My Fancy Phone Fiasco

Most of my friends, neighbors and even fellow Parkies (people with Parkinson's disease) have new cell phones. They have iPhones or Galaxy phones or some other newfangled Android phones with touch screens and speech features. All they have to do is say, "Call Bev" or "What's the weather in Kalamazoo" and the phone does just that. It calls me or tells them the current temperature back home in Michigan. They can even play humorous videos and games on their phones.

Some of my neighbors fancy phones

I have an older Smart phone. It's the kind that still has a qwerty keyboard, albeit a small one. I can make phone calls with it, type texts with it, take pictures with the camera, use the navigation feature and check my email, Facebook and Twitter accounts. I can even look things up on Google search. When it rings, it tells me who is calling if I have them in my contact list. It mispronounces very simple names, like Lisa and Home (it says Liza and Hum,) but gets the complicated names right for the most part (Dermatologist or Neurosciences.) The one thing it doesn't have is speech. I have to type everything in on that tiny keyboard. 

My old Smart phone

Well, a few months back, my phone started acting up. Calls were being dropped. The battery didn't seem to be holding a charge. It looked like I'd need a new phone. I, unlike most people, hate new electronic gadgets. I still use a desktop computer with XP from 2004. I like the older versions of software that came with it so, I refuse the software upgrades whenever they pop up. I like my ancient non-usb keyboard (you really have to press on the keys to type.)

So, I went phone shopping. After looking at what was available at the local stores, I decided to order my new phone online. Why? Because I'd have 30 days to try it if I purchased online and only 15 days if I bought it at the store (does this make any sense to anyone?) 

My new Android phone came within 3 days and my first job was to figure out how to get all the phone numbers in the contacts transferred to the new phone. It was easy; I called my Step-daughter and she talked me step by step through something called Bluetooth (and I thought Bluetooth was only for in the car.) Then I had to figure out HOW to use the phone to make calls. I tried the "Call David" feature, but the voice recognition didn't understand my Parkie speech. So, I had to find the number keys. There aren't any, you just touch the numbers on the screen. This was a disaster as I would invariably either not touch hard enough or my Parkie fingers would stutter and I'd end up typing two or three number 9's.

When my new phone rang, it just whistled. I tried to find a setting where it would tell me who was calling, but could not. I also couldn't find a ring tone that actually rang, like an old fashioned phone. I know I'm weird, but when my phone rings, I know it's MY phone.

I was missing my old phone and it was just the first day. Then I got my first incoming text message. I tried to reply using speech, but the words it kept typing were not the words I was speaking. So, I had to try to correct it using the touch screen alphabet. I couldn't find the backspace, and my stupid fingers didn't do any better at this than they did typing numbers.

I tried the "What's the weather in Yuma?" and got a Yo Mama YouTube video. Then I tried to send a new text to a friend at 11 pm local time and ended up calling someone in Florida where it was 2 am. I never could get my Twitter or Facebook page on the new phone and email was problematic, too. I was really missing my old phone. 

A neighbor suggested I try a stylus, a pen type instrument designed for touching touch screens. I bought one, but still had the same problem; I'd either not touch hard enough or I'd double touch. Argh! I'd had enough! I wanted my old phone back.

Stylus for phone

I called my cell phone provider and told them I wanted to re-activate my old phone. No problem. They would turn my new phone off and the old one would be back on in a few hours. Well, 12 hours went by and no phone, then 24 hours. I borrowed a neighbors phone to call them back. Oops, it turns out I'd need a new SIM card in my old phone in order to reactivate it. They turned the new phone back on and mailed me a SIM card; only it was the wrong card. More phone calls, more wrong SIM cards mailed. Finally, they sent the right SIM card and with two days of my 30 trial days left, I finally got my old phone working again. I hastily packed up and mailed the Android phone back.

The funny thing is, now that I happily have my old phone back, calls are not being dropped and my battery is lasting just as long as it always did. Maybe it just needed a break or maybe it just wanted to be appreciated (just like the rest of us.)

