Kirk's Blog

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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.

NEW PD PALLIATIVE CARE RESEARCH STUDY RECRUITING PARTICIPANTS

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A new clinical research study titled “Does outpatient palliative care improve patient-centered outcomes in Parkinson's disease?” has begun at University of Colorado Hospital Anschutz Campus and is actively seeking interested individuals over the age of 40 that have been diagnosed with probable Parkinson’s disease and their care partners.  Dr. Benzi Kluger is the principal investigator for the study which is being funded by the Patient-Centered Outcomes Research Institute (PCORI) and will take place over a period of three years.  There are two additional sites at the University of Alberta and the University of California San Francisco. Information regarding this study is available on the Fox Trial Finder site at https://foxtrialfinder.michaeljfox.org/trial/4202/.

 

Many people are confused by the term “palliative care”.  It is a treatment approach focused on improving quality of life by relieving suffering in the areas of physical symptoms such as pain, psychiatric symptoms such as depression, psychosocial issues, and spiritual needs for PWPs, care partners, and families at all stages of PD.  Hospice and palliative care are not the same thing.  Hospice can be an extremely valuable end-stage service and is an under-utilized subset within the palliative care spectrum. This study plans to learn more about the effect of palliative care on patients with Parkinson’s disease and their care partners.

 

Participant requirements and information:

    • Complete a battery of questionnaires every 3 months for 1 year.Thesequestionnaires will ask the PWP and/or care partner about their quality of life, disease symptoms, healthcare, and overall well-being. This battery will take up to 2 hours.
    • In addition to the standard care provided by a primary care physician andneurologist, half of participants will visit a palliative care team every 3 months for 1 year.
    • The remaining half (chosen randomly) is the control group and will receive standard care provided by a primary care physician (PCP) and neurologist only.  If you do not have a PCP or neurologist, assistance will be provided to find either or both.
    • If there is an urgent need for palliative care services, you will not be accepted for the study, but you will have the option to make an appointment with palliative care team at University of Colorado Hospital.
    • By participating in the study, you will help determine whether there is a quantifiable benefit for individuals who receive support from a PD Palliative Care support team, which includes a palliative care physician, nurse, social worker, and spiritual/emotional counselor.  If it is shown that there is a benefit, this will help pave the way for more of these kinds of services.

Consistent with the “patient-centered” nature of the study, Dr. Kluger is working with a patient advisory committee organized by Kirk Hall, all but one of whom are connected with the Highlands Ranch support group.  They have been involved in the study design and questionnaire reviews and will provide input and feedback regarding the study implementation and analysis of the outcomes.  They recently participated in a PD Palliative Care Conference in Denver funded by the Parkinson Disease Foundation and attended by palliative care experts from the U.S., Canada, England, Ireland, and Australia.

 

If you would like to register for this study or receive additional information, please call Etta Abaca at 303.724.4718.

Parkinson's Life Enhancement Proposal
UPGRADING PD CARE