Day 16: Here’s What PD Feels Like and What DBS Did…

Day 16: Here’s What PD Feels Like and What DBS Did…

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I have been blessed by having Parkinson’s disease. Do I like having it? NO. But I have seen and experienced tremendous blessings because of it. Here are a few:

  • I have met and have had the privilege of knowing and being treated by one of the most knowlegeable, gifted, and wisest men in the movement disorders area of neurology. He has treated me for over ten years now and I feel blessed to be able to call him not just my neurologist, but friend.
  • I have had to learn to receive because I can no longer just give. This was a very uncomfortable but incredible blessing.
  • I have learned anew the worth and value of each fleeting moment, each new day.
  • I have met some incredible people because of this disease. My favorites? Hands down – Judy Hensley and Tina Lagonegro to name two. Here’s why…
First there is a deep bond because of the Lord. Add with it Parkinson’s disease and you add a level of understanding that is hard to have unless one has walked a similar path. 
 
Judy and I met online through a community  health forum. We hit it off right away. She has become to me a comrade, a blessing beyond words and one of my dearest friends. I had the priviledge of meeting her several years ago when I was able to go and spend two weeks with her in Tennessee. I reflected on that trip upon returning home and was quite surprised at myself. First of all that I did something very unlike me (visiting someone I had never met (in person) – solo, mind you). Secondly that the visit was two weeks long with someone I had never met in person. And third, my reflecting made me realize that within that two weeks I never once felt awkward, uncomfortable, or like we had never met. Kindred spirits. There is no one like Judy, who if you didn’t know, owns the famous ‘da Coat, which has helped in raising awareness for PD worldwide.
 
And then there is Tina. There is no one like Tina. Tina is one of the sweetest women I’ve ever known and like Judy and I, also loves to see the wonder of God through the lens of the camera. Tina is an inspiration and a great encouragement to me. I’ve yet to meet her in person, but I am sure it will be as if we have known each other forever.
 
I mention these two wonderful women because they are blessings born out of having Parkinson’s disease. And also to lead into a video that Tina is in where she shares her struggle with PD. I encourage you to watch it if you want a first hand account of what PD is really like. (Tina’s section begins approximately 4:20)
 
 
The following photos were taken by Tina:
 
 
 
 
 
The following photos were taken by Judy Hensley:
 
 
 
 
 
 
 
Day 15: Ten Things Parkinson’s Patients Want

Day 15: Ten Things Parkinson’s Patients Want

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  1. To feel good.
  2. To smell (what’s baking in the oven).
  3. To have people believe that the person with PD isn't pretending to have a chronic disease. Really. We have better things to do.
  4. For others to understand that although they can’t see all of the effects, the disease is real.
  5. More dopamine. We gotta have more cow bell dopamine.
  6. To not shake all the time. It would be so nice to stir our coffee because we want to.
  7. For others to be aware of the struggles and invisible symptoms people with Parkinson’s face so that they are better able to understand the fervency and urgency of a cure.
  8. To find a drug that doesn’t knock you out for half the day, but instead, knocks out PD.
  9. A plastic bat to hit others over the head when they make thoughtless comments.
  10. A cure.

 

Day 14: One of the First INVISIBLE Signs of Parkinson’s Disease

Day 14: One of the First INVISIBLE Signs of Parkinson’s Disease

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Were you aware that depression is one of the first and ongoing signs of Parkinson’s disease? Yep.

So maybe, just maybe, those mood swings you or a loved one has been struggling with in their journey with PD can be alleviated with some help from your doctor. And maybe, just maybe, you’ll feel a little bit more normal once again.

Whatever normal is!

 

Day 13: Most Common Symptoms of Parkinson’s Disease

Day 13: Most Common Symptoms of Parkinson’s Disease

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The first most common symptoms of Parkinson’s Disease:

  • tremors
  • depression
  • loss of sense of smell
  • stiffness
  • arm that won’t swing
  • tripping
  • handwriting changes – smaller/illegible

It’s important to keep in mind that each case is unique and different and each individual should seek expert medical advice if they are experiencing any of the above symptoms.

Day 12: Feeling Better, Getting Better

Okay, so maybe you won’t be jumping off a snow covered mountain peak on a snowboard or skateboarding down a rail, but having Parkinson’s disease is not a death sentence and there are so many things available for you to still do and many things you’ve loved to do are still available as well, perhaps just at a slower pace. Don’t live a glass-half-empty life. Life is much too short.

Studies have shown that exercise is one of the very best things you can do for yourself if you have PD, walking being one of the best choices. Physical therapy is a bonus and they can teach you what’s safe and doable without hurting yourself, which is important to consider with PD and it’s limitations. A walking partner can make all the difference. Ask someone to start walking with you.

Swimming is a great therapeutic exercise in so very many ways and exercises many muscles much gentler than other programs.

Painting is possible! Check out this site: The PD Gallery of Painters

Biking is another great way to get exercise that has proven to be extremely beneficial for PD’ers.

If you don’t want to go out of the house to exercise, check out the ‘Wii-Fit’.

Write daily – keep a journal. Also – crossword puzzles, Soduko and the like keep the mind active.

Take pictures of the things that bring you joy!

Take a dance class. Studies are showing this to be great exercise and therapy for PD patients. If you don’t have a partner, find one.

Get into a singing group to stretch and strengthen vocal cords – church choir? local singing ensemble? Check out Tremble Clefs , a program started specifically for PD’ers to come together for music, fun, and to strengthen their voices! A nationwide program.

Volunteer at the local hospital, a nursing home, after school tutoring for kids, reading to kids at libraries…

You don't have to be jumping out of an airplane or another extreme activity. Just get involved somewhere, doing something, with someone. You’ll be a better person physically, emotionally, and mentally.

 

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