I've Gotta Speakin' Problem

The title of this story reminds me of a country song by David Ball called Thinkin' Problem. The opening lyrics are: 
Yes, I admit I've got a thinkin' problem,
She's always on my mind, 
Her memory goes round and round, 
I've tried to quit a thousand times

My new lyrics would be: 
Yes, I admit I've got a speakin' problem, 
My words don't come out right, 
I sound like I've been guzzling beer, 
All day and all through the night

Hmm, maybe I've got the beginnings of a new humorous Parkinson's disease song parody? But the truth is, I never liked the taste of beer and I don't drink any other alcoholic beverages either. I have milk on my cereal and the rest of the day, I drink water. 

No matter how hard I try, I sound like I'm drunk. My upper lip just doesn't move like it should when I am speaking. Try putting a wad of gauze or a big piece of chewing gum between your teeth and your upper lip and then try talking. It isn't easy, is it?? And this isn't my only speech problem.

I also have a difficult time speaking in complete sentences. In some ways, my speech is reverting back to how you speak as a toddler. I will want to blurt out something like, "Hey, why don't we go to DaBoyz for lunch today" and instead it comes out, "Go Boyz lunch." It's extremely frustrating to me.

On top of those two problems, I also have a chronic frog in my throat, so sometimes the first few words I do get out sound scratchy. I am always clearing my throat. Add in a loudness issue and you can imagine how badly I sound. 

Then I saw an advertisement for a research study testing interaction via the internet with the SpeechVive device. SpeechVive is a device that you wear in one ear. It makes a babbling noise whenever you speak and stops when you stop. The premise is that you will speak louder because your brain will try to talk over the noise. Louder might also be clearer. I promptly signed up.  

I qualified for the study and they sent me a left-ear device, computer cords, a tape measure, a USB microphone, reading material, cartoons and instruction sheets. 

 

That black thing in my left ear is the device

I met with my online speech therapist in early January. Brianna had me set up the microphone exactly 12 inches from my mouth (hence the tape measure), take a deep breath and say Ahh for as long as I could. The she had me read a two page story about rainbows WITHOUT the device in. 

Then she had me put the device in my ear with the computer cord attached. She set the loudness of the babbling noise and adjusted when it would start and stop. 

Then she had me do the Ahh again and read the rainbow story again with the device in. I definitely spoke louder. Then I had to make up stories, lasting 2 minutes, to go with the cartoons provided. Who would have thought I would EVER have trouble talking for 2 minutes about anything??

I agreed to wear the device daily and to talk a minimum of three hours a day, even if it meant reading out loud to Parky Raccoon and his friends Miss Bacon, Jerry Giraffe and Parky Penguin. They mostly paid attention and didn't interrupt me too much. 

Miss Bacon, Jerry Giraffe, Parky Raccoon, Parky Penguin

I did as I was instructed and had friends ask me if the thing in my ear was one of those Bluetooth cell phones or if it was a hearing aid. I tried my best to explain that it was to help me speak louder, but I don't think they understood. Most people don't know that Parkinson's affects our voices, too.

After six weeks, I had another online session with Brianna. Again I did the Ahh and rainbow story with and without the device and I was louder than the first sessions. We did the make up a two minute story about the same cartoons and then she just had me talk for two minutes about any topic. I chose talking about the years my Wonderful Husband and I travelled in a RV. She gave me some exercises to do about the upper lip rigidity and I agreed to continue to talk 3 hours a day.

Six weeks go by, and I have another online therapy session with Brianna. Once again I do the Ahh and read the rainbow story with and without the device and my voice is louder. We do the cartoons and a topic of my own (this time I tell her about my flight stories.) At the end of this session, she informs me the research study is done.

A few days later, the research coordinator contacts me and wants to know if I want to purchase the device for my own personal use or return it. I choose to return it. While it did trick me into talking louder, it didn't help with the other problems I have. I mostly ended up sounding like a loud drunk with a bad cold.

I will have one more follow up session, three months from now. I am still trying to facial exercises and have turned up the humidifier in my bedroom at night to see if I can help the scratchy throat. 

At least I can still type my thoughts clearly. Maybe I'll work on the rest of those song lyrics? Ahhhhhhhhhhhh

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DBS Update: Five Years Later

Well, it has been FIVE years since I joined the DBS "Holes in My Head Club" for Parkinson's disease and the thing people want to know most is...how am I REALLY doing?

I am still doing fairly well. There isn't much change from last year. My DBS settings are slightly higher; up .1 on my left side and .3 on the right. However, they are still much lower than the average DBS recipient.  

current DBS settings

My battery is reading 2.85V, so I still have a ways to go before it hits 2.59V, and will need to be replaced. 
Dr. Norton, my neurosurgeon, promises not to retire before then. Dr. Norton is 77, still working full time, and one of the best. 

