Parkinson’s Life – Twitchy woman

Yes, it’s that time of year again. As we move into the holiday season, it is a good time to look back on the past year and reflect on the things that we can be thankful for. I know that for many people with Parkinson’s Disease and other chronic diseases, it is often difficult to find anything good in our lives. However, if we start by looking at the small things, we may see that there is much to be thankful for.

I saw this morning that Parkinson’s Life, from the UK, just reposted my blogpost from 3 years ago, about 10 things to be grateful for on Thanksgiving. So if they could use it again, I can. I reposted this 2 years ago with some changes. So here it is again, with a few more changes of course, because life has changed in the last 3 years.

10. Getting by on little sleep gives us much more time to spend playing games on our iPads in the middle of the night, while we are deluding ourselves into thinking that these games may actually help our brain cells regenerate. I have cut back on the games in the middle of the night, but sleep still eludes me. The latest research is showing that some of these brain games actually do help with memory.

Writing this blog is just one of my OCD behaviors.

9. We can blame our Obsessive/Compulsive behaviors (see #10) on our medications and the non-Parkies will believe us. Writing this blog is just one of my OCD behaviors. And because of this, I have begun writing letters to the editor and to others to express my opinion. And some have even been published. I have become much more vocal about many things.

8. Waking up at 5:00 am doesn’t seem so early anymore. But why am I always late to my 8:30 yoga class? (See #10. Still playing those stupid games on my iPad) Still waking up too early, but I get to walk my dog at dawn and enjoy the sunrise. And then I play those stupid games….. Still can’t seem to get to yoga on time, but we had another grandchild this year and I often talk to her mother as I am getting ready to leave. Besides, facetime with the grandchildren is much more important than being on time anywhere.

7. I can do things with my left hand now that I would not have been able to do if that damn tremor in my right hand didn’t act up when I am trying to do something like eating, writing, brushing my teeth……you fill in the blanks. Fortunately Sinimet has been very effective for me and I am right-handed again. Yeah! Another thing to be thankful for. Sinimet is still my saviour!!!

6. Living with PD has taught me to be more pro-active about my health. I keep up with the latest research and always go to my doctor with a list of questions and concerns. This is probably the most important thing that I have learned in the last few years. My internist jokes that I know more about PD than he does.

5. All of the new friends that I have made who also have PD. We can laugh and cry together about things that non-Parkies would never understand. Last January I started a group for women with PD in the Los Angeles area. As we have gotten to know each other, friendships have blossomed. We really do have a special bond because of PD. This really is a special bond. We found each other because of PD, and we are there to support each other cope with PD and other issues. More importantly, we also get to celebrate many good things together.

4. Fortunately I have a slowly progressing form of PD, which is controlled by meds. Better living through Chemistry is my mantra. And my progression continues to be very slow. And for that I am very thankful. The progression is still slow. I was diagnosed about 10 years ago, and I am very thankful and grateful that I really haven’t had to change much in my life because of Parkinson’s.

3. Laughing with PD. When all else fails, I can always blame stupid things I do on that !?@$# tremor. Enough said…..

2. Loving with PD means cherishing the life my husband and I have together and making adjustments as we need to when that @$#% Tremor gets in the way again. Our third grandchild was born in July, adding to the joy in our family. We are truly blessed. My husband, my daughters and their families give me the greatest joy. Our fourth grandchild was born this year, and I am most thankful that I can still sit on the floor and play with all of our grandchildren.

1. Living with PD has enabled me to reach out to others like you, hopefully making all of our lives just a little bit better. I thank all of you for your support over the last year and I hope that we will continue the dialogue for many years to come. Thank you! Your ongoing support of this blog has been a giant dopamine boost for me. Looking forward to sharing my thoughts with you again in the coming year.

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One last thank you: Thanks to all of you, Twitchy Woman was listed first in Everyday Health’s 10 Parkinson’s Disease Blogs to Help You Stay Fit and Positive and received recognition for the third year in a row from Feedspot, ranked #30 in their top 50 Parkinson’s blogs.

New Year’s Resolution: Be More Awesome than last year.

Have you made your new years resolutions? Are there things that you want to banish from your life? New things that you want to embrace? Something you have always dreamed of doing, but never thought was attainable. Should you wipe the slate clean and start over in the new year?

At yoga this morning, my yoga instructor had an interesting view about making resolutions for the new year. Look at something that has been a problem in the last year. Don’t banish it. View it as a small person to embrace. I had always looked at Parkinson’s as the Elephant in the Room, to be banished in whatever way possible. He says to look at it as a small person instead and embrace it. By looking at PD through this lens, look at the positives things about it and how you can overcome the negative – I know that is difficult – and see how you can manage your PD better.

With that in mind, knowing that Parkinson’s can always throw a wrench in the best made plans, here are some of my suggestions for 2018.

Keep on exercising as much as possible, a minimum of 5 days a week, including more strenuous exercise at least 3 of those days, As a friend from my boxing class said, because of all of this exercise, he is in the best shape, physically, that he has ever been. I agree. I am definitely stronger than I was before my diagnosis, even though I had been exercising for years. Focusing on what exercise I need to do to keep moving, I am also in the best shape I have ever been.
Try to learn something new. Yes, that small person may have been the reason that you had to stop doing something you enjoyed, so take that time and learn to play an instrument, learn a new language, take that class you never had time for before. I started taking piano lessons 4 years ago after a 50 year hiatus. It helped my hands become less stiff, and I have been having a great time. And don’t forget that we have been told many times that learning something new helps to reconnect some of the neurons in the brain, otherwise known as Neuroplasticity.
Do not identify yourself as “sick“. There has been a debate over the last few weeks whether Parkie’s are “sick“.* Many prefer to call it a chronic condition. You can give in to it and be a victim of PD, with all of the negative connotations that come with the word “disease“. Or you can choose to fight back and not let Parkinson’s win. In other words, embrace the “small person” in order to live a productive life.
Make a few resolutions that are within reach. Getting out of the house more often, visiting friends, eating better, etc. You know what you can achieve.
Resolve to be better informed about the latest developments in Parkinson’s research. There is a lot of good stuff happening and it is hard to keep on top of it. Subscribe to a few PD newsletters that you like. Too many and you will be overwhelmed. All of this research can impact you sometime in the future, so the more you stay of top of it, the more prepared you will be when you see your doctor.
Take that new information and write down a few questions for your doctor before every visit. Bring your care partner with you if possible so that they can become part of the conversation. Ask about new treatments that may be appropriate for you. And be honest about how your current treatment is working. If you are not seeing the results you had hoped for, your doctor needs to know in order to make changes in your meds, therapy, etc.
Finally, add a few resolutions that are a reach. You may not get there, or maybe, just maybe, you will surprise yourself and find yourself doing something that you always dreamed of but never thought would be possible because of Parkinson’s.

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