A PERSONAL OPINION & ACTION PLAN
By Ron Smith
I was diagnosed with Parkinson's disease (PD) in late 2006. Since then I have put much thought into what this diagnosis means to me and how to cope MOST effectively while living my life as fully as possible and doing things I enjoy doing, especially enjoying life with my wife, Dorothy. It is my sincere hope that what I think has worked for me may also prove helpful to others in dealing and living with the challenge of PD.
The underlying basis of my approach is that I need to have an assertive, action and questioning, pragmatic approach rather than a passive, laid back response to dealing with PD in order to make the best of a complicated, challenging life situation. My somewhat pragmatic approach to this is reflective of my engineering education and work experience. Have an orderly plan, ask questions, seek out the facts, then verify and validate the facts (i.e., get a second professional opinion on your diagnosis-I did and found it helpful, and, I suppose, reassuring in a way). It is important to realize that PD can be overwhelming at first, with a lot of possible symptoms, unique for everyone with some downright depressing complexity. It is different for each of us and a rational plan helps coping, at least for me.
While denial is generally not a very positive response, I believe a certain, healthy denial is helpful insofar as denying the disease control of your life and denying it control of your activities, as much as possible. Give the concept some thought!
Key Elements for an Action Oriented Approach
The key elements for dealing with the PD diagnosis for me seem to be centered around the following fundamental aspects, based on my 3-1/2 years of experience, observation, and involvement in the local PD community:
Obtaining and using the many excellent and available resources leading to gaining a solid understanding of the disease and its many implications.
Selecting and using a knowledgeable and experienced movement disorder neurologist.
Learning about and understanding how the various meds used work, their side effects, and all vital contraindications.
Implementing lifestyle changes by including a habitual, aggrressive, consistent, regular, aggresssive aerobic and resistence exercise program. Do this if nothing else!
Engagement and active participation with your family in your local MPF support group if available - priceless and worth many times over the cost (0, except for donations!). Dorothy is very active with me. I find this essential.
Family involvement including participation with your loved ones and family in the MPF sponsored two hour orientation program and 6 week Living with PD workshop and repeat if it's been awhile. We found these both very helpful.
Record keeping, communication, and observation. Develop and maintain an up to date clinical history, med list, emergency procedures (for me with another chronic condition this is critical), and observations for your physician on what's going on.
Engagement in volunteer work in the PD community. This is giving back for gifts received in knowledge and interaction with others in the PD community.
Maintaining good nutrition and emotional health. Vital but a bit removed from my knowledge base and experience to permit much comment.
FURTHER THOUGHTS & SPECIFIC SUGGESTIONS
Fortunately there is a myriad of excellent resources readily available including books, brochures, and paper booklets, internet sources, handouts from the MPF, and library materials maintained by the support groups. MPF has a card with PD contraindicated meds that you should get. MPF also has an information and referral program providing names of nearby physicians experienced in treating PD patients. The presentation by MPF in the orientation program is great and the six week MPF workshop also provides useful documentation. The MPF has many separate resources including its newsletter, The Messenger, in addition to its website (www.parkinsonsmi.org), and over 55 support groups in Michigan. Get on their mailing list.
Your neurologist and pharmacist can also provide information and existing patients are likewise good sources for doctor referrals.
Useful PD books are The Parkinson's Disease Teatment Book (overall coverage) by Ahlskog and Making The Connnection Betweeen Brain And Behavior (med effects) by Friedman. Both are excellent and I got my used copies at nominal cost from amazon.com. Other must haves are Parkinson's Disease Resources List (a total resource listing) and Web Resources for People with Parkinson's (web resources available), both available at no cost from MPF or the Parkinson's Disease Foundation. Finally, the National Parkinson Foundation publishes a great set of booklets including coverage on medication, nutrition, fitness, caring/coping, understanding PD, practical pointers, mind/mood/memory, and speech/swallowing.
Finally, I subscribe to the Northwest Parkinson's Foundation weekly newsletter and monthly letter (email@example.com). It is provided at no cost and they cover much of the current research and trial info. It keeps me up to date.
I was more comfortable selecting a neurologist who is a movement disorder specialist who primarily treats PD patients, is knowledgeable and experienced (years) in the field and is suggested by other patients and the MPF. If in doubt, seek an interview and go prepared with a list of questions. Get a second opinion of your diagnosis (I did and was happier for it).
Medications (together with exercise) are the cornerstone of treating PD, and every person requires a different combination of medications. What a person takes this year may be changed next year in order to gain more control over the PD symptoms and side effects that all medications have. Keeping on a schedule of taking medications is essential and you need to learn specifics about the medication: what each drug does, when to take it (hours of the day, with or without food), what is supposed to be the positive effect, what are the side effects, and if there are other medications that you should not take with them. It may take a little time to learn about the different drugs and forms - like learning a new language. You can do it with help from others. Get Friedman's book to help in dealing with the side effects.
Record Keeping and Communication
Maintain an up to date clinical history and a list of your meds and consider an ID alert system such as Medic Alert (which I use). I find it helpful. The med list should contain aspects such as the date, file name, patient name, morning and afternoon protocols, script and over the counter (OTC) medications, med names, dosages, purpose-why being taken, prescribing physician, special precautions and contraindications, any PRN meds and when taken, dates when changes are made, and any other special conditions. Maintain a complete clinical history. Space does not permit a conceptual outline here. Keep it all on flash drive.
Engagement In The PD Community
Say thanks to the MPF, interact with the organization and other patients, and participate. Help to keep the invaluable services provided by MPF to continue.
Two last thoughts: I believe that every one of us needs to take an active role in managing our Parkinson's disease and the only useful generalization about PD is that there are no generalizations! Each of us is unique.
Keep On Moving!
Ron was an avid runner and long distance bike rider for some 20 years and a 3:28 marathoner. He was diagnosed with myasthenia gravis in 1997 (a rare neurological disease with some similar symptoms to PD including fatigue) and subsequently spent six years trekking in the Alps on summer vacations. He is a double cancer survivor (thyroid & prostate). He completed the megatransect (ultrahike.com) in Lock Haven Pa. in 2005 (not last) and 2007 (last this time), a 25 mile trail walk/run in the Pennsylvania mountains with over 5,000 feet of ascent and descent and big, bad boulder fields to cross. He finished standing in both cases. He welcomes your thoughts and comments on these suggestions (c/o MPF at firstname.lastname@example.org).