Receiving the diagnosis of Parkinson’s Disease was the first major hurdle. Now, you are faced with another obstacle course as you plan for a life with Parkinson’s. Here are four tips for managing the road ahead.
So, It’s Parkinson’s…Now What? Four Tips for Managing the Road Ahead
by Lisa Laney, MSW, CMC – Aging Life Care Association™ Member
To put a name to all the symptoms that have been accumulating for years is the first step along a new path which leads to an unfamiliar terrain full of blind curves, steep climbs, and unexpected declines, interspersed with fairly level courses.
Most people who are diagnosed with Parkinson’s have experienced an array of odd symptoms — loss of smell, walking stiffly without normal arm swing motion, a slight twitch in the hand or chin — for as long as ten years before finally receiving a name for their troubles.
Obtaining a diagnosis is the first mystery solved. How to plan a life with Parkinson’s is the largest undertaking for those with Parkinson’s to tackle. As a ten-year facilitator for the Parkinson’s support group in my community, combined with experience as an Aging Life Care Professional™ (also known as a geriatric care manager), I have seen a pattern of actions and tools that provide the most support to those with this disease and their loved ones.
1. Connect with a neurologist with whom you feel good chemistry
This is a roller coaster type of disease (that can last decades) with many symptoms that are unusual — some people experience nightmares or extreme dreams, significant constipation, and/or depression. Each person has a unique experience with the disease, so finding a neurologist who is easily available for unscheduled appointments, who takes time with patients, and who is a good listener and a good teacher are vital.
2. Become a student ~ information is gold
- Read, Read, Read. Search Amazon for books and follow national groups, such as the National Parkinson’s Foundation and The Michael J. Fox Foundation
- Go to every seminar you can find. Medical communities often provide day-long or several-day seminars. Terrific high-caliber speakers will keep you abreast of the ever-changing treatments; and sponsorship by companies who have useful resources will connect you to supplies, equipment, and technology.
- Join a local support group. This is useful for the caregiver and for the person with Parkinson’s as well. Like finding the right neurologist, it is important to find the group the suits you most comfortably. Groups vary in their styles, sizes, and personalities.
Dance…Walk… Play Tennis…Bicycle…Golf…Stretch. This component cannot be emphasized enough. Consistent appropriate exercise is life-changing for the person with Parkinson’s. DO NOT THINK THAT YOU CANNOT BECOME AN EXERCISER AT THIS POINT IN YOUR LIFE...no matter your age or the level of severity of your disease, incorporating the right type of exercise will provide physical benefit and noticeable improvement with memory and mood. Amazing positive effect of bicycling in reduction of tremors was discovered accidentally (http://www.medicalnewstoday.com/articles/253197.php ).
4. Add specialized professionals to your team
Elder Care Attorney… Estate Planner…Certified Professional Accountant…Aging Life Care Professional. Start planning early so that you are not caught in a crisis without the compass you need to navigate through unfamiliar territory. Although all of us should have a workable knowledge and actual plans and documents in place as we age or manage a disease, it is more crucial for the family who is managing Parkinson’s. This is the case due to possible changes in cognitive function impeding decision-making or financial management. And sudden physical changes mandating the need for rehabilitation, caregivers, or medical equipment.
Parkinson’s is a complex disease that is made more manageable when you have created a useful and available team. In my area of expertise, I often find all the professionals listed above serving together and communicating in tandem with the client who has Parkinson’s.
More about the Aging Life Care Professional
All you have read above comes from the experience of an Aging Life Care Professional. Connecting with one of these professionals will make your journey more manageable, with fewer dead ends, and quicker connection to resources, support, doctors, caregivers, and even equipment.
This professional can provide a one-time consultation to get you started with understanding various points to prepare as you begin living with Parkinson’s and be available to you through the years on and off as you need, or can be active on your team ongoing and as involved as you desire.
Not only do individuals with Parkinson’s and their immediate support persons appreciate the relief of having a professional to lean upon, but adult children also express gratitude knowing there is a local person providing support as the terrain becomes more rugged, serving as the resource for knowledge and direction as they support parents along this path.
To find an Aging Life Care Professional near you, search our directory of experts at aginglifecare.org.
About the author: Lisa Laney, MSW, CMC is the owner of Mountain Premier Care Navigation in Asheville, North Carolina, and has worked with the aging population in the healthcare system since 1988. She serves as the facilitator for the Asheville Parkinson’s Support Group and is on the Board of Directors for the Aging Life Care Association. She can be reached at firstname.lastname@example.org or on Facebook.
This blog is for informational purposes only and does not constitute, nor is it intended to be a substitute for, professional advice, diagnosis, or treatment. Information on this blog does not necessarily reflect official positions of the Aging Life Care Association™ and is provided “as is” without warranty. Always consult with a qualified professional with any particular questions you may have regarding your or a family member’s needs.