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Showing posts with label Parkinson's Chat Room. Show all posts
Showing posts with label Parkinson's Chat Room. Show all posts

Wednesday, March 13, 2013

You Have Just Been Diagnosed with Parkinson's, Now What?

First, don't panic. Go ahead and get mad, throw a fit, cry for a while, then get over it and get on with your life. It's just Parkinson's disease, it won't kill you. It could be a lot worse, you could have cancer.

Second, find out all you can about Parkinson's, go to the Parkinson's Association websites (I have links on here), talk to other Parkies, join a local support group. The more you know, the better you can do what's right for you. Don't count on your Doctor to tell you how to handle this, their job is to treat the part of your brain that is messed up. It's your job to figure out the rest. If there is a Movement Disorder Specialist (a neurologist who is a Parkinson's expert) within driving distance, try to see him or her. If not, see a neurologist, your primary care doctor isn't going to know enough to treat you properly (even though they may think they can).

Third, laugh. Laugh a lot. Parkinson's will make you walk funny, talk funny, write funny, think funny and make funny faces, so you might as well have fun with it and laugh. Laughter will stimulate your brain to produce more dopamine, so it really is the best medicine! 

Fourth, plan for your future, now. If you are younger, you will probably need to quit working before you thought you would, so start planning to be able to go without a job until you can get approved for disability (which in the USA can take several years). If you are considering moving into a different residence, think about stairs and tight hallways and tiny bathrooms that might give you problems down the road (the key word in this sentence is might).

Fifth, start being pro-active right now. Eat more fiber; it's not hard, buy a cereal with whole grains (Cheerios, Frosted Mini-Wheats or Raisin Bran). If it's not what you are used to, mix it in with your regular cereal. Buy whole wheat bread (they make some that tastes just like white bread). Add some carrot sticks to your evening snack, or a Caesar salad at dinner. 
Exercise or at least get up off the couch and move. Take a walk, stretch up and touch the top of the door frame every time you walk through a doorway, take extra long steps on the way to the fridge to get a bowl of ice cream. Parkinson's will make you curl up and get small, so fight it by doing things bigger.

Sixth, pay attention to what your body is doing. Make a chart of your symptoms, especially when you have a new prescription medicine or changed the dose. There is no testing for Parkinson's, YOU have to tell your Doctor exactly what is going on, so pay attention. Did that weird sensation start before or after you took that new Rx? Did the new Rx make you feel better or worse? Did it improve the tremor but cause another symptom? You NEED to know this.

Seventh, learn the Parkinson's medical jargon. After all those years in Medical School, your Doctor has forgotten how to talk like a normal person. He will only speak "Neuro-lese", so you best Learn the Lingo.

Eighth, talk to your family. The natural impulse is for them to "take over" and do anything that you have trouble doing. Tell them, nicely, that it is best for you to continue to do as much for yourself as you can. So what if it takes you fifteen minutes to button your shirt, you just need to start earlier. Ask them to please ask you IF you want help. If you do need help, ask for it, but be sure to say thank you afterwards, and mean it! Your whole family is affected by this Parkinson's thing, and they are just as scared, or more so, than you are.

Ninth, be aware that you are going to change both physically and emotionally. You may find yourself sleeping less, you may not enjoy the things you used to. Your face may become blank. All of these things can be harder on your family than it is on you, so try to be extra nice to them and explain ahead of time what might happen, so they can be prepared. 

Tenth, don't take Parkinson's too seriously. A positive attitude is actually beneficial for us. Laughing can stimulate your brain to produce more dopamine, so go ahead and cry, get mad, but then become a Happy Parkie. Keep a positive attitude, it REALLY does help.

And last, beware of people touting miracle cures. Yes, they may make you feel better for a little while, but if it was a real cure, one of the big Parkinson's Foundations would be shouting it from the rooftops.

Clicking on the colored words will open a new window and take you to a different story or link.

Saturday, December 31, 2011

What a difference a year makes!

Jeremy and me in Sept 2010
2010 was not a good year for me, I felt awful for most of the year. I don't know if it was the Parkinson's Disease or not.  2011 didn't start out well, either.  My best friend Jeremy, whom I had known for 30 years, died on Jan 12th.  I felt lost.  My Wonderful Husband did his best, but even he couldn't fix this.  

March came and things changed for the better.  I had written a song parody a few years earlier about the "snowbirds" leaving to go home for the summer and I decided to make a music video of the song and put it on YouTube.  Next thing I know, the local NBC station (KYMA) contacts me and wants me to come on their morning show to talk about my funny song.





I then saw an editorial in my local paper (Yuma Sun) about a Parkinson's Disease seminar.  I didn't know much about Parkinson's then, except that I had it.  It sounded informative, so I went to the seminar and learned more about Parkinson's Disease in 2 days than I had learned by having the disease for 11 years.  A speaker said "IF you are wide awake at 3 am and need someone to talk to, find a Parkinson's Chat Room, there will be other wide awake Parkies to chat with". I found a local Parkinson's support group as well.  

