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Sunday, November 30, 2014

Thanksgiving...Sleeping In and Eating Way Too Much

When I woke up Thanksgiving morning, at 8 am, I asked my Wonderful Husband to name five things he was thankful for. I had already been thinking of my five before I'd gone to sleep the night before.

YumaBev's list: 
1. I am thankful for my Wonderful Husband. He is my best friend and I cannot imagine life without him.
2. I am thankful for my step-daughter and Grandson. They live 3000 miles away, but we still keep in touch.
3. I am thankful for my neighbors. We spend a lot of time together socially and they accept me just the way I am.
4. I am thankful for all my Twitter and Facebook friends and for all the friendly people I've met over the years.
5. I am thankful that I found good Doctors, who genuinely seem to care about me.

My Wonderful Husband's list:
1. He was thankful that, as of my last mammogram in September, my breast cancer had not returned.
2. He was thankful that, after a very rough year of multiple scalp surgeries, my head healed and the DBS was doing it's job.
3. He was thankful that I found a Doctor who knew my DBS settings could cause depression and how to fix it.
4. He was thankful that it seemed like my Parkinson's had not progressed.
5. He was thankful that his daughter and Grandson were doing well and that we had lots of nice friends.

I was surprised that my health was such a concern, but then again, I shouldn't have been. I remember when HE had some health issues, it was ALL I could think about and I was very thankful when he got well. I will let you in on a secret; every time I wish on a falling star or when we pull apart the wishbone from a turkey or chicken, I always make the same wish. That we both will stay happy and healthy for many years to come.

As I went for my morning walk, I could smell turkeys roasting and pies baking all over our neighborhood. By the time I got back home, I was starving, but since dinner wasn't until 3 pm, I tried to hold off having my breakfast. This lasted until Wonderful Hubby decided to make eggs for his breakfast. The smell wafted back to the computer room, so I sat with him and ate my cereal (he'd have made eggs for me, too, but I prefer cereal.)

Around 2 pm, we walked over to our neighbors, George & Freida's for a traditional Thanksgiving dinner. There was turkey, ham, mashed potatoes, sweet potatoes, stuffing, corn pudding, cranberry sauce, broccoli salad, rolls and two kinds of homemade pie. It was enough food to feed a dozen or more people and yet, there were only five of us. Another neighbor, Carol, joined us. We all have family, but none are nearby, so we usually spend the Holidays with each other. Needless to say, there were plenty leftovers to take home. 



It was a very nice day and I was thankful we got to spend it with very good friends. Two days later, on Saturday, we were invited to a second Thanksgiving dinner with some other neighbors, Norm & Alayne and their cousins. Once again, there was way more food than nine of us could eat, but we had a great time, lots of laughs and enjoyed meeting some new friends.

I hope everyone had a thankful Thanksgiving and spent it with friends, like we did, or with family.

Monday, October 20, 2014

Let's Talk About Parkinson's Medications


October is "Talk About Your Medicines" month and I was asked to write a blog about my experience with Parkinson's medicines, so here it is.

Since my DBS surgeryI take a lot less Parkinson's disease medications, but I still have people asking me questions about side effects, drug interactions and what particular meds I take or took. Everyone reacts differently, so only you and your Neurologist can figure out what works best for you. 

I am not a Pharmacist or a Doctor, I am just YumaBev, the Happy Parkie, so I will share only my personal experiences. You should ALWAYS consult your own Neurologist or Pharmacist regarding medication dosages and side effects. 

That being said, here are some useful tips I've learned over the years:

1. Use the alarms feature on your watch or cell phone as a reminder to take your meds. In my warped sense of humor, my "drug alarm" ringtone is the song, I Want a New Drug by Huey Lewis. 

2. Never start a new medication (or increase the dosage) on a Thursday or Friday, because if you have a bad reaction over the weekend, you won't be able to get in touch with your Neurologist before Monday.

3. Some side effects, like nausea or sudden sleepiness, may go away within a month or two.
Other side effects, like dyskenisia, edema (swelling of legs, ankles or feet), cognitive problems (some have referred to this as brain fog), insomnia or obsessive or compulsive disorders may take a while to show up or become worse with age or the longer you take a medicine.

4. Ask your Neurologist exactly what times you should take your meds and what other things, including over-the-counter medications, supplements or foods such as proteins, aged cheeses, alcohol, caffeine, etc. you should avoid. Also ask what kinds of over-the-counter cold medications or pain relievers are safe to use. 

5. Make sure your Doctors know EVERY medication you take, including supplements and over the counter meds. Don't lie about how much alcohol you drink or how many pain meds you take. A friend nearly died because he lied to a Doctor about how much prescription pain medication he was taking prior to an outpatient procedure and he had a severe reaction when they gave him anesthesia. If you use cannabis, make sure your Neurologist knows this, too.

