Dear WinkWorld Readers,
In the past year, I published two WinkWorlds on my journey with Parkinson’s. In the first post, I said that it would also be my last on that topic. Obviously, that plan did not work. My new plan is to publish once or twice a year on this topic, in case it could help even one other person. I very much appreciate your many positive responses.
For me, Parkinson’s involves a Big Learning Curve
I suspect that I have had Parkinson’s for several years, but it was not officially diagnosed until last March 2024 in Tucson. At that time, I had also been struggling with a 4-month infection in my toe and too many rounds of antibiotics. I was not doing well, and my attitude was simply that now I would quietly slip into “that still night.”
I returned to the ranch in April and spent about a month researching Parkinson’s. I learned two things, which helped me immensely: First, no two cases of Parkinson’s are the same. Each of us has a unique path with the degenerative disease. Second, exercise is medicine, and the right meds are very helpful. This gave me hope, and I searched for specific guidance online and found many fabulous resources. (These are cited in the previous two WinkWorlds which are linked at the bottom of this post.) I will add to these online resources in this post also.
A year ago I couldn’t, and now I can…
A year ago I couldn’t write, and now I can. Not well. Slowly. And, not every day. But, if I know that I will have to sign my name, at least I now know that I will be able to do it. Losing my cursive handwriting has been one of my biggest challenges.
A year ago I couldn’t type on the computer, and now I can. Slowly. I have learned to use dictation, which is helpful. I have only recently noticed that I now often use my fingers to type, and not my dictation program. Texting on the phone still not possible, but the dictation works fairly well.
A year ago I couldn’t walk well and get around well without a cane or assistance, and now I can. I now walk two to four miles daily.
A year ago I couldn’t drive well, and now I can. In addition, I had a terrible time getting in and out of vehicles and fastening the seat belts. Don’t even ask me what it took to get in and out of Wink’s pickup. I had almost totally stopped driving as my arm ached constantly. I started with acupuncture and within a couple of months, the pain was gone. I remain pain free, and I am comfortable driving now. My personal best was a 5-hour trip alone one way in South Dakota.
A year ago I couldn’t get up and down off the floor, now I can. At PT and my Wellness exercise classes, we have to get down on our tummies, arms spread like Super Man, and then get up to do the next exercise. Several times in a row. Fast. While simultaneously doing a cognitive task (spelling, orally listing things in a category, etc.)! Turns out that there is greater cognitive benefit for us if we stack 2 or more physical exercises with a cognitive exercise–as opposed to perfecting any one activity. For example, my Wellness instructor (PT person) taped a large circle of blue tape on the floor and told me to walk the circle and stay only on the blue tape. While she timed me. Then she told me to count backwards by 7’s from 100 while walking the blue line on the floor, and being timed simultaneously. Tricky.
A year ago I couldn’t take care of myself physically, and now I can. I had trouble getting in and out of bed alone; getting dressed; and even getting my socks on alone. Dean, Dawn, and my Tucson friends/neighbors helped me. (Dawn has great stories…)
Cognitive challenges? I am holding steady on their tests.
My Parkinson’s is unique, but it is clear to me that if I had not done all of these exercises for the last several months, I would no longer be moving much.
Resources
My latest, greatest fav online resource is Rogue in Motion.
I love everything about Rogue, and now I use it as my primary resource.
PWR!
Parkinson Wellness Recovery
I am only beginning to learn about this location, but I have heard nothing but good.
LSVT
This was one of my first discoveries, and I think it is terrific.
Often referred to as:
LSVT Big and Loud
And/or LSVT Big
LSVT Global
LSVT Big Movements on youtube
Reposted below:
My first WinkWorld about Parkinson’s
Slide and Glide (or Loud and Proud)
June 21, 2024
My second WinkWorld about Parkinson’s
Boxing or Punching Parkinson’s
September 25, 2024
The next WinkWorld will highlight some of the fun things I have been doing in Tucson—other than my exercises.
at 12:52 pm
Inspiring! You also likely prevented other health problems. One can only imagine what, but you don’t have to since you prevented them. Movement, sleep and breathwork are golden healing modalities and prevention techniques.
