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:
 
 
 
 
 
 
 
DBS – No Stress. Yeah. Right.

DBS – No Stress. Yeah. Right.

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It’s been over 15 years since I began to experience symptoms relating to Parkinson’s disease.

It’s been ten years since I was officially diagnosed with PD.

It’s been three years since having had Deep Brain Stimulation for my right side.

It’s been two years since having had DBS for my left side.

It’s been one day since discovering I get todo it again, due to one of the wires breaking.

I don’t know how. I don’t know why. I don’t know when.

All I know is it happened. That is probably why I haven’t felt up to par. Why I have had tremors worse than ever. Why the dyskenesia has started up again. Why this and why that.

The first time I went in for DBS I had such a peace about things. The second time, I had peace but I didn’t really want to do it again. But I knew it was best. This time, I cried when the doctor called me to tell me the reason the stiulator wasn’t functioning properly. I am trying to figure out why I am so discouraged over this. And I think I know why.

It’s not that I won’t do it again. It’s not that I don’t believe it’s worth it. It’s that I have to make another trip to Arizona to have it done. My new doctor wants my old surgeon to do it. And I don’t mind that. I think he’s tops and she doens’t know him, but she agrees, having seen how he did mine compared to other techniques she has seen. But you see, there are other factors involved in this ‘correction’. One, my old neurologist won’t be there. My doctor in shining armor. There was a huge difference in how I felt I did between the first and the second, when he was present and when he wasn’t. The first experience was much better knowing he was there. 

A friend of mine had DBS earlier this year and she had teased me slightly by telling me I thought my doctor was God himself. I have never gone to that level of thinking, but angel status – maybe. I had told her about different experiences with my doctor and how during my DBS surgery, my neurologist stayed all five hours beside me, holding my hand so that when they woke me at different intervals to make sure they were placing things in hteir proper places, he would be there. It gave me a calm and a peace I didn’t expect. I know that peace doesn’t come from your doctor, but I believed God worked through him to know that is what I needed. Then, my friend had DBS and she experienced the same thing. She said it made all the difference in the world. Hmmm… hadn’t I said that?

The second surgery I felt alone. I didn’t know any of the team, except my surgeon, who did the first one as well, but that’s was my extent of knowing him. I was apprehensive for that reason alone. But I got through it. Reluctantly.

And now I am looking at a third surgery. A new doctor in an old setting with no one familiar and I am again, apprehensive. Even more so this time around.

And this comes on the heels of two major experiences within our family. But…

I was thinking.

Yesterday, God was the same as the day before when I answered the telephone to hear the message from my doctor. The day  before he knew what was going to happen the next day and he knew why he was going to let it happen. I didn’t. I still don’t. But it did. And he knew how I’d react and that I’d need a tad bit more grace to see me through. And so He extended that grace through my husband, my daughter, and my two sons. 

I am well loved. I am well cared for. And we will get through this because even though no one familiar may stand by my side for others to see, my God will be there, not only standing, comforting, waiting with me though it, but He’ll be overseeing the whole thing and guiding the hands of the surgeons as they drill yet another hole in my head. 

At least I know I don’t have a screw loose anymore, my husband so kindly told me. Now we know it’s been a wire. 

Thanks, dear.

 

Day 11: World Parkinson’s Day

World Parkinson’s Day is celebrated annually on April 11, in the midst of Parkinson’s Awareness Month (April). It also just happens to be Dr. James Parkinson’s birthday, who is believed to have ‘discovered’ Parkinson’s disease. (I don’t think James discovered it. I think the first patient actually discovered it and he just put a name to it. Picky. Picky.)

Anyhow, because the good doctor’s birthday fell on April 11th (not that it wouldn’t have happened otherwise), the PD community set out to make it a cause of celebration in an effort to bring attention/awareness to this, what many consider a devastating and debilitating disease. The first event to commemorate awareness took place in 1997, when more than 30 organizations representing PD came together.

The day is specifically set aside – and now the entire month – to get the word out about PD. As a result, the more attention there is on this disease, the more activity and talk about it there will be and the more talk and activity, the more interest in research, and the more research, the more hopes for and coming closer to a cure.

It may have taken over forty years to credit the disease with James Parkinson’s name, but it’s taken over 150 years to finally draw enough attention to this dreaded disease, eventually setting aside a month in the calendar year in order to strive in making it more widely known.

Since it’s finally happened – let’s say we keep running toward the goal: to find a cure. And let’s not stop or slow down until it’s a done deal. Are you in? What ideas do you have to raise awareness?

 

Day 6: New!!!! Comprehensive Guide to Blogs About Parkinson’s Disease

Day 6: New!!!! Comprehensive Guide to Blogs About Parkinson’s Disease

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Ever wish you knew where to turn to? Someone who’d understand  the fears you may have? Perhaps you’re considering Deep Brain Stimulation and would like to talk to someone who’s actually been there. Done that. Or maybe you just want to know more about Parkinson’s disease from someone with first hand experience.

Parkinson’s Journey now offers a comprehensive list of blogs by those who you’re seeking support from. Just click here to get there. There’s plenty to choose from with a brief description of what each offers.

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