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Thursday, April 3, 2014

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.)

Thursday, March 27, 2014

Mission Accomplished

Back in September of 2011, my Wonderful Husband and I took a car trip to see the Fall colors in Colorado. We both took a lot of pictures and had a very enjoyable time. One of the pictures my Wonderful Husband took was of a church. It was sitting back off the main highway, probably a quarter mile away. There were dark evergreen trees and the mountain in the background and a row of bright yellow aspens just behind the white church. The meadow that was between us and the church was filled with native plants in various shades of orange, red and yellow. It was a beautiful scene. It wasn't until we got back to Arizona and were looking at our photos on the computer that we could see the name of the church: Holy Family Mission. An internet search revealed that this Catholic church had been built in the early 1940's.

At a later date, probably in early 2012, I posted the photo on my Facebook page. It was seen by Richard
"Ricketysticks" McWilliams, who also has Parkinson's disease. He asked permission to use my Wonderful Husband's picture because he wanted to paint this church. I had seen some of Richard's paintings online and I was very impressed. Besides painting, Richard makes canes from tree branches and then gives them away to people who can't afford them, hence the "Ricketysticks" nickname. He's made over 4000 canes in the last 45 years! My Wonderful Husband said yes and we emailed Richard a bigger file size of the photo so he would be able to see the detail better.

Fast forward to 2014. I knew the painting was finished because Richard had sent me a photo of it. Then I got a message from Richard that a neighbor of his was coming to Yuma (Richard lives in N. California) and the painting was in the man's truck. Well, a few days later, Richard's neighbor, Jason, called and said he was in Yuma. We made arrangements to meet and he gave me the Mission painting!!  I sent an autographed copy of my Parkinson's Humor book and a CD of my silly song parodies back with Jason (not nearly an equal trade, but it was all I had.)

YumaBev with the 2 Mission pictures

Here is a picture of me holding Richard's painting with the photo in the background. I'd call it Mission Accomplished.

Monday, February 17, 2014

Feeling Hot, Hot, Hot

One of the latest non-motor symptoms of Parkinson's disease I have been experiencing are hot flashes. They start with my face or neck and spread downward. Thankfully, they only last a minute or two, so I don't end up drenched in sweat like some other Parkies I know. When I am with friends and take my jacket off, then put it back on again, then take it off, and put it on again (sometimes within twenty minutes and when the temperature is actually cold), I use my sense of humor and just say, "Guess I'm still a Hot Mama!"

YumaBev as a Hot Mama

I have them multiple times during the day, but I always having one as soon as I lie down to go to sleep. It doesn't matter whether I am taking a nap or going to sleep for the night. Within two minutes of becoming prone, the heat starts.

These night time hot flashes are irritating. I kick off the covers, then become chilled, so I pull the covers back up, then I get hot again, then chilled and finally go to sleep. If I get up in the night to go to the bathroom, as soon as I lie down again, another one happens. Hot, cold, hot, cold. It's a wonder I get any sleep at all (and I feel sorry for my Wonderful Husband who sleeps next to me.)

The autonomic nervous system (ANS) regulates the functions of our internal organs and controls such things as heart rate, digestion, breathing, salivation, urination, blood pressure, sexual arousal and perspiration. Parkinson's and lack of dopamine affects our ANS and is probably what screws up our internal temperature gauges.

Females have similar hot flashes during menopause, but I went through that several years ago. In my research for this story, I had one gentleman tell me he was going through "MAN-opause," and another fellow wondered why he never gets hot flashes when he's outside shoveling snow and could use the extra warmth?

What can be done about it? Not much, apparently, so I just adapt and try to laugh about it.

