Day 18: I Don’t Feel Like It

Day 18: I Don’t Feel Like It

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I told a friend last night that I feel disconnected. Disconnected from the PD ‘loop’, ‘circle’, whatever. If you’re involved with a Facebook PD ‘group’, you know that there is a growing force of people trying to make a difference in finding a cure for Parkinson’s disease. They are trying to get people to step out of their comfort zones (for some) and get involved in fund-raising and bringing awareness to this debilitating disease.

However, I feel disconnected. Or perhaps a better word for it is… apathetic. Not intentionally. Not purposefully. Not willingly. I just do. And then I read this in the newest issue of the Northwest Parkinson’s Disease Foundation newsletter:

Barchester, UK – Apathy among people with Parkinson’s disease is a sign that the condition is getting worse, claims a new scientific study.

A new scientific study suggests that apathy shown by a person with Parkinson’s disease is a sign that the condition is worsening.

Research published in the Journal of Neurology, Neurosurgery and Psychiatry suggest that apathy can be caused by changes in the brain resulting from the condition, Parkinson’s UK reports.

The Norwegian study followed a group of 79 people diagnosed with Parkinson’s disease over a four-year period.

Commenting on the findings, Parkinson’s UK’s director of research Dr Kieron Breen said: “This is an important study that helps increase our knowledge and understanding of one of the common non-movement related symptoms of Parkinson’s.”

 

He went on to say that the charity’s own research had found apathy to be a common symptom, while understanding why people with the condition may be apathetic may help carers.

One in every 500 people in the UK has Parkinson’s disease, equating to around 120,000 people living with the condition, according to Parkinson’s UK.

So, perhaps my apathy is grounded. I surely hope not. Not now, not ever. I want to run this race in life well. I want to get to the end and know I did what I could with the opportunities I had and not look back with regrets. I want to be an encouragement to others and not a source of discouragement. But – sometimes we get too busy comparing our walk with others along the way. We feel inadequate if we aren’t doing what others are doing or prodding us to do. And that’s okay. Sometimes it’s not our turn to run. Sometimes it’s okay to walk and take your time. If we were all running at once, people would be getting shoved off the trail, knocked down and trampled on.

Maybe you’re discouraged today because you feel like you’re not doing enough to find a cure for PD or Alzheimer’s or Breast Cancer Research or MS or whatever it is you're fighting. Maybe it’s your turn to walk. Maybe it’s time to take a rest on the bench and give/donate to someone who is more able to run this time around. Whatever it is – do something, no matter how small – even writing a note of encouragement to someone on the front lines right now, fighting for a cure. Just don’t let apathy take over and keep you on the bench.

 

Day 17: Who Are They?

Day 17: Who Are They?

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What do these four men have in common?

They may all love kittens.

They all have winsome smiles.

At least one loved to draw cartoons.

For certain – they all have (or had) PD.

 

Who are they?

From left to right, top to bottom:

Johnny Cash (diagnosis at age 67)

Billy Graham (diagnosis at age 72)

Charles Schulz (diagnosis at age 76)

Michael J. Fox (diagnosis at age 30)

 

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!

 

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