Parky Proof Packaging

Vise grips

I have been fighting with Kellogg's for almost ten years and I finally won the fight. In the last year of my Dad's life (he also had Parkinson's), I watched him struggle trying to open food packaging and for the last six years, I have had the same struggle myself. The Hunt's pudding cups were the worst, Dad finally resorted to using vise grips (YES, vise grips) to pull the tamper-resistant seal off the plastic containers. I wrote to them several times, complaining about how ridiculously hard they were to open. The response was always the same, "Thank you for your comments, we will forward them on to our product division." Then they would send coupons, so of course, Dad would buy that brand, again, and the fight would continue. 

It was the same with Kellogg's cereal. The plastic bags inside were nearly impossible to pull apart, unless you had Hulk Hogan strength. So, once again I wrote and complained and their response was similar to Hunt's. Well, after Dad died, I gave up the fight with Hunt's. I'm not a pudding fan and if I want some, I will buy another brand, one that IS easy to open. 

Kellogg's was different, though. I like cereal, and Kellogg's is my favorite. Granted, they have made me mad enough over the years, that I purchased other brands, but, just like my Dad, I wandered back to Kellogg's and cursed every time I had to open a new box. So, I kept on writing and complaining, and they kept on saying they would forward my comments on. 

My cereal cabinet

Well, apparently, someone actually read my letters, because this is what greeted me when I purchased my most recent batch of cereal. 

YES, it said Easy Open Bag, in bold print, right on the top of the box. I was thrilled. I couldn't wait to try it, and guess what, it WAS easy to open. Yeah, I won! 

My enthusiasm was short lived, however, when I needed to open a new bottle of Stalevo. I have been fighting this problem for years, so today, I decided to video tape just how difficult it is to open this Parkinson's medicine. Click > to play video.

One Parky friend got so aggravated trying to open a bottle of pills, she hit it with a sledge hammer. Maybe I could use a saw? Or run over it with the car? 

Guess I better write another letter .........

You can find all my videos on my YouTube channel:

https://www.youtube.com/user/ParkinsonsHumor

But You Don't Shake

But you don't shake. I HATE those four words and every time I hear them, I want to scream! 

And I hear them often, from strangers, from cashiers, from salesmen, I have even heard it from Doctor's, Nurses and Pharmacists. They always come right after I say "I have Parkinson's Disease". 

My Wonderful Husband and I drove 200 miles to San Diego to attend a Parkinson's Seminar hosted by UCSD and the Parkinson's Association of San Diego. My built in GPS failed me, or I just couldn't remember what I saw on the map, I'm not sure which, but I took the wrong exit and got lost. I quickly realized my mistake and after several U-turns, found the signs and made it to the program, 20 minutes late. We signed in and found seats.

During the break, I met Karen & Sue, people I've met online through Twitter. I'm not sure which of us was more excited to meet the other, I guess it was a tie, but either way, I was glad to meet them in person.

I wandered around and introduced myself to some of the folks who were attending the seminar, told them about this blog and gave them refrigerator magnets with the Parkinson's Humor web address on it. I even told a funny story or two.

And then it happened, those four words "but you don't shake". I didn't scream, I didn't even get mad. I just said "You're right, I don't". I explained that tremors have always been the least of my problems and are controlled fairly well by medications. He asked "How long have you had PD?", I said 12 years. Wow, he said, how do you manage your symptoms so well? I explained about  Charting my symptoms and a great relationship with my Neurologist. A few others nearby, heard our conversation, and asked me about charting. I explained it, told them I had written a story about it and gave them magnets with the Parkinson's Humor web address and told them how to find the story on my blog. 

The seminar was very informative and afterwards I handed out a few more magnets and told a few people about my Parkinson's songs.  I got to talk to several of the Doctor's who spoke at the seminar. The best part? None of the Doctors said "but you don't shake" when I told them I have Parkinson's. That gives them an A+ in my book.

Clicking on colored words in a story will open a new window and take you to the appropriate 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 or your favorite online book seller. Thank you and have a Happy Parkie Day!

