Coming Clean About My Health Condition-I Have .

Last Update: June 10, 2018

Parkinson’s Disease (PD)! Why is that difficult to communicate about one’s specific health conditions?

The Genesis

I was diagnosed with Parkinson’s disease (PD) in June of 2015, right after I turned 65.

I can remember when my family doctor suggested that I might have PD. He hesitated to be the first one to say those words.

Although PD was suspected from our readings and family discussions during the week leading to the visit to my doctor, the first reactions were those of fear, not knowing what the diagnosis meant and how it would impact my life. Included that day, even if it was for a quick minute, were thoughts of early demise!

But as soon as we took on the challenge, as a family, and went through the process of choosing a specialist and learning more about the diagnosis and various treatment options, I regained a sense of empowerment and determination to play a more pro-active role in my medical journey.

Whom to Tell about Something Like PD?

Meanwhile there was this question of whom to inform about a health condition such as PD. I had to come up with a communication strategy!

I will tell first all my five children. Then, my 4 out of 5 siblings. My oldest sister did not have an email. Next were my boss and associate bosses, as well as key administrative assistants. And lastly, the “closest” friends and “closest” colleagues, those 30 people or so that I consider to be more like family. All of that in a matter of a two-week span.

I stuck to the plan pretty much, except when I ran into somebody whose presence reminded me that they belonged to one of the 3 categories above (family, friends and closest colleagues).

There is some uneasiness about letting everybody know about one’s specific health conditions such as Cancer, Parkinson’s, Alzheimer, and the likes.

Still Going Public?

Although going public did not fit in my communication plan, I started thinking about exploring the blog space right away. Results, three years later: several scattered notes on my PD story and no blog and no blogpost!

Then came the end of my second month on WA, where I have had a slow start due to a number of reasons, including the search for a niche area.

Suddenly, a light bulb came on: continuing my communication strategy by extending the information about my PD to the WA Community and getting their help in going public!

Indeed, while I still do not understand yet the concept of niche identification, I strongly believe in the importance of sharing and documenting one’s progress and management of something like PD. It is going to be instantly informative as I go back to my scattered notes and post the most relevant ones. I will also be informing all of you—my new friends, about the current management of my PD and hopefully contributing to PD awareness from the perspective of a 60-something years old African man in the US since the 1970s.

Moral of the Story and Questions to You

It dawned on me that my PD story is going to be one of our 2-3 niches or websites, regardless of its earning capacity. And why not?

And although I am doing relatively very well (no need for words of sympathy, please), why is it difficult sometimes to inform others about certain health conditions?

Is it a matter of culture or the environment?

Thanks WA for allowing me to come clean about my health condition!

Ntam

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CarolMeador Premium
Hello, Ntam. As an occupational therapist, I can empathize with your desire to share your medical situation, but also your discomfort about divulging this information with certain people or groups of people. I greatly admire your courage and applaud your post.

As I was reading your post where you were talking about topics for your niche, I was thinking that you would be a natural to develop a website about PD. Glad you have decided to write about it.

Depending on your interest, I could see you able to compose articles on the history of the discovery of the disease, symptoms, etc., your PD journey (which you have so beautifully started here), treatments that have been recommended for you, treatments you have tried and the response you have had to it, and even natural remedies that are available if you were so inclined.

I can see a very enlightening and interesting website dawning on the horizon!

Good luck!

Carol
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Ntam101 Premium
Thanks, Carol, for those encouraging words. They mean a lot to me.

Regards,

Ntam
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CarolMeador Premium
You're certainly welcome, Ntam.
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NicoleO2 Premium Plus
Wow! It is all I can really say in regards to your health condition and how you are approaching it. I have a genetic disorder and have known since 2010. For various reasons I opted not to tell my parents, grand parents and most other family. They know my health is not the best but I didn't want to burden my mom with the knowledge that basically, she gave me bad health. I do not view it that way but I know from previous conversations that she worries that she did. Anyway, I am straying from your post and what I want to really say.

