this process on their own. If not, we recommend discussing why they are not ready. Some patients take the “what I don’t know won’t hurt me” approach. It is important to share that in general patients and carepartners who do best in managing PD take “ownership” of it so that they can properly advocate for themselves and make good choices. We recommend participation in self-efficacy or chronic disease management education programs. This is also a good time to revisit the potential benefits of joining a support group. The doctor should have a working relationship with regional and local support groups.

We propose that at some point in the first couple years following diagnosis, the PWP and care partner should be asked what they know about palliative care. If they have attended a self-efficacy program, they may know a great deal. Make sure that they understand how it works and the benefits of such a program, emphasizing the need to get involved prior to late stage symptoms in order to avoid unnecessary stress and confusion.

Middle stage: Five years to advent of symptoms that substantially affect daily living

The middle stage is a crucial time for patients, carepartners, and families. It is a time when learning can take place relative to late stage. Plans and decisions can be made to make the later stage easier. Wrestling with these issues, including faith, can create acceptance and peace of mind, making the last stage of the journey far less stressful.

Tasks should include:

  • A personal plan for taking ownership of possible outcomes, including the possibility of financial challenges.
  • Develop end of life wish list and legal documents including advance directives.
  • Discuss with doctor what his/her role will be in end stage.
  • Discuss carepartner plan for assistance and self-care
  • Begin assessing need for in-home safety and for equipment
  • Consider counseling to address faith/spiritual issues or concerns

Many patients, carepartners and families miss this extremely important opportunity for a variety of reasons. They may not have as much warning as they think before they are in the thick of late stage and end up scurrying around to find resources, fighting amongst themselves at a time when they need to be focused on caring for each other. They may not want to face the inevitable decline of their loved one and the difficult decisions this entails, so they take the “ostrich” approach by sticking their heads in the sand. PD palliative care clinics may have value in helping families in this stage.

Late Stage: Advent of significant disability/hospice to death/bereavement

In our model, the late stage becomes a matter of implementing plans and preferences identified in the middle stage. Legal paperwork will be available to minimize confusion, misunderstandings, or other “bumps in the road”. Of course, it is not likely that all developments can be foreseen and planned for, but these should be the exception. If the plan includes contingencies based on the nature of specific health issues as they unfold, there can be “course adjustments” as opposed to confusion and stress related to confrontation of unanticipated issues.

We recommended that the patient’s primary neurologist stay engaged with the patient and carepartner in late stage. By that time, a significant relationship based on experience and trust has often been created with both the patient and carepartner. If not, following the Graboys allegory, it should have been. Remaining involved after they can no longer “fix” their patient is contrary to the training most doctors have received, and that needs to change.

It is extremely important to be mindful of carepartner stress/burnout at this stage and this is an area where a palliative care team could and should add great value. The team needs to be aware that the carepartner can become so overwhelmed that they don’t take the time or have the energy to reach out for help. A regular “check-in” should be established that, if missed, would trigger contact by the team. Finally, while bereavement is easy to overlook, but if we are to commit ourselves to fulfilling the PD Life Enhancement “mission” as defined, we must be mindful of the needs of the carepartner and families following the death of the patient.

PD Support Organization Proposal

In order for the three-legged stool concept to work consistently and to facilitate development and implementation of programs as well as sharing of best practices, we recommended development of a unified regional program coordinated by a single national entity. Based on our information and experience, we recommended the approach taken by Association of Independent Regional Parkinson Organizations as a model that allows for autonomy and at the same time keeps the benefits of being part of a group, such as timely sharing of information and learning from fellow members’ successes and failures. As a model for a single region, the Muhammad Ali Parkinson’s Center in Phoenix is one potential candidate.

Medical Community Proposal

We proposed a fundamental shift in the mindset and training of doctors starting in medical school to facilitate the changes discussed, including getting to know patients and carepartners beyond their medical records and the importance of remaining engaged in late stage to help ensure a “successful transition to death.” We would describe this as one in which the carepartner, family and medical team can feel at peace because they did everything possible to honor the patient’s wishes about how he/she wanted to die.