Monday, January 27, 2014

The Importance of PROPER DBS Programming

The one year anniversary of my DBS surgery came and went without any fanfare. There was no celebrating, no party, nothing. Why? Because I felt awful. I was having mood swings, I was sleeping way too much, I was grumpy and I was depressed. It seemed like all the humor was gone. This had been going on for months and was getting worse. My motor symptoms (tremor, rigidity, slowness) were okay, but I was miserable. I was convinced the surgery or the DBS settings were to blame. I even found myself having suicidal thoughts, but figured I'd screw up and make myself worse. I was beginning to regret having the surgery.

Then, I got an email from another lady with Parkinson's disease who also had the DBS surgery and she was experiencing similar personality changes. So, I went on some DBS Facebook groups that I belong to and asked if anyone had heard of the DBS settings causing depression in people who didn't have it prior. The answer was a resounding YES. My friend Gretchen called me and said I needed to find a good programmer immediately. She even suggested flying to Florida to see her programmer, but I thought I should be able to find someone closer.

Okay, now what do I do? I made an emergency appointment with a neurologist who could adjust my DBS settings, but he said he didn't think my depression was DBS related and suggested a psychiatrist and antidepressants. I tried a couple antidepressants, but they made me feel worse. 

In desperation, I called all the medical people I knew in Tucson, Arizona and the same name kept coming up: Dr. Scott Sherman. Well, it turns out that I was already scheduled to speak to a class of Dr. Sherman's first year medical students at the University of Arizona Medical School about my life with Parkinson's disease. So, I contacted the person who had arranged the speaking engagement and asked him if he would tell Dr. Sherman about my problem and ask if he could see me as a patient.

Dr. Sherman said yes. He actually called me himself and made an appointment for me the same day that I would be speaking to his students. Well, he moved my settings up to a different spot on the stems in my brain and within a few days, the difference was amazing. I had more energy, I felt more sociable, and the depression was gone. My gait was almost normal, the morning tremor in my right hand was gone and the rigidity and slowness I'd get every afternoon was also gone. I still have some speech issues; I drop consonants or speak too softly or quickly, but maybe this can also be fixed with some program tweaking.

Dr Scott Sherman and YumaBev

DBS can be wonderful for people with Parkinson's and I now realize that finding someone who can properly program the unit is just as important (or maybe more important) as finding a great surgeon to implant it. It was a 250+ mile drive each way to find my perfect programmer, but it was well worth it.

Monday, January 20, 2014

Apathy and Parkinson's Disease

Definition of Apathy: 
   1. Lack of passion, emotion, excitement
   2. Lack of interest, a state of indifference
   3. Lack of motivation

Apathy can be a major non-motor symptom of Parkinson's disease. Combine it with fatigue, another major non-motor symptom, and it's no wonder we Parkies can be seen as lazy, disinterested or uncaring by friends, family and even strangers. 

What causes apathy in people with Parkinson's? It is believed to be due to chemical changes in the basal ganglia part of the brain. Dopamine is not only the primary neurotransmitter for motor control and movement, but it is also necessary for goal-oriented behavior, enjoyment and motivation. In other words, dopamine is our "feel good" chemical and as the dopamine levels in our brain get less and less, we no longer enjoy the things we used to and we become more apathetic. It's not that we don't care, it's that we can't care. Our dopamine deprived brains just don't work like they used to.

I am just as apathetic as the rest of you. I used to enjoy going to karaoke, but it's in the evening and by that time of day, I don't feel like going out. After dinner, it's easier to put on my pajamas and watch TV instead. I was never into card playing or crafts, and I'm not a reader, so I am bored, a lot. I have a problem with my neck/shoulder which is aggravated by computer use, so I don't even spend much time online. I'm not a cook and cleaning also aggravates my shoulder, so mostly, I do nothing (thank goodness my Wonderful Husband cooks and helps with the cleaning.) I have closets full of clothes I don't wear, so I can't even get interested in shopping. 

I did, however, start walking again. I walk alone in the mornings and with a neighbor in the afternoon. I used to enjoy talking on my walks, but now I mostly listen, as I have developed some speech problems and I can tell people have a hard time understanding me. 