There are tons of people with PD. There are tons of websites that explain it and explain treatment options. What there is not a lot of is highly informative websites from a person who is currently going thru it. I honestly think you should focus on this as your main niche. Document your progress, the good, the bad and the ugly. Make people feel that you are going thru this with them. Have friends and family write from their perspective. I truly think this is a great way to monetize your site too. Like I mentioned about my health, I have a genetic condition. As you can imagine, there are support groups and the like. I can tell you from experience, one person writes that a particular product helped a particular problem and there are hoards of us asking for a link to buy the item. I am actually basing my niche on how to help people with general disabilities. So I may be slightly biased in my thinking, lol. I do know tho, that people with health problems are people willing to spend money for any amount of help. Here is an example. There is a company called the silver ring splint company. They make finger splints for a variety of problems. To my knowledge, they do very little business advertising but they have a thriving business. There are whole blogs dedicated to how to get your insurance to pay for the splints. Many insurances don't and many people are desperate enough thst they end up buying them any way. They are quite expensive and I have even seen people ask for money for splints for their birthday. So I really think you could do quite well with this. I am truly sorry that you or any one has to have this but man am I super excited that that someone has it, who also has the desire to document the journey!!
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Ntam101 Premium
WOW! is also what I can say about your comments re my post. They are so specific, so rich and so encouraging!
Thanks a million!
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NicoleO2 Premium Plus
:-) If you ever want to chat more about ideas for things to do with illness or WA, just PM me. :-)
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Ntam101 Premium
Thanks for your additional comment and offer of chatting with you on things to do with illness or WA. I am sure I will take you on it
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alwright01 Premium
My mother was diagnosed with cancer recently. And immediately I thought she was going to die. Idk why my brain went there first. I cried for like two days. My father a year ago was diagnosed with cancer as well and so this time it just hit so much harder. . Telling people must give a feeling of indifference. You don’t want people to feel sorry for you. But you don’t want people to wonder why they weren’t told. And then you come to terms with yourself that this is me. This is my life. I can tell who I want and not tell who I don’t want to know. Lol. . I didn’t tell anyone until my mom told me it was ok. To respect her feelings. I wish you all the best. And you are so right. This does open other avenues you can take. I wish you all the best.
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Ntam101 Premium
"I can tell who I want and not tell who I don’t want to know" I like that! Now I give you permission to tell your mom (and only your mom) about my condition! lol

Seriously though, I appreciate very much your comments.
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CarolMeador Premium
I appreciate your sense of humor, Ntam!
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Ntam101 Premium
It was you who encouraged the use of humor on this platform, as I recall. I appreciate a good sense of humor, and I appreciate you for that, Carol.

Thanks!

Ntam
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CarolMeador Premium
That's true. Laughter is good for us all. Thanks for appreciating my sometimes wacky sense of humor, and for sharing yours as well.
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smokeywins Premium
Like Cancer, PD is becoming more and more common. I have first-hand experience with this disease. My dad was diagnosed many years ago, I lost track of specifically when. The tremors were controllable when he focused on them.

He lived for many years post diagnosis, but over time the freezing, and tremors made difficult for him to do the work he used to, so my parents made the decision to close their business.

Then in 2015, he was diagnosed with metastatic pancreatic cancer. We lost him in the fall of 2015, at 69 years old. Many think it was cancer that took him, but instead, he starved to death from a lesser known PD side effect. The throat muscles began to fail, preventing him from swallowing simple things like water.

I don't write this to scare, as I know that having the disease is hard enough to handle. I now live with cancer, diagnosed the year after my father passed, so that comes with its own struggles.

Talking about our health is always difficult, and you're right, it shouldn't be. Sadly it's just part of life. I think you're definitely onto something with using it as a niche, because like with cancer, it helps to have real-life experiences for others to read, that is not just medical documentation, as it can help them better deal with their own diagnosis.

Keep on fighting!
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Ntam101 Premium
Thanks a million for conveying your personal and family situation and for encouraging me to pursue this a niche possibility.

Your comments about the trajectory of your dad's PD reminds me of the need to follow up with the prescription for swallowing therapy that I have had for the last 4 months!

Thanks, again!
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VicLees Premium
sorry to hear----I wish you all the best in your battle.
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