6. If you need to be hospitalized, ask the admitting physician to put in writing that you may take your OWN Parkinson's medications while hospitalized. If you can't do this, make sure YOU know exactly WHAT you take and WHEN you take it and tell EVERY medical person you encounter that you NEED your Parkie meds on time. Check with the nurse to make sure they are giving you the CORRECT medication and dosage EACH time. Do not let them substitute unless your Neurologist okays the change. A lot of neurologists won't have hospital privileges, so be careful. 

7. If a medication begins to make you feel worse or the side effects become unbearable, tell your Neurologist as soon as possible. Don't stop taking meds cold turkey, unless you are advised to do so by your Neurologist. Many Parkie meds require weaning off.

8. Some Parkinson's medications (or the disease itself) MAY increase your risk for certain cancers, including melanoma skin cancer, breast cancer (men can get it, too) and prostate cancer, so have regular screenings.

Okay, now here's my medication story. Keep in mind that my reactions to various medications may not happen to you.

Back in 2004, a Neurologist thought I had Essential Tremor, so the very first medication I was ever given was a beta blocker called propranolol. It is used to treat high blood pressure and irregular heartbeats as well as prevent migraines and chest pain (angina). It can also help reduce tremors. It worked fairly well at controlling the action tremor in my right hand, but didn't help anything else. My normal blood pressure is low, and the medicine slowed my heartbeat so much that, over the years, I became winded just walking to our car. The dose was lowered and I could walk without wheezing like a 98-year old man, but the tremors returned. 

In 2007, a different Neurologist figured out I had Parkinson's and I was given carbi/levodopa 25/250 and told to stop the propranolol, unless my tremors got worse. They didn't. I was told to take 1/2 a pill three times a day, so I took them at 8 hour intervals and on an empty stomach. Nausea was an early side effect, mostly when I took my first pill of the day. I found, by accident, that if I took my pills with lemonade instead of water, the nausea disappeared. Then we adjusting the times I took my pills and found, for me, taking them at 8 am, 2 pm and 8 pm worked better at controlling my symptoms and made scheduling meal times a lot easier for my Wonderful Husband. Later on, the nausea disappeared completely. After approximately three months, I began waking very early. The nights of only 4-5 hours of sleep continued until after I had the DBS surgery. 

After about 6 months, my Neurologist tried prescribing Stalevo 100, which is a combination of carbi/levodopa and entacapone. I didn't see any difference and I had the unpleasant side effect of a burning sensation when urinating and my urine was dark yellow, so we went back to the plain carbi/levodopa.
   
Later, he added pramipexole which is a dopamine agonist and I started with the 0.125 mg dose, three times a day. When he upped the dose to 0.25, I made the mistake of starting it on a Thursday. By early Saturday morning, I felt like I had taken a bottle of No-Doze followed with a pot of coffee. My heart was racing and we ended up driving to the local fire station, waking up the EMT who was on duty and having him check my blood pressure. It was sky high as was my heart rate. Needless to say, I stopped taking it and called my Neuro first thing Monday morning. 

I went back on the 0.125 dose and after a few weeks, the sleep attacks began. All of a sudden, I just had to go to sleep. I just could not stay awake. I once fell asleep while eating lunch. Fortunately, that side effect went away and I stayed on the 0.125 mg dose for a couple of years.

Later, I went back on the Stalevo 100, and got used to the burning sensation when urinating, and after a while, I started taking Stalevo 150, still three a day. Later, we tried Stalevo 200, but the dyskenisia was terrible, so we went back to the 150's. We tried the 150's four times a day, but that was too much also. 

Since I couldn't tolerate higher doses of pramipexole, we tried a different agonist, ropinirole. He started me out on a low dose, 1 mg, three times a day and all seemed to be fine. No racing heart and my blood pressure was normal. A few months later, I began spending hours and hours online, mostly in a Parkinson's chat room. This was also the time when I started this blog. I was glued to my computer screen all day and half the night. I had to be dragged away to eat. The worst part was I didn't even realize that I had become obsessed with all things Parkinson's. The only good thing about my obsession, is this blog and the creative song parodies I wrote while on ropinirole. 

Later on, my "off" times were increasing, so he upped the dose of ropinirole to 1.25 mg, still three times a day. All was good for a few months, then my ankles started swelling and the olfactory hallucinations started, so back down to the 1 mg we went. 

As a last result, he prescribed Stalevo 100's five times a day (a lower dose, but more often). My symptoms were better controlled and all was well for a month or so, then my cognitive functions started diminishing. Within a few months, I couldn't even answer simple questions because by the time my muddled brain could formulate an answer, I'd have forgotten the question. This was a very scary time for both myself and my Wonderful Husband. Why the extra doses caused problems is unknown as I had been taking 3 a day for years with no problems, but my Neurologist has had several patients who had the same complaint. 