About the only things I DO look forward to are social interactions with friends and neighbors. I usually don't say much (the speech thing), but I enjoy listening. I have always enjoyed being around people and I still do. Aside from that, there just isn't anything that interests me. I wish there was.

Wednesday, December 4, 2013

Walk Quietly and Carry a Big Stick

My Parkie friend Rick lives in northern Maine and makes walking sticks in his spare time. Last Spring, I traded him a copy of my Parkinson's Humor book for a walking stick. I didn't get to use it over the Summer. Since my DBS surgery, I sleep later and I have missed many sunrises. By the time I would get up, it was just too darn hot to walk.

However, now that the weather is cooler, I started walking again. Usually, I walk late in the afternoon, about 4:30 pm. My neighbor, Freida, walks with me. 

Sometimes I walk by myself, in the morning, and the one day I forgot to take the walking stick with me, I needed it. Not for walking, but to fight off a fierce dog that decided to chase me; barking and trying to bite me. So, I turned around and in my gruffest voice possible, I barked right back at it and then stomped my foot and finally, it decided to run off back home. Needless to say, I don't walk past that house anymore, but from now on, I always remember to carry my big stick.

Saturday, September 28, 2013

Parkinson's is a Little Disease

In my bio, I reference Parkinson's as a little disease and even though Parkinson's disease has a HUGE impact on the lives of those affected by it, it is, in many ways a "little" disease. Let me explain. 

Parkinson's disease is caused by the death of little neurons in the little kidney bean sized areas of our brains called the substantia nigra. Neurons are little, very little; it would take hundreds to form the period at the end of this sentence. 
See how little the area is?

With Parkinson's, you tend to get little. Your handwriting gets little, your steps get little, your movements get little and even your voice gets little.

You don't wake up one morning with full-blown Parkinson's disease; it sneaks up on you a little at a time. Michael J. Fox, probably the world's most famous Parkie, noticed that his little finger twitched a little, not a whole bunch, just a little.

Parkinson's makes it difficult to do little things, like button buttons, thread a needle or shave your underarms. 

If you ask the experts, and they give you an honest answer, they will say little is known about Parkinson's. I asked my primary care physician how much he learned about Parkinson's in medical school, and his answer was, "Very little."

Every EMT and paramedic knows the signs of Heart Attack and Stroke, but most know little or nothing about Parkinson's. Heck, even hospitals know so little about Parkinson's that the National Parkinson Foundation created an Aware in Care kit to educate them.

Holding my Aware in Care kit

When I went for the consultation for DBS surgery, the Doctor said, "We will drill two little holes in your head and insert little leads, which will be connected to a little generator."

When I started writing these little stories, I had no idea they would be read by so many people on this little old planet in the middle of a huge universe. So, I promise not to let this little disease take away my big sense of humor.

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

Friday, August 30, 2013

Time will Tell

Today, August 30, 2013 is the six year anniversary of my Parkinson's disease diagnosis. Many things have happened during that time; some good, some bad, and some I can't remember.

Time seems like it's flying by, and my concept of time has diminished. When my Doctors ask me questions like, "When did these symptom start?" or "How long ago was this test done?" I have no idea whether it was last month, or six months ago. I have to go home and look it up. I have a medical file on my PC, so the tests are easy to find. I have kept a daily journal, something I have done for years, so I can go back and see just when that particular symptom started. Without these, I'd be lost. 

It's not just medical things that I can't remember. I can't remember when I last saw friends or when I went to see a show and this concerns me. I'm sure my Parkinson's has progressed, even though my motor symptoms haven't; due to the Deep Brain Stimulation surgery I had done in October 2012. 

I have been through a lot this year; breast cancer surgery, three other surgeries, and way too much stress. Has this caused my "time" problems or is it something else?

I don't know, but maybe, come next August 30th, I won't remember any of 2013 and that might be a good thing. Time will tell...

