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Thursday, August 30, 2012

Breakfast with Dr. Santiago

Dr Santiago with the Yuma Parkinson's Support Group
On Wednesday morning, August 29, 2012, about twenty of us from the Yuma Parkinson's Disease Support Group had a breakfast meeting with Dr. Santiago. He is a highly respected Movement Disorder Specialist (a doctor who specializes in Parkinson's), researcher and teacher, based out of the Barrow Institute at the Muhammad Ali Parkinson's Center in Phoenix, Arizona (one of the NPF's Centers of Excellence ) and well loved by his patients. 

As he talked, I realized why his patients love him. He is kind, compassionate, and has a sense of humor; joking about his height (or lack of) and his Sicilian ancestry. My Wonderful Husband is also Sicilian, so he scored a few extra points right then.
Dr. Santiago

I actually had an appointment with Dr. Santiago on January 6, 2012, but, unfortunately, my insurance coverage changed on January 1st and he was no longer on the "list" of Doctor's I could see, so I had to cancel the appointment. I guess the insurance companies know best (yes, I am being sarcastic).

I was quick enough with my camera to catch, in my opinion, the most important thing he said as he talked with us and here it is. (click > to play)

As he answered questions from our group about side effects, blood pressure and pain problems; I came to the realization that most of the doctors we see don't know much about Parkinson's disease, but many think they can adequately treat it and that can make our lives miserable. Even most general neurologists know very little about the complexities of Parkinson's. I guess that's why you hear the term "practice" when it comes to the medical profession.  

A woman, new to our group, was just told that she has Parkinson's disease by a primary care doctor assigned to her by the hospital where she was undergoing heart surgery. Yeah, that makes sense. Add a bunch of stress to someone who is in the hospital for heart problems. Dr. Santiago listened to her, hugged her and said "Get a second opinion from a Parkinson's specialist." He scored a bunch more points.

I am my own advocate. I learn all I can about my disease. I know when my medications are to blame for my symptoms and push my doctor to fix it, and not necessarily by adding even more medication. You need to be your own advocate, too. If you think a medication is causing problems, speak up, loudly. And if your Doctor doesn't listen to you, find another one. It's too bad we can't copy Dr. Santiago and give one to every Parkie who reads this, we'd all be Happy Parkies.

So he wouldn't get bored on the three hour ride back to Phoenix, I gave him a copy of my book and a CD of my Parkie Songs. I wonder if he's singing "Laughing at Parkinson's" today? 

Dr Santiago and YumaBev
You can find all my videos on my YouTube channel:

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Thursday, August 23, 2012

My Executive Secretary

I lost my executive secretary. I don't know what happened to her. I think she disappeared several months ago, but I'm not sure. It took me a long time to even realize she was gone.

She was an excellent secretary. She could keep me up to date on the conversation going on in the Parkinson's Chat Room, proof-read my newest blog story for typos, help me come up with words that rhymed for my songs, pay all the bills, keep my checkbook balanced, give me the proper answer to the question Wonderful Husband just asked, remind me to take my pills and wash my cereal bowl, and she could do it all at the same time. She had been with me all my life. She was the one who got me those straight A's in school and the near perfect SAT scores. She took care of the serious stuff, so that I could have fun. She was a part of me.
YumaBev being silly

My cereal bowl was the first clue that something was wrong. When I would get it out of the cabinet in the morning, it wasn't where it should be. One day, Wonderful Husband asked me about the Chat Room and I realized I hadn't been in there in weeks. The bills were still being paid, but they weren't being filed away. Her usually tidy desk was a mess. It was around this time that I realized she was gone.

I tried to figure out where she went, and why. I think she left because of the working conditions. I think she got tired of all the drugs that were flowing through her work station and just decided to sneak out one day. I wasn't sure what to do. I needed her. I was not handling her disappearance well. I decided to see if I could find her and convince her to return. 

I asked my neurologist if we could do anything about the drug problem. I was convinced it was the increase of a certain drug I was taking that caused her to leave. By my best guess, she left shortly after my dosing of this drug doubled. He suggested DBS, the Deep Brain Stimulation surgery. He said it should decrease the drug situation, but didn't know if my executive secretary would return. 

I wasn't sure I was ready for brain surgery, so he adjusted my medications instead. After a few weeks, I started to see a difference. The cereal bowl was back in it's place. (It turns out that I was leaving it on the counter and Wonderful Husband was washing it and putting it away). The pile of paid bills was being filed. I found time to tackle a sewing project and found that I could chat at the same time. My executive secretary was back! She wasn't as good as she once was, but after all, what could I expect? She has Parkinson's, too, and all those drugs I take, go right across her desk.