Within days, I was chatting with new friends from around the globe and they were laughing at my Parkinson's stories.  One of them, Karyn from Australia, suggested I start a Parkinson's humor blog, so I did.  I wrote my first story on July 17th and this is  number 50.  Who'd of thought I had that much to say?  And I never, ever, expected so many people to read it.  It amazes me everyday! 

Now here it is, the end of 2011 and I have 75 new Parky Facebook best friends, a couple dozen new Parky chat room best friends, a couple more dozen local Parky best friends and over 100 Twitter Parky best friends and I still have my Wonderful Husband. 

I wonder what new adventures will come my way in 2012?  Maybe Cat and I will actually get to meet Mr. Fox.  

I wish all of you a very Happy Parkie New Year!

PS Want to hear the whole song? It's called Another One Leaves the Park.





You can find all my videos on my YouTube channel:
Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parkie Day!

Friday, November 25, 2011

It's Friday, the day after Thanksgiving

Here's a new song parody I wrote about Thanksgiving.  It's meant to be funny.  Enjoy! 

Just click the > in the middle of the picture below and it should play it for you.




You can find all my videos on my YouTube channel:



Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parkie Day!

Wednesday, November 2, 2011

The Halloween Party

I often mention a Parkinson's Disease Chat Room on here and there is a really good reason.  The people on there like to have fun.  They had a party for Halloween night, an online party, anyone with a computer and internet could attend and you didn't even have to leave home.  The host of the party, Steve, played YouTube clips of the Monster Mash and Teen Wolf with Michael J Fox.  We told silly jokes and laughed at our real or Photoshop created costumes and for a little while, we were able to forget we had Parkinson's Disease and just have fun.  


As some of you know, I like to re-write the words to songs, so I wrote a humorous one about a Halloween Party and I picked out costumes for a whole bunch of my online friends.  Then, using their Facebook profile photos and Photoshop, I "put" them in the costumes and made a music video of my song and played it at the Party.  We had some great laughs and I think they all enjoyed it.  Here it is, just for you:





You can find all my videos on my YouTube channel:
Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parkie Day!

Saturday, September 17, 2011

A Sturdy New Desk


tiny desk in RV
My Wonderful Husband and I lived and traveled in a RV (recreational vehicle) for 16 years and the total living space was about 200 square feet, so my computer desk was very small.  Everything was small, but we were fine until my strange unknown illness made it difficult to navigate the tight hallways and I could no longer safely drive the truck and tow the RV.  


We then moved into a Park Model RV (a park model is a small manufactured home designed to be set up in a RV Park) which has about 400 sq ft of living space and my computer desk was still small.  I was living here when I finally got diagnosed with Parkinson's disease and stayed until those tight hallways and entrance steps became problematic.  


I now live in a normal size home, but I was still using the tiny homemade computer desk and normally that wouldn't be a problem, but I wobble, I really wobble, and I needed something much sturdier for a desk. 


I went shopping and found nothing I liked.  The desks were too big or not sturdy enough.  The Thrift Store Queen in me took over and I went to my favorite store, The Salvation Army, and found the perfect desk for me. It was real wood, so I bought it and got it home.


There are 2 things that I have always been good at:  Directions (GPS - 'girl passenger speaks' is a nickname) and Wiring (you name it, I can figure out how to wire it so it works). 


New desk 
I got down on the floor and started unhooking all the wires for the computer and everything else in that corner.  My Wonderful Husband then moved the old desk and put the new desk in place.  It fit, yippee, but it was 8 pm and I was worn out, so we decided to leave the rest until morning.


Guess what folks? Yup, I woke up at 4 am as usual and decided not to wait for Wonderful Hubby to wake up.  Heck, I was feeling limber, and I missed being online, so I got down on the floor and crawled under the desk and started wiring everything back.  Normally, that is a 5 minute job (keyboard, monitor and mouse), but not in our house.  My computer is connected to the usual items, plus a mixer, amp, karaoke machine, big flat panel TV, wireless speakers and 4 regular speakers.  The Wonderful Hubby and I share a printer, router and modem, and our computers are inter-connected as well, so it looks like wiring for the space shuttle back in that corner.
  
Sleeping by desk
I got everything hooked up and all the wires nice and neat and it was only 5 am, so I decided to go back to bed.  OOPS! I can't get up off floor; I've been down there too long.  I can't even pull myself up using the new desk.  Fortunately, I had put the nice thick bathroom rug down before I started and I could grab the pillow off my chair, so I just curled up and went to sleep. 



My Wonderful Hubby came in and took the picture (he knew it would make a blog story), then woke me up, got me up and all was well.  He even found a spot for the old desk; I use it for the Chat Room with a laptop.