This raises an important topic in the minds of the overwhelming majority of PD patients that needs to be resolved. For most of us, it makes no sense to prolong suffering for patients and, in the process, impose huge medical bills on our families by not giving us the choice to die, when no hope of a cure remains. We deserve to have all reasonable choices (like what we would do for the humane treatment of our pets) available to us without risking a stain on our legacies.

Another recommended area of focus for medical schools is the ethical aspects of working with patients who would be better served elsewhere. This is a sensitive subject because it shines a spotlight on doctors who choose to continue treating a patient despite knowing better options exist. We have seen the impact of this when inappropriate care is provided by a doctor without PD-specific knowledge or skills.

Finally, we add our voice to the many who have called for development of telemedicine and other technologies to increase access to high quality care in remote/rural areas and for patients with mobility issues.

Unmet Needs/Gaps

“Palliative Care” terminology confusion

  • Team approach to palliative care
  • Reduction of diagnosis angst
  • Planning for end stage beginning in middle stage
  • Early and better utilization of hospice
  • Role of neurologist in late stage
  • Patient control of the manner in which they die
  • Carepartner/Bereavement needs
  • Remote area needs

High Priority Areas for Future Research

  1. Identify barriers and opportunities in the medical community to implement palliative care.
  2. Determine the impact of the implementation of the new approach to PD palliative care on PWP, care partner, and family’s quality of life at each stage of the disease.
  3. Determine the effectiveness of new and existing remote area care alternatives to deliver palliative care.
  4. Learn from other palliative care approaches (e.g. cancer) that might improve PD palliative care.

ACKNOWLEDGEMENTS

The authors would like to thank the other members of the patient advisory council for their support and input. This work was supported by the Parkinson’s Disease Foundation Conference Grant (“Palliative Care in Parkinson’s Disease”).

The authors would also like to dedicate this manuscript to the memory of Dr. Thomas Graboys who was generous with his time in developing these ideas when he was alive and who continues to inspire us in our work.

REFERENCES

1. Graboys, Thomas. Life in the Balance: Union Square, 2008

2. Hall, Kirk, Window of Opportunity: Living with the Reality of Parkinson’s and the Threat of Dementia, Chapter 13: Palliative Care and Neurology: Striving for Justice, North Slope Publishing, 2014

APPENDIX 1: Newly Diagnosed Parkinson’s Education & Resources

This resource guide has been assembled by an experienced patient/carepartner 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. It is natural to have some feelings of fear and anxiety, but remember you can take ownership of this process. 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 an effective way for you 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. Work with your doctor to determine what kinds of exercise would be best for you.
  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 (include all symptoms, whether or not you think they are related), 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. If you have trouble locating a support group, contact your regional support organization for suggestions. Get involved!
  6. f 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. With PD there are good days and bad days. Just know during a bad day that the good days will come back. Own each bad day and don’t let it turn into a bad week. You do not have to go through this alone!
  8. There is a need for newly diagnosed patient participation in clinical research! To learn more visit https://foxtrialfinder.michaeljfox.org/register/ and complete the profile.

RESOURCES

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 carepartner support group

Talk directly to a person who can help

* NPF: http://www.parkinson.org/find-help/helpline

* PDF: http://www.pdf.org/en/ask_expert

* MJFF: https://www.partnersinparkinsons.org/parkinsons-advocate-program?cid=aff_00032

APPENDIX 2: Parkinson’s Education & Resources: 1+ years since diagnosis

This resource guide has been assembled by an experienced patient/carepartner 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. It was designed for PWPs and care partners who are not considered “newly diagnosed” (typically one year since diagnosis). Hopefully, you received the “newly diagnosed” resource guide at diagnosis and successfully navigated your first year. However, we encourage you to review the resources and guidelines in that brochure periodically as they will help ensure that you have taken appropriate first steps in your PD journey.

We want to make it easier for you to find the information and resources that will make it possible for you to be informed and advocate for yourselves effectively. The good news is that, thanks to the dedication of Parkinson resource organizations, just about any information you may need is available on their websites. The problem is that, for many of us, the specific information we seek is not always easy to find within those websites. Others may not be armed with enough information to know what they should be looking for.