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

Monday, August 12, 2013

The Good, the Bad, the Ugly and My Sequin Dress!

I never had any problems writing humor stories about my life with Parkinson's disease. I'm not sure why, but I think it's because I felt terrible prior to getting diagnosed and within a day or two of taking carbi/levodopa I felt a whole lot better, so sharing my happiness was easy.

Breast Cancer is different. I am having a hard time finding anything funny about it. Prior to my diagnosis, I felt fine. I didn't have any pain. Sure, I had the lump in my breast, but I assumed, like most of the Doctors who examined me, that it was scar tissue from a previous benign biopsy. It wasn't, of course, so like Paul Harvey would have said, "Here's the rest of the story."

May 7th, 2013 started way too early; we went to the hospital, where I got into the lovely surgical gown and way too big surgical socks. A nurse did the usual list of medications, allergies, weight, blood pressure, have you eaten, blah, blah, blah and then the fun began...

First, I went to radiology, where they injected radioactive stuff into my right breast. From there we went a few blocks away to another building where they put a locator wire and some blue dye in the same breast. A mammogram was done to make sure the wire was in the right spot and then it was back to the main hospital.

Next we were off to the obstetrics department where they normally deliver babies, I'm not quite sure why I went there instead of the main operating room, but I didn't ask. A nurse started an IV in my arm and within minutes, I complained that it felt strange, so she took it out. The anesthesiologist came in, said she'd do the IV in the surgery and off we rolled. 

The next thing I remember is waking up and feeling like I was in an oven. They had hot blankets piled on top of me, trying to stop what they thought was me shivering uncontrollably. I wasn't shivering at all. I was having internal tremors from being off my Parkinson's medicines and having my DBS unit turned off all day. They quickly removed the blankets, but I was over-heated and ended up getting sick to my stomach. Guess I have to add one more thing to my "hospital" list, or better yet, I think I'll just stay away from hospitals altogether. 

While I was still in recovery, I went to reach for something with my right hand and my arm wouldn't move at all, this was very bad. You should have seen the faces of the Doctors and Nurses, they went completely white. Fortunately, the feeling slowly returned and now, three months later, my right hand and arm are back to pre-surgery normal. What caused this, who knows? But it's another reason for me to stay away from hospitals.

We left the hospital that evening and came home a few days later. The Doctor called on Friday and said something like, "The margins were clean and so were the lymph nodes, so we think we got it all." This was very good news. 

The ugly bruise on my arm from the "strange feeling" IV is still visible months later, but the blacks and blues from the breast surgery disappeared within a month. How strange is that? By the way, I was showing off my newest sequin gown at a party for the APDA in Arizona just 10 days after surgery!

Ugly bruise is still visible months later

YumaBev in her newest sequin gown.

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

Friday, August 2, 2013

Saying Goodbye

My beloved Dr. Zonis is retiring and closing his practice. I am very happy for him and his beautiful wife Perla. They will have lots of free time; to travel and spend time with their family. He has been my "superhero" for almost six years and has been helping other patients for over 38 years, so he really deserves his retirement, but at the same time I am sad.

I will really miss both of them. He has been more than a Neurologist to me; I think of him more as a friend (even though I only saw him as a patient.) I gave him a big hug at my last appointment, as always, but I didn't know that might be the last time I would see him. And that makes me sad, too.

Bev and her beloved Dr Z

As a patient with Parkinson's disease, my choices for a new Neurologist aren't too difficult because there are Movement Disorder Specialists in Phoenix, Tucson or San Diego (3+ hour drive each way.) At least for now, I can drive to see one of them, however many others here in Yuma can't make that kind of a drive, so I have been calling other Doctors in Yuma (familiar with Parkinson's), trying to put together a list for those support group members.

I'm not sure how to say Goodbye to a couple like Dr Zonis, his wife Perla and his wonderful staff. I guess I really don't want to.

PS Dr. Zonis got bored being retired and re-opened his practice in January 2014.