Sunday, September 18, 2016

Self-Care Plans – World Parkinson's Congress Presentation

On Tuesday, September 20, 2016, I have the privilege of speaking at the World Parkinson's Congress 2016, to be held in Portland, Oregon between the dates of September 20 – 23.

My first of two talks will be on Self-Care (although I must admit that I feel quite inadequate to cover this topic given my failures in this regard). One of the tools that I will be discussing is the use of a Self-Care Plan (SCP).

An SCP can serve as a constant and invaluable resource that will allow a person with Parkinson’s, a caregiver, a healthcare worker, a medical professional, and even family and friends, access to comprehensive information that will result in a higher quality of life than you would otherwise be capable of experiencing.  I suggest you collect all the material necessary for your SCP in a three ring binder with multiple tabs to reflect a Table of Contents. 

Table of Contents of Self-Care Plan Binder

1.      1.  Self-Care Plan – under the first heading/tab would be a description in detail of what might otherwise be called a wellness plan. This would include a general description of what is sought to be achieved by a SCP, goals and aspirations, as well as priorities, rewards and limitations. There are excellent smart phone apps available for free or very little cost (under $10) in which a great deal of relevant information related to a wellness plan can be kept for easy access.
2.   2.  Symptoms and Side Effects – under this heading would be a comprehensive description of diagnosis and onset list of both motor and non-motor symptoms experienced and side effects of medication (which may be difficult to distinguish). These descriptions should be as comprehensive as possible, with timing, duration and effective means of dealing with these matters. This could be a separate binder or journal. Alternatively, subheadings or sub-tabs could be used. Included under this heading would be:
a.      a description of all known symptoms experienced, when they started and stopped, their severity and potentially associated cause or trigger, any factors alleviating or amplifying symptoms;
b.      a description of all reactions/responses to medications, when experienced, for how long, severity and relieving factors.

3.      3.  Health Care Team (HCT)– under this tab should be a complete list of all healthcare professionals including your family doctor, neurologist, key nursing staff potentially surgeon in relation to DBS), their contact information, addresses, and other relevant information.

4.      4.  Therapy – listed under this tab would be the same kind of information as noted under the first heading for your HCT, but in this case it would be for therapists, including physiotherapy, occupational therapy, speech therapy. It may be helpful to list any therapeutic regimes, responses to different therapies or other relevant information here.

5.     5.   Nutrition/Diet – all information related to dietary and nutritional concerns.

6.      6.  Weight – if fluctuations are of concern.

7.      7.  Exercise – all exercise plans, trainer/coach particulars and contact information, results and accomplishments.

8.      8.  Pharmaceutical Medications – a complete list of all medications prescribed, and changes, together with the relevant dates, reactions to end a copy of the comprehensive information provided by pharmacies at the time of the prescription is being filled.

9.      9.  Sleep, rest and fatigue – record sleep sufficiency, disturbances, irregularity (consider using phone apps to record sleep patterns). Also describe fatigue levels, timing, severity. List nap(s).

10.   10.  Cognitive functioning, depression, anxiety, self-isolation and apathy – if not listed elsewhere, provide comprehensive information on therapist and personal coach. Detailed journaling would also be helpful to assist in assessing both onset, responses and treatments.

11.   11.  Caregivers – list particulars with respect to any caregivers, including arrangements made with them.

12.   12.  Technology – list of computer applications, technology involved, passwords, mechanical assists.

13.   13.  Involvement in the advocacy and clinical trials/studies – relevant details.

14.   14.  Psychosocial – describe feelings of guilt, self-pity, anger, lack of confidence.

15.   15.  Social Options/Support Groups/Peer Support/Friends and Family network – particulars with respect to groups and/or individuals. Recording of dates, events and occasions.