Finally I'd had enough, I went back on plain carbi/levodopa 25/100's five or six times a day, and told my Neuro maybe it was time to consider DBS. After about two months, most of my "brain fog" was gone and I was able to pass the neuro-psychological testing with flying colors. 

During my overnight hospital stay for my DBS surgery, a nurse tried to give me the wrong medicine, he tried to give me 1 mg of pramipexole instead of ropinirole. Since 0.25 mg had sent my heart rate and blood pressure through the roof, can you imagine what FOUR times that amount would have done? And they had just drilled holes in my head! Their pharmacist had it listed as an equivalent substitute. Before I left, another nurse tried to give me the wrong dose of ropinirole, but I caught that mistake as well and refused to take it. So, you need to know EXACTLY what you take.

Since DBS, I no longer take the agonist ropinirole and I doubt I will ever take it or any other agonist again. I just take plain old carbi/levodopa 25/100 as needed, which is usually half a pill 2 or 3 times a day.

Just because I had the above listed side effects, doesn't mean you will. You should be aware of all the potentially serious side effects of ANY medications, not just Parkie meds






Saturday, October 18, 2014

DBS: Two Years Ago, I Let Them Drill Holes in my Head

Today is October 18, 2014. Two years ago, I was lying in a hospital bed with a headache. My hair was matted with a combination of surgical disinfectant and blood and I was hooked up to so many monitoring wires, I felt like NASA should be in control.


YumaBev Oct 18, 1012

Dr. Norton had just finished drilling holes in my head and inserting the DBS stems for Part One of my DBS surgery. My Wonderful Husband looked relieved; it had been a nerve wracking wait for him. I was hungry, but my stomach was upset, probably a side effect of the anesthesia. I vaguely remember the nurse bringing me some crackers. 

I remember calling Jim Adams and telling him to go ahead and post on Facebook and Twitter that all had gone well. 

Well, here it is, two years later and what are my results now?

I haven't had a foot cramp since right before the surgery two years ago. I take much less Parkinson's medications and the medication related dyskenisia is gone. I sleep a lot longer. My tremors, what little I had, are pretty much gone. The same can be said about the slowness of movement. If I sit for too long, the rigidity comes back, but quickly disappears. In other words, all that was promised by Medtronic has happened.

Fatigue is a major problem and can come on quite suddenly. My speech has been adversely affected, both in volume and clarity. However, I seem to have no problems when I use a microphone, such as when speaking at our local Parkinson's support group. My upper lip still curls into an ugly sneer.

I have noticed that my balance isn't what it used to be. I do okay walking forward, but climbing steps or bending to pick items up can be a little scary and I often have trouble maintaining my balance when I get up from sitting. We have rearranged the bedroom, so that I have something to grab onto when I get out of bed.

My handwriting has gotten much worse, I can't write anything readable. This makes me frustrated, because I can't even make out a grocery list.
Handwriting before DBS
Handwriting after DBS

I am still having some time and memory problems and get easily distracted. I like to laugh and joke and sometimes I come up with a funny story idea for this blog, but by the time I get to the computer, it is gone. I don't spend as much time online anymore. If I sit at the computer too long, it aggravates a neck/shoulder problem from the cancer surgery. On a positive note, my second, post breast cancer mammogram came back negative, so that's good news! 

I am looking forward to speaking to the Medical School students next month and hope to have more chances to speak to people with Parkinson's as well as educating others about this disease. I'm looking forward to friends and neighbors returning to Yuma for the Winter. Have a Happy Parkie Day! 


Thursday, July 17, 2014

Parkinson's Humor: Three Years Later

July 17, 2011 was the date I started this Parkinson's Humor blog. Those three years have flown by. I am still amazed that people read my stories and even more amazed they come from all over the world.  

The red dots represent where my readers live

I am still friends with the first people I met in a Parkinson's Chat Room (see Chat Room link on left sidebar.)  Karyn from Australia, who convinced me to start this blog and helped me decide DBS surgery was right for me. Steve and Linda from Kentucky, who headed up the chat room and Andrew from Australia who still has his pet snake named Pelorus. But, I have only met one of them in person; Mary L from Mississippi, who
YumaBev and Mary L in New Orleans, LA
arranged for me to be the guest speaker at a Parkinson's disease conference in New Orleans in April 2013. I've met several other Parkies that I have interacted with online at conferences in Southern California and Phoenix.  