She and I had a long talk one day and we decided to consider the DBS surgery. I am taking medicine every three hours from the time I wake up until the time I go to bed and she thinks that is excessive. We sat down and had a long discussion with Wonderful Husband, we explained, as best we could, what had been going on. The idea of brain surgery scares the daylights out of him. I can't say I'm exactly thrilled about the prospect, but I want to keep my executive secretary happy. I need her. 
My Executive Secretary
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Saturday, August 11, 2012

My Son Mark

The first time I met Mark was in 1979 and we were both in our late teens. We lived in the same apartment complex in Orlando, Florida. The thing I remember most about this thin young man with curly hair was his smile, it lit up the room.

In 1981, I saw Mark again. I was helping out with a big promotion at the club where my first husband worked and Mark was there with his Dad, who was my husband's boss. I immediately recognized the bright smile and the curly hair (though there was less of it).

The next time I saw Mark was in 1985. My first husband had died in a car crash in 1983 and a few years later I started dating and got engaged to Mark's Dad. Mark was thrilled that I was going to be his stepmom. He still had that brilliant smile but even less curly hair.

Over the years, Mark and I remained close. We had more of a brother/sister type relationship than parent/stepchild (I was just 18 months older than him). Mark always remembered my birthday and would usually send me a Mother's Day Card just to tease me. He loved to call me Mom.

We were alike in many ways. Neither one of us had children of our own. We were both "go with the flow" kind of people and not interested in being over-achievers. If the electric bill got paid and there was food in the fridge, life was good enough.

Mark loved kids. He babysat half the kids in his neighborhood, and as they grew up and had kids of their own, he babysat them as well. There must be a hundred people who called him Uncle Mark. He took in stray cats, dogs, snakes, hamsters and "down and out" friends. His home was overflowing every holiday. Everyone loved Mark. He would literally give you the shirt off his back or his last dollar, if you needed it. Every time I saw Mark, he still had that brilliant smile and less hair.

When I was getting in bad shape, before I got diagnosed with Parkinson's disease, Mark offered to move from Orlando to Arizona to help. We said not yet, but knew we could always count on him. 

The last time I saw Mark was at Travis' (our grandson) high school graduation in 2009. It was a big event and we made the grueling trip to Florida. I drove everyone crazy by snapping pictures. I didn't know when or if I'd be able to make another trip. Mark, once again, offered to move to Arizona, but I said not yet. 

We started looking for a house when we got back to Arizona, the park model and my Parkinson's were battling each other daily. There was an empty four-unit condo building for sale. It had garage space for eight cars (my Wonderful Husband would love that) and a fabulous view (something I wanted). A single unit was plenty big enough for us and Mark could live in one and we could rent out the other two. Mark would be nearby and he could do the maintenance. We were excited about the possibility. Mark called on Sunday, but we didn't mention our plans to him, we had an appointment to see a Realtor on Monday and we would call Mark on Tuesday.

Tuesday morning, August 11, 2009, the phone rang. It was Lynn, my stepdaughter. She was hysterical. Mark had a heart attack at work. He was gone. Mark was gone. He was only 47. It was just nine weeks after our trip to Florida. I thought he'd be making our final arrangements, not the other way around. 

Today is three years since Mark became an Angel. Our home is filled with those last photos of all of us. Everyday, Mark's brilliant smile lights up my heart. I can still hear him calling me Mom and I was proud to have him as my son. I miss him.

Mark and his Dad  (my Wonderful Husband)

Thursday, August 9, 2012

Parkie Olympics - Events Suggested by Friends

I wrote a story about events I'd have at a Parkinson's Disease Olympics and my fellow Parkies have come up with some others to add to the list:

Dressage - getting dressed in the morning (Deb S)

Soup Eating - whoever gets the most in their mouth, wins (Roy R)

Target Urination - for men only, accuracy counts (Roy R)

Best Milk Shake (Mark W)

NO Jump - everyone gets gold (Michael C)

100 Meter Speed Bump - instead of hurdles (Michael C)

Walkers vs Canes (Pat V)

Freezers vs Dyskinesers (Pat V)

Javelin 360 - never know which direction it will go, spectators watch at their own risk (Darin K)

Shake & Rattle the Pole (Keith G)

Agitate the Pool (Keith G)

Hop, Step, Stagger - triple jump (Keith G)

High On Medication Jump (Keith G)

Lawn Bowls & Snooker (Shaun S)

See, I'm not the only silly Parkie on the planet. Have a Happy Parkie Day and congratulations to everyone who participated in the Olympics (including those of us who cheered from the comfort of our homes).

This sounds like fun, all we need is a few big corporate sponsors. Hmm, let's see: Shake-N-Bake? Banquet Frozen Foods? Ensure Shakes? Brawny Paper Towels? Medtronics? Weebles? Hoveround? Viagra? 

