What would I tell my newly diagnosed self…

I am a member of a Parkinson’s Facebook group and find it very helpful hearing from others with this condition. It is a very positive group and they have themes on it like ‘Talent Tuesday’ where you are encouraged to share a skill or talent you have. Other days have other themes, but always you are encouraged to look at positive aspects of your life PD or no PD. I had been on another FB Page as well, but found that for some reason there was a lot of negativity and it wasn’t helping me to follow that group. I have since – on the advice of my daughter-in-law – stopped following this group.

Anyway. On the Parkinson’s Facebook page that I continue to follow, the question was asked about what you would tell newly diagnosed you. This is certainly a journey in which you learn so much along the way.

Things I have learned and that I would want to pass on are:

  • Tell your friends and family early. You will need their support. It takes far too much effort as well to try to cover up your symptoms if you don’t.
  • Tell those you work with early. You may need to have time off for appointments as well as needing support in your work environment.
  • Try – if you can – to focus on what you can do and celebrate that, rather than focussing on things that are difficult for you.
  • Develop a good relationship with your GP. You may need to educate them though, that Parkinson’s is not just about tremor and mobility issues.
  • Don’t put everything down to Parkinson’s and dismiss new symptoms. You could miss another health condition that needs to be addressed.
  • Try to live in the present as much as possible. Looking too far ahead to things that may not happen is the route to depression and despair.
  • If you have family or friends that have had Parkinson’s in the past, remember their journey is not yours. Advances in medications and knowledge of things that help like exercise will make a difference. Your experience may be completely different.
  • Don’t put things off. Travel while you are still able and make memories to bank for the future.
  • Find an outlet for your thoughts and feelings. If you can access support groups this may be helpful. If you have a partner/spouse tell them how you feel and encourage them to do the same.
  • I find it helps to write down my thoughts and feelings. Perhaps keep a journal. You don’t necessarily have to share it with anyone.
  • Look into online supports and information. Blogs by people with Parkinson’s and by their partners are great for lived experiences. I found this list invaluable and I follow their Blogs https://www.everydayhealth.com/parkinsons-disease/living-with/best-parkinsons-disease-blogs/
  • Check out the Michael J Fox Foundation. Great stories from people with PD and lots of good information. To me Michael J Fox is a hero and a legend. https://www.michaeljfox.org/
  • Rather than giving up on things that become challenging, see if there is a way to modify them so you can continue to participate. As an example, I found I was getting really tired riding my bike and had fallen a few times as I had to get my leg over a high bar to dismount. I thought I would have to give up riding a bike, but instead invested in an e-bike. One of the best things I’ve done. It means I have the confidence to go out by myself and not worry about having the energy to get home. This article I found talks about the benefits. https://davisphinneyfoundation.org/everything-you-ever-wanted-to-know-about-ebikes-for-people-with-parkinsons-and-more/
  • Try not to make your life all about Parkinson’s. Just as you need to have someone to talk to about this condition, it is also healthy to have friends that you can spend time with and focus on other aspects of life.
  • If you have children or grandchildren, spend time with them often, so you stay connected. I am lucky to live in the same city as three of my grandchildren and have them to stay as much as I can. They like doing baking and cooking with me and I am saving recipes in a clear file that they can make when all they have is memories…
  • Be open and honest with those who care about you. If you are having a tough time, talk to someone. Don’t bottle things up. You’re allowed to have not so good days. This is a hard road and I think we need to acknowledge that from time to time.
  • Put legal things in place while you still have the cognitive ability to do so. In New Zealand we have Enduring Power of Attorney to nominate someone to act on your behalf when you are no longer able to. https://www.justice.govt.nz/family/powers-to-make-decisions/the-court-and-enduring-power-of-attorney-epa/

I learn more about this condition I have every day. I am trying my best to remain positive, while being realistic about some of my day-to-day challenges. But in the main, life is still good, and I choose to focus on the good in life more often than the not so good.

I hope these thoughts are helpful and reading my Blog helps others wherever they are. I know it is the best therapy I could wish for.

Published by kiwipommysue

I work in health and have been with the same supportive team for over 7 years. They are all aware of my diagnosis and this helps tremendously especially while I get used to the idea of my diagnosis. My parents both had Parkinsons, so I guess my odds were higher than most.

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