PS Below is a picture of our RV and truck.





Clicking on the colored words will open a new window and take you to a different story or link.

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parkie Day!

Wednesday, August 17, 2011

A BIG DAY for my Parkinson's Disease Humor Blog

Well, today is a HUGE DAY for my little Parkinson's Disease Humor Blog! It is ONE month old and had it's 1000th reader, Andrew, a fellow Parkie from Australia whom I met in the Parkinson's Chat Room soon after I first logged in.  

I was awake very early one morning about 4 months ago (a common occurrence for us Parkies) and just wanted to talk to someone. I could have woke up my Wonderful Husband, but he looked sooo peaceful, sleeping soundly, that I just couldn't.
So, I Googled Parkinson's chat room, found one, logged in and hit the jackpot!  I wasn't alone! Also logged in was Mary L from Mississippi, Andrew from Australia and a lady from England. You see, when it's 4 am in Yuma, AZ, it's 6 am at Mary's, noon in England and 9 pm in Australia. 

We chatted about all kinds of things (some of it even related to Parkinson's), shared humorous stories and then Andrew showed us his pet snake, Pelorus, on the web cam. Now, most gals would have logged out, but I am a bit of a tomboy and I ain't scared of snakes. In fact, I even wrote a song about Andrew's snake for his birthday. One day, maybe someone who can actually sing, will record it! The bottom line, they all made me feel very welcome.

In the months since then, I have met many more Parkies from the USA and around the world. My Parky friends now outnumber all my other wonderful friends on Facebook! Another Aussie Parky, Karyn, is the one who inspired me to start this blog and she is writing one about getting DBS surgery.

I'd have to admit, when I wrote that first entry, at 4 am on a Sunday morning........I DID NOT THINK ANYONE would read it.......except my Wonderful Husband.  

Thanks everyone for proving me wrong!

Love always,
Yuma Bev  

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!  

Tuesday, July 19, 2011

Okay, Seriously...What is Parkinson's Disease?

Parkinson's disease is caused by the death of little neurons in an area of your brain called the substantia nigra (black substance), which is somewhere above the spinal cord. These little gray cells, as Hercule Poirot would call them, make a chemical called dopamine.

Dopamine is the stuff that helps your brain send messages to movement related parts of your body. As these neurons die off, less dopamine is produced and the messages get garbled. These garbled messages cause a myriad of symptoms, ranging from twitching pinkie fingers to becoming stiff and rigid like a mummy. Symptoms can change from hour to hour and day to day, but progressively becoming worse as more neurons go to gray cell heaven.

Each and every Parky (nickname for people with Parkinson's) can have different symptoms. Most start with just symptoms on one side of their bodies. Mine was my right hand, bad for a right handed person. If I had been a lefty, I might not have even noticed for awhile. Most notice a shaking or tremor as the first sign, others never get tremors and just feel like their limbs got filled with concrete when they weren't looking, others have dexterity problems. My first symptom was the inability to double click my computer mouse with my right index finger, even though I had done it the day before with no problems. These discrepancies can make diagnosis very difficult.  

There is no test for Parkinson's. Rule out everything else and then make an educated guess.  In my case, it took eight years before someone guessed right.  Another YOPD (Young person with Parkinson's) I met online, got the right guess the day after she noticed something amiss. The average for us Youngsters seems to be a couple of years. The Doctors are looking for other things, not an "old persons" disease and sometimes tell us that it's all in our head. That part they are actually right about. It is all in our head, it's just not imagined.


Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!

Sunday, July 17, 2011

I am Special

I AM SPECIAL and I have a sense of humor.  I have Young Onset Parkinson's Disease (YOPD), also known as early onset. What does Young Onset mean, exactly? It means that instead of waiting until my late sixties to get this disease, I was precocious and got it in my thirties. This makes me special, just like Michael J. Fox, but without his bank balance. It also means I didn't have to wait until 62 to collect Social Security or 65 to get on Medicare. I get both now, thanks to Parkinson's. Of course, the check I get is no where near what I made when I could still work, but I don't have to commute or wear heels!  

I may be special, but I am not rare. For awhile, I thought Mr. Fox and I were the only Young Onsets out there. I was wrong. I found a chat room for us Parkies (an affectionate term we call ourselves) and have since found quite a few other precocious people out there, some in their early twenties.

A sense of humor is a requirement when you have Parkinson's. Not only is it a good idea to be able to laugh at your predicament, but laughter helps your brain produce more dopamine, which is the "stuff" we are lacking and causes all of our weird symptoms. 

I was never, what I would call, normal. I was always small for my age, and a couple years ahead of the rest of the class in school. 

My Mother used to say I had "an old soul". Maybe it's that "old soul" that got the Parkinson's.  

Darn! Maybe I am not special after all.


Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!