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Wednesday, August 8, 2012

Parkinson's Disease Olympics

I've been watching the Olympics and cheering for my home team, but because of this blog, I feel like I have Parkie cousins in 119 different countries, so I have been excited for everyone who wins, no matter where they live. 

The Paralympic Games are scheduled to take place right after the Olympics, so I got to thinking about a Parkinson's Olympics and what kind of events we could have. These are my humorous suggestions.

Synchronized Trembling - two or more people trying to shake simultaneously

Vault - best form for jumping out of bed when your leg cramps in the middle of the night

Diving - keeping stiff as a board while falling off platform

Unbalanced Bars - see who walks straightest after visiting several bars

Simon says Freeze - we have no problems "sticking" our landings

Rhythmic Dyskinesia - artistically timed to music

Sleep Wrestling - best performance of acting out dreams

Soda Shot - whose can of shaken soda sprays the farthest when opened

Floor exercises - who can get up off the floor fastest

Taekwan-slow - artistic movements in extremely slow motion

Bad-mitten - trying to put shaped objects in matching holes (3 hour time limit)

Sculpture - best impersonation of a statue

Flailing - most erratic arm movements when walking

Lurch - most uneven gait

Parkie Waddle - best impersonation of  a Penguin

This could be our medal:

So perfect are you .... so unlike any other

Snowflake - one of a kind

"Parkies are like snowflakes, we are all unique and all beautiful." Quote from my friend Shirley. 

Thursday, August 2, 2012

To Drill or Not to Drill: That is the DBS Question

You know the saying, "I need    (fill in the blank)    about as much as I need another hole in my head"? Well, it looks like I don't need another hole in my head, I need two!

We left at 6 am for the 200+ mile trip to Tucson, Arizona. I skipped my Parkinson's Disease (PD) medications as directed and even though it was an easy drive, I felt much worse than I did on my experimental OFF day. It was all I could do to get out of the car. I was very slow and rigid. The t-shirt I wore was accurate. Hey, it was a serious trip, but I needed to keep my sense of humor.

We arrived early and as my Wonderful Husband signed me in, Dr. Norton was already calling my name. We followed him to an exam room and sat down. He asked me about my symptoms, medications and how long ago my PD started. He spoke softly as he explained the DBS (Deep Brain Stimulation) procedure. DBS consists of electrodes inserted in your brain and a generator (the controller) implanted in your chest with wires running under your skin between them. I watched his hands carefully; they weren't shaking (a good sign in a neurosurgeon).

He has done over 600 of these operations with a very high success rate. In other words, patients had reduced PD symptoms, needed less medication and therefore had less side effects (All the things I was hoping for.) He checked my ability to move against opposing forces and my reflexes. He had me stand, then got behind me and pulled me backwards. I caught myself and maintained balance, another good sign.

He thought I would be an excellent candidate for the surgery and recommended inserting electrodes in both sides of my brain, but using a single generator. Since I am so thin, they may have to place the generator in my abdomen instead of under my collar bone (I guess I don't eat enough chocolate chip cookies.) He didn't think I would develop any speech or balance problems, since I didn't have any now. Maybe all those years as a loud-mouthed tumbling cheerleader are paying off.

I told him about my adhesive allergy and he said they'd figure something outI asked about my hair and he said they just shave off a small section where they insert the electrodes and I could wash the rest of my hair the next day. So, it looks like I won't have to wear a Dolly Parton wig, but I may have to learn how to do a Donald Trump comb-over!

He liked my t-shirt, so I told him about my Parkinson's Humor blog and since I had brought some magnets with the Parkinson's Humor web address on them, I gave him several. I asked if my Wonderful Husband could take a picture of us. He said yes and asked if I would be putting it in my blog. I said, "Yes, I write about everything." (I'm not sure he realizes his picture will be seen world-wide.)
Yuma Bev and Dr. Norton
He took us over to Olga, who does his scheduling. Olga explained the next steps and what kind of time frame we were looking at. I said, "Set it up." It will be several weeks before the pre-tests are done and likely several months before the surgery gets scheduled, so I have time to grow out my bangs for the comb-over. 

Since my appointment was over, I took my PD pills. It was noon. I shuffled out to the car and we headed for home. We stopped for lunch at Panda Express and the saying in my fortune cookie made me burst out laughing. 

The ride home was uncomfortable. I felt much worse than my trial run. It must be from sitting for so many hours. I usually walk around and seldom sit for more than 30 minutes at a time. 

By 9 pm, I was exhausted, so I took my last PD pills of the day and went to bed. It took a few days before I was back to my normal self.

I will keep you posted on the next steps and hope to have the surgery done before the end of this year. I can't imagine what it will feel like to possibly be ON all day without the horrid side effects. I can't see myself being any happier than I am now, but who knows, maybe I'll be able to enter America's Got Talent. Yeah, right. (I can hear the buzzer already)

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Wednesday, August 1, 2012

Deja Vu and Cookies, too

"The Doctor will want to see you in your OFF state, so don't take ANY Parkinson's Disease medications on the day of your appointment." Those words kept bouncing around in my head. Why? The neurosurgeon I was going to see, about DBS surgery, was 200 miles away and I had no idea what condition I would be in when I got there. So, I decided to experiment.