What a Cat Taught a Parky

Cat's Twitter page

Cat is my blind friend that I met through Twitter.  She uses a screen reader software designed for the blind to "read" what is on her screen. Twitter is her main connection to the outside and she "talks" to people around the world. She is curious, smart, sympathetic, and fun, plus she has a great sense of humor.  She willingly answers questions like "How do blind people ...?" as long as they don't get obscene.  And she likes to help people as well.  When she saw a post about how my fingers stutter when I type, she came up with some great suggestions for Parkinson's Disease people who have trouble typing. 


The first one is called Filter Keys and it is a keyboard setting that basically ignores bouncing (trembling) fingers. The second one is called Sticky Keys and it allows us to hit one key at a time. The third one is a dictation setting so your computer will type what you speak.  I never knew these settings existed, but apparently they teach blind people about them, and she told me!  


Here is how to find them if you use Windows XP or 7.


Filter keys in XP.  Control Panel, Accessibility Options, Accessibility Options again, mark the Use Filter Keys box, then click Settings, you have 2 options: Ignore repeated keystrokes or Ignore quick keystrokes and slow down the repeat rate.  The first one is better if your fingers tend to type the same letter more than once, you can set the length of time for extra strokes to be ignored and there is a test area to try it out before OK-ing the settings.  The second one would be better if your fingers tend to hit multiple keys at once and it also has various settings and a test area.  
Sticky keys is useful if you have trouble holding more than 1 key down at a time, like Shift and a letter (or Ctrl-Alt-Delete).  It lets you hit them in sequence one at a time.
You can also find settings to adjust the size of the type on screen and configure your mouse for left hand and single click instead of double click.


Windows 7, Control Panel, Ease of Access, Change how your keyboard works, Turn on Filter keys (or Sticky keys) and the settings follow.  Mouse adjustments in there, too.  And 7 has speech recognition, so you can set it up to type what you speak (built in dictation). 

Flipped up rug

Cat also suggested that you look around your home and think what you would change if you were expecting a blind visitor. What's laying around that she might trip over, stumble into or bump her head on.  All the things that can hurt her can also hurt a wobbly Parkie and falls can be devastating to all of us.

Cord to trip on

Everyone should have a Cat for a friend, I'm glad I do.  Find her on Twitter, she is @song_bird1987.
Other stories about Cat:
How to explain Parkinson's to a Cat
How do I describe a Fox to a Cat

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!

Shake, shake, shake - Parkinson's Disease Tremors

I remember seeing a group of men with musical instruments at a Bluegrass Festival about 20 years ago.  This one man's hands were shaking terribly, so badly, I was afraid he wouldn't be able to pick up his squeeze-box (a small accordion type instrument) that sat next to his chair.  I was right.  The fellow next to him picked it up and placed the strap around his neck.  The music started and this man carefully and with much difficulty placed his hands on it and began to play.  As soon as he grasped it, the shaking stopped and he played flawlessly.   It was incredible to watch and the group got a standing ovation when they were done, but as soon as he quit playing, the horrid shakes were back and the man next to him, helped him put the instrument away.  

Playing squeeze box

I knew the gentleman had Parkinson's Disease, I'd seen shaking hands before.  I went up to him and praised his playing.  He told me he was only 86 and had been playing since he was a child.  Neither of us mentioned the shaking hands.

This is the most common and easily recognized symptom of Parkinson's.  Tremors.  Almost all of us Parkies have them at some time or the other.  They come in two flavors, resting and action.  I've had both.  The gentleman above had the more common type, resting.
   
I started out with the action type, my right hand was fine, until I tried to use it, then it would shake uncontrollably, which made it very difficult to write, drink and eat.  I was forever picking up food off the floor and spilling my drink.  I started using my left hand and soon became so proficient that people thought I was a true lefty.  However, I never mastered writing left handed, so I gave up writing.  My Wonderful Husband took over the writing jobs, checks, grocery lists and even Christmas cards. 

My writing before:

You can click on picture to enlarge it, click the X to return

And after:

Quite a difference, right?

However, these tremors are not always a bad thing.  If I could time them to music, I bet I'd be a heck of a tambourine player and if James Bond stops by, I can make him a martini, shaken not stirred.

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!

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!