MyParkinsonsTeam is quite a unique site in supporting those with Parkinson’s disease (PD). It has been a real joy for me to connect with so many people from around the world who suffer with this disease or care for someone who has it, and to be able to interact and communicate with them. The social aspect has become quite important to me because we become good friends. I find a sense of love, support, encouragement, and advice among team members. We also become close as an online family and community through the trials we face daily in dealing with this disease. We can be ourselves within MyParkinsonsTeam because we all understand the nature and difficulties we all face.
We can share our victories, frustrations, ups and downs, and share things happening in and around our lives and families. This all helps bind us together and makes us feel wanted and appreciated. I have referred to us all in MyParkinsonsTeam as being in a big boat called the “PD Ark.” No matter how much or how little support we have from family, friends, and acquaintances, most don't comprehend, see, or understand all the physical and mental struggles we go through as sufferers and caregivers. For some, our sense of loss of empowerment over our lives, and even a sense of loneliness, can be overwhelming at times. But within the MyParkinsonsTeam PD Ark we are only a click away from each other. This social impact is of huge importance, whether we are newly diagnosed or have been on the journey some years. We are each other’s support crew.
I visit MyParkinsonsTeam daily to see what the team has been posting, give encouragement, support, and prayer as may be necessary and answer any questions from my PD experiences and knowledge that might be of assistance. In the same way, I am learning from other team members. I am fortunate that I am in the early/mild stage of PD and my symptoms are mainly under control with the medications - except when something comes out of left field - so I am still able to do most things I need to do. I just take things slower with plenty of rest breaks. The greatest advice I received from my neurologist was to exercise, exercise, exercise as it is the only way to slow down the progression of PD symptoms. I am glad I heeded his advice.
What have I learned in relation to PD? We are all different in how the disease manifests itself in us, and what works for one may not necessarily work for another. Your communication with your neurologist and local doctor is critical. Keep a diary with dates and times of any changes in symptoms and medications and what effects they are having. Research and learn as much as possible about PD so you can ask questions.
PD is a long journey. Look on it as a challenge. It is not the end of life. There is still much to live for. The challenge is to fight, not run. Adjust and modify as needed, but push onward. Look for the positives and don't dwell on the negatives. It really depends on your own attitude and perspectives on life. Will you take the challenge? You might be surprised at what you can achieve. Get started. Members of MyParkinsonsTeam - will help and encourage you along the way.
This article was written by MyParkinsonsTeam member Brent as part of the Member Spotlight Series. Brent is retired, lives in New Zealand, and likes to exercise to help with his Parkinson’s.
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