YumaBev and Kip from Nevada

YumaBev and Michelle from Louisiana

Mick from Arizona and YumaBev

YumaBev and Roy from Florida

Davis Phinney and YumaBev
YumaBev & Laurie from Canada

Some things have NOT changed. My hair style is still the same except for some "wings" trying to grow out
YumaBev's wings

from the DBS surgery. I still use the same ancient desktop computer, which I hope lasts forever. My mouth still hangs open when I watch TV. I still wear Velcro sneakers. I still like to laugh and make others laugh. My Wonderful Husband is still wonderful.  

And some things have changed. My right foot no longer dances under the desk when I am trying to write.  I sleep later, have missed many sunrises and I've gained a few pounds. I walk more normally. My singing voice has gotten worse (I know, it's hard to believe, but it's true.) My voice has gotten quieter (I know, hard to believe, right?) and some times my speech isn't very clear, but I keep right on speaking. In fact, I've been invited back to speak to Dr Sherman's first year medical school students in November.


All in all, I'd say I am doing very well. I am looking forward to the next 3 years and hope to meet many more of you in person.


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

Thursday, July 10, 2014

Knowledge is Power with Parkinson's Disease

Today, July 10, 2014 marks the 11th anniversary of my Father's death. Even though he didn't die of Parkinson's disease, it was a huge contributing factor. 

Back then, I didn't understand when the staff at the hospital said, "Parkinson's makes everything worse." I didn't understand that his dementia may have been caused by the many different medications he was taking. I didn't understand why he seemed to have lost his sense of humor. Why he no longer made witty, sarcastic quips. Why he no longer laughed like he used to. 

I didn't understand why it was painful for him to put his arms behind his back to put on a jacket or raise his arms above his head to take a tee shirt off. I didn't understand why he would just sit and stare off into space when he used to love to play golf or read books or go to shows and plays. I didn't understand why his nose would run or why he'd sometimes drool on himself and not seem to even realize it. I didn't understand how he could fall just by turning around in the kitchen. I DO NOW.

Back then, I didn't understand a lot of things because I didn't know much about Parkinson's. I only knew that people with Parkinson's had shaky hands. That was it. I knew nothing about the rigidity, slowness, cognitive problems, facial masking or balance issues. I was totally clueless

Heck, I didn't even realize, way back then, that I already had Parkinson's disease myself, for at least 5 years. I remember asking my Father's neurologist, if maybe my problem with my right hand was Parkinson's and his reply, "Don't waste my time, your problem is orthopedic not neurological." He was totally wrong and it makes me wonder, just how much about Parkinson's HE knew? 

The point of this story is knowledge is power. As a Parkie or their care-partners, you need to learn about this disease. You need to know that Parkinson's will even make getting over a cold take longer. You need to know that the medications we take can have serious side effects and that other medications can interact with them as well. You need to keep learning and fighting and laughing and forcing yourself to keep moving and interacting with others. If you don't, then Parkinson's will win.

I miss both my parents every day, and I have photos of them on my walls. When I look at their smiling faces, I remember the good times. I will not give up, I will not give in, I will not hide in the dark. If I can still do it after having this damn disease for more than 15 years, you can to. 


YumaBev's Mom and Dad


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

Tuesday, May 6, 2014

May Flowers

There's an old saying: 
April showers bring May flowers. 

We seldom get ANY rain in Yuma, Arizona, and this year we got none in April but we still have the May flowers.

I, however, grew none of them. While my Mom had a green thumb, mine is brown. I can even kill fake plants. Many of my neighbors do have green thumbs and since most of them have already left to go back North for the summer, I get to enjoy the fruit of their labor on my morning walks. It's a shame they do all the work and never get to see the blossoms.

All of these beautiful cacti have bloomed in the last few days. The flowers open very early in the morning and by mid-afternoon, they are already dying. The flowers are huge, but only last one day. Some will bloom again in the next month or so, others won't bloom again until next year. If I didn't walk every morning, I would miss seeing them. 








This is the Sleeping Cactus from a couple years back. It sure has grown and to think the nursery was going to throw it in the trash.




This is the cactus that my photo won a Facebook Contest and was featured in the University of Arizona's Co-op Extension brochure a few years ago.


I have to be very careful when I take these photos, because one false step and I'd end up with prickly needles stuck in me. OUCH!



Today, on my walk, I noticed a different kind of tree, one that perhaps, even I could grow myself. It's a bottle tree...



Have a Happy Parkie Day!  

PS:
As luck would have it, the neighbor with the bottle tree left a few days ago. As he was leaving, I jokingly said, "I'll keep an eye on your bottle tree while you are gone." We both laughed and he headed north for the summer.

Well, guess what? I walked past his place today on my morning walk and this is what I saw:



Yup, all the bottles were gone off his tree! 

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

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.



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