I normally wake up around 5 am and take my first two Parkie pills of the day, then I take one at 9 am, another one at Noon, etc., until I've taken the last of the nine pills and go to bed around 11 pm.

I'm awake at 4:40 am and since it's a few days before my doctors appointment, I decide to try a day OFF of medication. I take a deep breath and skip my first two Parkie pills. 

6 am: I feel okay, so I go walking with Freida. About half-way through our walk, my left foot cramps, badly, but I manage to hobble home.

7 am: I am still okay, but my stomach is growling , gurgling and doing flip-flops. This is not normal, so I eat breakfast (two hours earlier than usual).

8 am: Still okay, left foot cramping, but my stomach is not happy, so I eat some toast. 

9 am: I am still able to move, albeit slower. My left foot continues to cramp. My stomach is still growling, so I try some chocolate chip cookies

10 am: I am very jittery and moving much slower, but I am still able to walk. I'm hungry and eat more cookies. This OFF thing will make me fat if I'm not careful! 

11 am: I can still move. Good! This is when my appointment time will be, in a few days, and I'm not stiff as a board or shaking like the paint mixer at the home improvement store.

12 pm: I can still move, but I am very rigid. My left foot continues to cramp. My stomach is still gurgling and growling.  The tremors have started and I manage to eat lunch, but more peas end up on the floor than in my mouth. 

1 pm: My entire body feels tense, like all my muscles are contracted. The tremors have worsened and my left foot keeps cramping, but I can still walk. I eat a couple more chocolate chip cookies, but it's not helping. 

2 pm: Since I was told that I would be able to take my medications as soon as the doctor was done with me, I go ahead and stop the experiment. I take my first two Parkie pills and eat a few more cookies. Relief should come soon.

3 pm: No relief, I still feel the same, maybe slightly worse. I know this feeling, it's deja vu, this is how I felt in the days before I got diagnosed. I try to lie down, but cannot get comfortable, so I get up and eat a few more cookies. 

4 pm: Some relief, finally. I celebrate with a few more cookies.

6 pm: I am back to my normal drug routine. I still feel a bit off; headache, stiff neck, groggy and my stomach is still wonky.

11 pm: I am exhausted but finally feeling more normal.

Conclusion: I should be able to make the drive to the doctor off meds, but it's going to be a rough day. 

Note to self: pack lots of things to snack on and a bunch of cookies, lots of cookies. 

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DBS - What the heck is it?

DBS is not the abbreviation for Ditsy Blonde Singer. It stands for Deep Brain Stimulation and is a surgical option for relief of Parkinson's Disease (PD) symptoms. It won't cure the disease or stop the progression, but if done successfully, it can significantly lower the amount of prescription drugs taken and thereby get rid of aggravating side effects.

Our brain is like a high tech computer and movement depends on the smooth flow of very complex signals along multiple paths. These paths are arranged in connecting loops, so the signals are always making round trips, reporting activity back to the brain. In people with Parkinson's, these paths have little bumps or cracks in them, so the signals don't flow smoothly and erratic movements such as tremor, rigidity and slowness happen.

Bumpy Parkie path

A doctor discovered that external electrical stimulation to a certain area of the brain stopped tremors and, in effect, neutralized the erratic signals caused by PD. This finding led to the current DBS procedure. 

Since each side of our body is controlled by the opposite side of our brain, DBS can be done on one side or both, depending on how PD affects you.

The procedure requires an electrode being surgically placed in the exact right spot in your brain. You are awake during this surgery (which would be unnerving to most, but not for me, I want to be wide awake), and completely off PD medications, so they can see if your hands stop shaking or if you can move on command. They also watch for unwanted things such as double vision or slurred speech. 

Then, in a separate procedure, about a week later, the generator (a battery powered device that sends the electrical signals) is placed in your chest or abdomen and connecting wires are run under your skin to the electrode in your brain. Medtronic manufactures the DBS device and I am very familiar with their Cardiac Pacemakers (a similar type product). When I worked in a Cardiac Cath Lab, I used to observe the placement of cardiac generators on a regular basis.

Once you have healed, the device is programmed. Programming may need multiple adjustments to get it perfect for you. 

It sounds scary, and it is, but when you are experiencing bad side effects or taking medications every few hours without much relief, it's worth considering.

My Favorite Martian
The electrodes do NOT protrude from your scalp, so you will not look like a Martian. It won't short out when you get wet and you cannot recharge your cell phone by placing it over the generator. (Yes, I have been asked these questions)