Parkinson's: Building Community

Snarky Parky & me  

Journey Into Parkinson's

With Nancy Mellon

Blog Coordinated by Corrine Bayraktaroglu

Ai prompt by c.bayrak

Building Our Community

Through Talking To Each Other

What makes community? It is something I have cherished about living in Yellow Springs. Is it having thoughts or beliefs in common? Doing fun things together? Sharing traditions, experiences and memories? Is it shopping in the same places, talking together, laughing together., going to the same schools? Meeting up with the same faces over and over on our walks? Stopping to say hello, and to chat? Meeting new people with a welcoming smile? Is it caring for one another? Helping others in the community, when they are in need? Is it fighting together for the same causes? Is it a mixture of these things, that is different for different people? Is there anything that is in common to everyone's sense of community?

Could it be for some of us, having the same disease? Do we automatically have a community of friends when we have Parkinson's? I feel there is usually empathy with someone else going though the same problems, but only if you know what they are facing. So does community take talking together?

I think that in having the same disease, we have a chance at building a community, but we still need to put in the time and openness to talk together and do things together.

Which brings us to the purpose driven point, of this post . (Yep, prepare thyself, there is a point coming up.) I want to build a community. I wish that the people who read my posts would share more comments about what they have happening in their lives.You don't know who needs to hear what you have to say.

I am pretty sure that everyone with PD, or aging, or life in general, is struggling in some way.   But, at least with the PwP, we usually don't hear about it, (I have been surprised with how much we don't talk to each other,) so we cant learn from each other..

My PD friend Sue, is our next guest post. (Thank you, Sue!) She has also been struggling with many off times during each day. We have written to each other about it and about what we are researching, trying and finally doing to help ourselves. (We also write about other stuff too..) What has happened is that we have helped each other, besides ourselves. I have felt my friendship deepen with Sue because of it. Though Sue lives an hour away, and we have only seen each other in person one time so far, she has become part of my community.

So, in the interest of growing community, here is my PD report: (You are lucky it is not the Poop Report. And that is all I am going to say about that..)

Right now, I am doing better with Rasagiline, the new medicine that my Doctor and I have added on to my carbidopa/levodopa. It is helping curb my off times. Yay! AND on many, amazing nights, it allows me to sleep longer..

• My Doctor prescribed it.

• I bought it.

• BUT I wasn't willing to try it.

• Why?

• On the label of this drug's container, and in the long paper about all the possible side effects from this drug, is a warning about the many foods and drinks you must not consume while taking Rasagiline.

• I talked to my Dr. about it.

• He said not to worry about it, it was blah, blah, blah.

• That's all I heard. I didn't know who to believe my Dr. or my Pharmacist,. isn't their training all in medicines?.

When I wrote to Sue about it, I found out she had tried Rasagiline last year,The Rasagiline worked for her, for about 6 months. . AND her Doctor's had said the same thing my Dr. had said about the food Warning problem. Sue had worried about it some but decided to eat smaller amounts, not as often, of those items,(well most of the time. She said it didn't stop her from putting on a pile of Parmesan cheese on her pasta.). She hasn't felt any ill affects from it. So finally, I was able to believe my doctor and take the rasagiline that I had bought 4? months ago.. (I know, I have my ridiculous moments, just laugh with me please.)

I have my fingers crossed that the Rasagiline will work longer for me than six months.

I hope, it is your turn now.....

Cheers,

Nancy and the Snark