This guide will provide links to topics that are important for all “seasoned” PWPs and care partners to understand. That said, we also want to equip you to find information you seek on almost any topic related to PD. Using your favorite internet search engine (like Google at www.google.com), enter Parkinson’s and _________ (any topic such as fatigue, driving, carepartner issues, depression, anxiety, sleep issues, etc.) in the search box and click “Enter” on your computer keyboard. A list of information resources will appear. Some of the information may not be reliable, so pay attention to the source. Much of the reliable information will be from PD organization or medical websites such as Parkinson Disease Foundation (PDF), National Parkinson Foundation (NPF), Michael J. Fox Foundation (MJFF), the Mayo Clinic, National Institutes of Health (NIH), and more. Since developments and new information are ongoing, note the date of articles to see which are most current. Another tip to get the most current information is to type in the current year (i.e. 2015) after your subject title in the search box. But first, we want to share recommendations for living well with PD:

  • Continue to make exercise a priority.
  • Learn about palliative care. Check out the palliative care links in the resource list below. Attend programs provided in your area that explain palliative care and why it is important.
  • Participate in clinical research trials. When you do this, you accomplish two things. First, you help with the advancement of knowledge that will lead to a cure. Second, you learn things that may help you. Information on specific studies, including availability, location, and timing of research trials can be found at https://foxtrialfinder.michaeljfox.org/.
  • Learn everything you can about PD. This applies to both PWPs and care partners. By doing this, you will have a better idea of what to expect in terms of symptoms and progression. Also, it will enable both of you to advocate for yourselves, ask informed questions, and become active/proactive in the management of your health.
  • Prepare for your doctor appointments. Remember that doctors are very busy individuals who want to provide you with the best care possible. Help make the limited time you have together in appointments productive by preparing a list that includes your current prescriptions, supplements, and symptoms, observations/information regarding your condition, and a list of questions regarding your condition, symptoms, treatment, medications, alternative therapies, or new developments you have heard about that may apply to you.
  • If you are not comfortable with your doctor for any reason, talk to him or her about it. If you are unable to resolve problems that are important to you, find another doctor! Your number-one obligation is to yourself and your care partner.
  • Set meaningful goals and work to accomplish them. If this has always been your approach, continue it. If it has not, resolve to start. Hold yourself accountable and ask your care partner to do the same.
  • Stay in touch with your passions. Some of the non-motor problems associated with PD can include depression, anxiety, and apathy. You may be able to reduce these kinds of issues by engaging in activities that have been important to you in the past.
  • Communicate with each other. It is crucial to keep the lines of communication between you and your care partner open. Tell each other what you are thinking and feeling. Share the things you are worried about and problem-solve together.
  • Attempt to “live in the moment” as much as possible. Learn from the past and move on. Plan for the future, but do not dwell on the uncertainty that it surely contains.
  • Balance. Your “PD life” takes place in the context of your overall life. It will be beneficial for both of you to keep the two integrated and balanced as much as possible.
  • Perspective. Continue to find the joy in your lives. Celebrate the small victories. Do NOT let PD own you!
  • Take care of yourself (Carepartners). Ask for help. Solicit assistance as needed from family members and/or friends. Make time for yourself. Stay engaged with your passions. Attend to your personal wellness.
  • Patience (Carepartners) PD mood swings and/or cognitive problems can be very hard on relationships. No matter how good your communication, it is likely that your partner will sometimes act or react in ways that are not tactful or appropriate. Try very hard not to take these things personally. At a later time, communicate about what happened if you can.

RESOURCES

Apathy/importance of staying engaged

Carepartner Wellness

Deep Brain Stimulation

Depression/Anxiety

Driving

Dyskinesia

End of Life Issues/Planning

Fatigue/Chronic Tiredness

Gastrointestinal Issues

Living Well with PD

Medications/Treatments

Melanoma

Motor Symptoms

Non-motor Symptoms

Pain

Palliative Care/Hospice

Parkinson’s Dementia

Parkinson’s Psychosis/Hallucinations

REM Behavior Disorder

Restless Leg Syndrome

Sleep Issues

Talk Directly to a Person who can Help

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