Excerpt from 'saving me': I am penning... - Parkinson's Movement

Parkinson's Movement

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Excerpt from 'saving me'


I am penning a sort've 'self help' manual. It is only my opinion, my ideas and thoughts. My skill is simply that I have lived with PD for a long time. So here is a bit….

Filling gaps

I said how important it is to fill gaps but what do you fill them with? Luckily for me I have a creative streak so I am able to saturate my days ( and nights ) drawing, writing, playing drums, cooking, doing radio, thinking, sewing and generally using my imagination. What do you do however if you don’t know what to do?

Well firstly I start with the notion I can try anything, whether I end up doing the exact thing I think of or it just acted as a trigger, ultimately matters not. It does however have to achieve the following:

It has to give me joy.

It has to challenge me.

I need to be able to get better at it.

1. Looking back to your childhood is always a good place to start… the things you liked, the things you started but then gave up, the things you were good at.

2. Talk to people. Often the people around you can spot your talents before you do!

3. Brainstorm … but to do this effectively you need to go out and about first.

4. Think of 10 unusual places to go and then think about what you like about them, and how you could be creative.

5. Keep motivated, use the energy from the people around you to pull you forward when you need them to, but remember to give some energy back!

6. Be inspired, you wont be inspired if you sit at home and don’t engage things. You need to be in the world not on it

11 Replies

That is perfect! Thank you for this inspiration! Look up the future is bright... So many times I have to lift myself up out of the lack of dopamine. I make a list of things that I am thankful for and read it when I'm low. Thanks again for reminding me!

I may not do it as fast or as well as I used to but that doesn't matter !


You've hit the nail on the head! One needs to keep motivated and try new things or look to old interests, hobbies, etc. Often the motivation isn't there if we feel a bit down or not too well, but the crux of it is, keep doing something whether it is, playing drums, or banging on old tin cans, to making greetings cards. The secret is to keep motivated and make the brain do some work, and not let the illness take over your life.

It really does not matter what you do, as long as you do something, or have a go.

One of the good points of this site is there is always someone out there you can approach for some help or advice. we may be lonely. But we are never alone.

Yesterday was one of those days. I had to go to eye surgeon to be evaluated for cataract surgery. Thought my daughter would take me, but she has TBI and is easily overwhelmed. My assistant had to go to court. Fortunately my older daughter's assistant would be free around the time I had to leave the doctor's office. The eye drops made it impossible to leave on my own. I was both dyskinesiac and dystonic by the time we left. We took cross town bus and it was time to take my meds. A beautiful NYC summer day (so rare) we stopped at a waffle food truck and I took my meds with an ice coffee and a ice cream waffle with hot fudge. A west indian band was playing. Turned out to be the most fun I had all week later. A million thanks to everyone who helps me. I love you all.

I have taken to making my world a kinder place by being kind to everyone. My present hobby is painting the inside of our new home. I also remind myself daily of my blessings and live a life of gratitude. I am grateful for this site and the many inspiring people like yourself.

Hey Henderson. That's the way to go!


>>Landman: random acts of kindness are always a good way to escape the doldrums

I believe that PD is a message to really participate and take life in your own hands. As you say, being grateful and doing is immensely therapeutic. Thanks for sharing.

Thank you! Good advice and uplifting!

hi coleen

another good pso tfm you 1

i really think you arena amazing person!

lol Jill


Hi Henderson. Many years ago, after diagnosis, sitting around not knowing what to do, I did what many men seem to need to do. I thought I would write my 'memoirs'. That sounds rather grandiose, but was it? When I had written all the interesting things that I wanted my children and grandchildren to know about me, I realized that I had not found a title that was fitting. After many months of searching I came up with the title, "It's Not the Way You Start", implying that it is the way that you finish. I chose this because it turned out that many of the memories I talked about never had a proper ending.

You mention the things you started and then gave up. I wrote about many things I started, but did not finish. A job, which involved having to study and write exams for a qualification. I did all that, but with one subject still to finish, I resigned from that job and was never allowed to get that qualification. I went out with many young women, and when I realized that they were no the right one for me, I merely stopped seeing them. I did not finish the relationships off with a phone call or a letter, which might or might not have been welcome, I simply stopped seeing them. Now at the age of 79 I realize how cruel that was. How many of them would have wondered what they had done wrong, if anything.

There were many other things I did not finish, and have subsequently regretted not doing so. There were paintings in which I lost interest, songs I learned but never sang, an expensive camera that I never learned how to use etc, etc, etc.

You know what? We are all human! We all make mistakes! None of us is perfect!

For the first time in my life, I am now comfortable with myself. It has been a long journey, but I can now accept this imperfect ME.


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