Having been an extremely healthy person all my life, this diagnosis of Parkinson's came out of the blue and hit me hard. But like I try to do with most problems in my life, I took on the challenge and started to do research to see how to solve or fix it. What I learned is there is no fixing or solving this problem!!! BUT, there were things I could do to "live with this disease well"! (Thank you David Zid for that quote). Here are some of the first pieces of advice I read that have made a huge impact on me and have framed how I live with this disease (not necessarily in the order of importance):
1. Be positive.
2. Stay in the present as much as possible. Avoid worrying about the "down the road what ifs" and concentrate on the here and now. (Of course planning for the future is important, but worrying about it is not!!)
3. Exercise, Exercise, Exercise!!!!
4. Be open about my disease. I read that those that are open about their disease seem to deal with it better. Every one is different though - so this may not be good advice for some. But it worked well for me - and I pretty much told all of my family, close friends, employer, and co-workers right away, in a positive and upbeat way - and then life went on as normal (well as normal as possible for someone who has Parkinson's. lol)
5. Be proactive - research and learn about the disease and the medications as much as possible. (I am not sure my doctor appreciates this - but he has learned to deal with all my questions and now knows that I read everything I can find about Parkinsons!! )
6. Use a sense of humor as much as possible. (laughing about things feels so much better than crying about them!!)
7. Maintain a strong faith in God and count my blessings! God's blessings and tender mercies in my life are truly amazing!
Everyone is different and has their own way of coping - but staying focused on the above items has helped me immensely - not only with Parkinson's, but also with other challenges I have had to face!
(However -when all these efforts fail, and my mood sinks - which it sometimes does - I throw myself a really good pity party - which always includes chocolate for refreshments! Chocolate has not failed me yet and ALWAYS makes me feel a whole lot better!!)
Nothing wrong with a good pity party with servings of chocolate or ice cream now and then. It's great for relieving (somewhat) that stress and constant fight taking place daily.
ReplyDeleteAnother point to add to your list: Find and communicate with others dealing with the same long term disease (not just Parkinson's). It's so much easier dealing with the disease knowing others are experiencing the same problems and sharing those trials with others. I know doing so, has helped you fight Parkinson's, and myself dealing with 24/7 caregiving.
Keep up the fight. Hugs, Dan
You are right Dan - I did forget that important one. Daily Strength Parkinson's online support group and all the wonderful people, including you, on there have been a God send to me! Another group that I joined with from John Hopkins, "Ask your Neurologist" support group discussions, has also been a huge help and an amazing resource of information. Thanks for reminding me!!!
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