I like to refer to NEURO:
N: Nutrition
E: Exercise
U: Unwind (Eliminate Stress)
R: Restorative sleep
O: Optimize learning
Throw on Purpose and Positive People and you have the keys to longevity!
at 1:06 pm
Praise be to God!
at 1:30 pm
Positive Progress Parky🩷 you are inspirational, and I am cheering you on wildly! Great information and I know will serve to support others. Thank you for sharing your journey. Much love 💕
at 1:46 pm
Dear Joan, You are an inspiration to everyone to all of us. Thank you for sharing your journey with us Parkinson’s. Sending hugs and love as you continue your steps through the unknown. BFF
at 1:54 pm
Thank you for sharing, Joan! Miss you
at 3:24 pm
You are such an inspiration to me and everyone around you. So happy that so much movement has returned to your life and those teeny tiny muscles are doing their job to support your daily life. 🥰🥰🥰
at 3:47 pm
Thank you for sharing❤️ How you do one thing is how you do everything. And you, my friend, have demonstrated tenaciousness, resiliency, and with the great ability to radiate joy over and over again. Proud of you.
at 4:21 pm
What you have shared with us is scary, yet you turn it into inspiration. It saddens my heart, yet your words are a source of strength and hope. I’ve loved you since the day I met you. You are my hero, and I hope that’s something that fills your heart. It’s so good to hear that researching, acting on hope, and healthy movement has made a difference. Thank you for all you offer.
at 4:42 pm
Thank you for you, Joan!
I have been inspired by your books for several years. Your journey with Parkinson’s and the resources you share inspire me to move again!
Peace and love- Rita
at 4:53 pm
Joan,
Thank you! I have been inspired by your books and scholarship. Your journey with Parkinson’s inspired me to get out of routine and move again-creatively!
Peace and love-Rita
at 4:49 pm
You are an inspiration Joan !!! Keep it up & keep the updates coming too!
at 5:47 pm
Thank you for continuing to teach through your journey, Joan. This lesson is a good reminder that we can all keep learning, even in the face of adversity.
at 5:53 pm
You are such an inspiration! Keep up the great work, Mama Bobcat!
at 6:16 pm
Hey Mobridge Flash—good to know you are movin & groovin!! Us old YC Grads know how to handle challenges and you are a great example—stay active and thank God for His mercy & guidance! Best to You, the Wink and your extended family, Ron & Jan
at 7:12 pm
Thank you, thank you, Joan, for the information and example you provide on how to live life!
at 8:58 pm
You are meeting well an unmet need!!!
Keep it up dear friend!
Beth
at 4:39 pm
Joan, my friend you don’t know the happiness we’re feeling after reading about the process you’ve made in your battle with health issues. Miracles are real. Jack and Diana
at 8:58 pm
You are the bravest, toughest, and most inspirational person that I have ever known! Your story is helping so many people with your disease and others. My broken arm is nothing compared to your journey with Parkinson’s. Love you and miss you!!!
at 9:17 pm
Oh Joan, I had no idea, and am so sorry to hear this. Your attitude is very much admired. I just want to share a favorite Bible scripture of mine, that I hope will give you a measure of comfort, and more hope!
Rev 21: 4 says God is going to do away with all pain and all suffering, even death in the very soon future.
Sending prayers, and hugs to you❣️🙏🏼
at 1:35 am
Joan, exercise really is medicine! My dad has Parkinson’s and it’s so different for everyone. I’m so glad you are able to continue to do the things you love, and I’m grateful for your fantastic support system!
Much love, hope to see you in Tucson soon. Will you be there for our birthday? Maybe I can arrange a trip!
at 4:00 am
I’m so glad you decided to share your courage, inspiration and joy with us once again! Please continue to do so!
With your permission, your words will travel beyond this group to others I know who are faced with similar challenges. “It takes a village,” to face these challenges of being human! Sending love!
at 5:13 am
Dear Joan, you have been an inspiration to me since my Stanislaus days, and you never fail to amaze me with your ability to find and spread joy and positivity! Thanks for sharing your journey, it’s so good to read about how you’re facing this challenge. Always teaching! Sending love and hugs.
at 5:33 pm
Joan,
I am not surprised that you have worked at succeeding in the multi-faceted approach of living better with Parkinsons and in sharing some details of the journey. Congratulations on gaining back more physical activity and incorporating multiple strategies to succeed.
at 8:56 pm
You are doing amazingly well.
I can readily see improvement from a year
ago when you were here🙏
Keep up your great work!!
Your admirer,
Beth
at 4:55 am
I am sure that there have been many moments, days and weeks of difficulty, yet you have persevered and kept learning, trying, and succeeding. What a great testimony!
at 12:51 pm
I so admire your positivity not just about this newest challenge of Parkinsons but about everything in life. When you visited the ranch at Christmas your smile lit up the room. One day I am going to come in and walk the mall with you. Much love!
at 12:51 pm
I so admire your positivity not just about this newest challenge of Parkinsons but about everything in life. When you visited the ranch at Christmas your smile lit up the room. One day I am going to come in and walk the mall with you. Much love!
at 3:19 pm
Joan
So glad you are doing so well! Keep it up! Praying for you.
Sharon