Lewy can be a crazy, disheartening, enlightening and at times, even funny roller coaster of a disease. As we know this disease is different for each of us. That is my PSA for my turkey day sharing with all of you. As we gather today, I am listening to Alice’s Restaurant by Arlo Guthrie. It is a tradition that one of our radio stations here in Philadelphia plays this classic 3 times on Thanksgiving, at 8am, 12pm, and 4pm. This is the first thing that I will say that I am thankful for. It truly puts a smile on my face. Cause I know “I can get anything I want at Alice’s Restaurant.”
The second thing I am thankful for is my friends. They check on me and joke with me to make me smile. They keep me on my toes with my articles. Most importantly they offer support and their prayers. This is uplifting to me, personally. So my friends are next on my Thanksgiving Thank You list.
My third thing to be thankful for are my new friends, better known as my Lewy family. I am thankful for each and everyone of you. I learn so much from each of you every day. Not every symptom or interaction is written on a list at the LBDA website. There are certain things that I go through that someone else will go through but not many more. If it wasn’t for our connections, albeit because of our uninvited guest to the table, we would not have the support, fellowship, and laughter to keep from crying. So here’s a raised glass to my new friends whom I think of as family, more and more everyday. Thank you.
My fourth thing to be thankful for are the doctors and nurses (especially the ones who have heard of LBD or know somewhat about it). When we have to go to ER and we see deer in headlights when we mention Lewy Body, we tell them to look it up and wait patiently. I will be more thankful when either more doctors know about it or treatment has been found so there are less affected by this disease. I am very thankful for our neurologist, she has been great for us.
The next thing I am thankful for is our caregivers. You don’t hear it enough but all of you rock. There is a point where we are no longer ourselves for all of the time. I am not there yet but I have seen a few who have. It is awful for the person with Lewy but worse for the caregiver. Each of them at some point take some “heat” from us. It is not intentional and nor do we ever want to hurt you. The Lewy has gotten to a point where it is mostly in charge of our brain. For myself, I apologize in advance for this to my caregiver and love of my life. My wife, Amy, who is pictured below with me.
Next, I am thankful for a roof over my head, the smell of a wonderful dinner being cooked, my family at home who always make me smile, shake me when I need it and support me in trying to stay busy to keep my mind off of this disease. Thank You, Amy, Liam, Aislynn, David and Brewer for keeping me propped up.
Thankful also for my brothers and sister whom I know are praying for me and are trying to learn more about this insane, no better word for it, disease. Thank you Larry, Brendan and Mary. Without all of you, I would be floating down an endless river.
Lastly, I want to Thank God for keeping me on an even keel, for giving me each new day to be with my friends and family, giving me Blessings to know You are with me and will always be. To be Blessed and when I lay my head down at night, to know You are near and have accepted my soul to be entrusted in Your watchful care gets me through this and every other challenge You bring my way. Thank you Lord for every minute of every day that is Your gift to me.
Thank you all and may you all have a Blessed Thanksgiving.
On a get ready for Christmas note, I am having T-shirts made with the minions on the front and the roller coaster on the back. I will have firm prices on Monday. I am looking into a quality but less expensive vendor. Currently they are around $27.00 if you are interested, please leave a comment with sizes and quantity.