In this blog today, I want to tell you and anyone who has been diagnosed with Parkinsons's disease in the last year and your family and friends some things that have been helpful to me as I have been on a life journey with PD for 11 years now. I hope these things I mention below might be helpful to others as well as you face PD or any other chronic illness. The challenge you face may seem daunting .... It will affect all parts of your life, eventually. But it is still possible to have a full and meaningful life while having Parkinson's disease! I know because I have! I was 40 years old, had a great job, was a mom to a 9 year old daughter, was active at home, work and church and was diagnosed with Parkinson's disease. I worked 5 more years and have had an active and fulfilling (althought challenging) life in the 11 years since my diagnosis.
Here are 10 things I'd like to share with anyone who has recently been diagnosed with PD (and their families and friends):
1. One of the hardest things you will do is to tell others about your illness. I think it is hard because we don't like to admit we can't control it, you don't know how it will affect you tomorrow much less 5 years from now. And even the people you tell the news to may only minimally educated about PD, so their preconceived perceptions of the illness may make them not know how to relate or know what to say to you at times.
2. Don't give up on yourself--get ready to think about things in a different light and to travel in a slower lane. But I can tell you this, I've learned alot and found parts of me I did not know existed in the slow lane, so get ready...life and PD ...they can bring out the best in you ....if you let them!
3. Take advantage of other's knowledge about your condition, yet take all advise under careful evaluation and scrutiny. BECOME your own health care advocate, and don't be afraid to ask questions.
4. Realize that PD is different for everyone (that is one reason it is so hard to diagnose, especially in younger people) including symptoms and progression.
5. Stay positive in attitude; be braver than you think you can; and fight for a cure. Think about it....you think many people who don't have an illness can even relate/??? IF they can't relate they will most likely not be of much help in facilitating a cure. Soooooooooo...
6. Educate yourself, your family and your friends; do things you know will help you help yourself.
7. You are gonna have lots of great days still, but learn how to handle both the good and the bad days.
8. You need to dig into each area that can influence PD in your life: physical, mental, spiritual. Of these, I consider the spiritual and the effort of prayer a great tool to cope with pd. And I ask others(without hesitation).... to pray for me as well. And always know, you ARE NOT ALONE!!!
9. Keep your routine as routine as possible but realize life goes on and some people will always be idiots. And remind yourself that this illness is hard for others to understand (remember that lil saying "sticks and stones may break my bones but words will never hurt me"? if not, you will now)until we get everyone educated or a cure is found!
10. Celebrate small victories and never, ever, ever give up hope!!! Just because you have this illness does not automatically mean you cannot reach your goals in life. But I would suggest you break down the goals into smaller goals and reassess how you can reach them and celebrate when you do. Celebrations are always good!!!! woooo hooooo!!!!!!
Hang in there friend! This journey, this challenge, this life altering illness is not for the faint, but you will discover amazing things through it if you have the right perspective and don't crawl in a hole and have a major pity party.
OK, I am gonna go celebrate the fact that I finished this article!!! Love and hugs to all of my friends affected by PD--you are my inspiration and a great source of strength for me!
Judy 12/22/13
Romans 5: 1-11
For more information on Parkinson's Disease this webpage has a link to many good resources: http://www.unitywalk.org/links.php
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