Battery level

I now take one half of a carbi/levodopa pill on odd days and two halves on even days. I tried taking two halves every day, but it was too much.

Daily pills: Allergy, Sinemet, Thyroid 

I'm still a Happy Parkie and I try to find some humor every single day. I feel better when I laugh, so I laugh at cartoons, stories, neighbors telling jokes, funny TV shows, etc. But if you want all the details, please keep reading. 

Tremors: My intention (action) tremor is almost non-existent, except early in the morning before I take my first carbi/levodopa pill or if I am under duress. Resting tremor was never a problem for me. I still get bouts of internal tremor occasionally, but I am so used to them, I don't even notice. 

My rigidity is also well controlled, unless I stay seated too long, then it takes considerable effort to get to a standing position. Getting out of the passenger (right) side of the car is becoming more difficult, but the drivers side presents no problems. I also noticed that I have been hooking my foot off the side of the mattress to help me turn over in the past few months. Straightening up when first getting out of bed takes more effort than it used to, but then again, I'm another year older.     

My gait is becoming more shuffling. I also notice my right foot hits toe-first whereas the left rolls easily heel-toe. I can force the right foot to roll and take bigger steps, but I must concentrate totally just on that. As soon as I'm distracted, the shuffling returns.

If I grab a cart when I am shopping, pushing the cart seems to help with my gait. I don't know if it's the actual pushing, the way I'm holding my arms/hands or a mental thing, but it works. Look closely at my feet in this video.   

Adjustments of DBS settings help somewhat, but then cause other problems that are worse. Adding an extra dose of carbi/levodopa causes my right foot to kick out sideways and more dyskinesia, so I just live with it and am thankful I'm not worse.  

Bradykinesia (slowness of movement) varies during the day, but overall, my right side is considerably slower that my left. This is very noticeable during the finger touches, open/close hands and foot tap tests performed by my Neurologist. Not that I actually use any of those movements in real life! Does anyone?

My Wonderful Husband notices this mostly when I am trying to scratch an itch or use a knife to cut meat. It's as if my right hand refuses to move back and forth quickly. I have never noticed this, but I'm glad he does. 

That takes care of the Motor symptoms designed to be helped by the DBS. The Medtronic DBS is doing its job!

As far as the non-motor symptoms, I see some advancement of my Parkinson's disease:

I drool. It's embarrassing. I try to keep my mouth shut, but it re-opens and combined with a typical Parkinson's head down posture, saliva sneaks out. I tried chewing gum, but I have always swallowed the gum after a few chews, and I still do the same. I suck on mints, regular or sugar-free, and this helps. If possible, I sit with my hand under my chin, to keep my mouth closed. My Neurologist said we could try Botox, but I declined. I'll figure out a non-medical way to deal with it.

YumaBev with hand under chin

Constipation: If I eat my regular diet and drink plenty of water, I have no problems. If not, well, you know.

Speech: My voice is getting softer in volume. I use the speaker option when making phone calls and this helps me with the volume. My upper lip doesn't move correctly, and this causes some words to sound slurred. When I preview voicemail recordings I leave, no matter how hard I try to speak clearly and with inflection, I sound like a monotone drunk.   

I used to be excellent at reading out loud, and I enjoyed it, but now find I stumble on the words. 

When I speak, the words seem to have a difficult time getting from my brain to my mouth, even though they are both in my head. It's as if the words travel all the way down to my big toe first, then some take a detour to my other big toe, and then a few of the words stop and visit my pinkie finger. Well, you get the picture. 

Doing all the speaking at our monthly Parkinson's Support Group meeting, even with a microphone, is exhausting. 

I will be participating in a speech related clinical trial in early 2018, so I hope it helps.

Cognition: I can sit here and easily type out my thoughts. And by easily, I mean, the words flow easy; getting my fingers to type them requires using the backspace and delete keys often. 

If you ask me to subtract 7 from a starting number and continue, I can do it easily. (I wonder how the "new math" students would do with this?) But if you ask me to say as many words that begin with the letter "N" in 30 seconds, I probably won't name as many as I could last year. 

Multi-tasking: I used to be able to do many things at the same time. On a scale of 1 to 10, I was a 16. Now I have trouble answering a question while I am pouring milk on my cereal. It is frustrating. My neurologist dismisses this as age related, but I think it's a Parkie thing. My Wonderful Husband and most of my friends are all 20+ years older and none of them have this problem.

Driving: My built in GPS still works good though, and I am still the primary driver in our house. I know what exit to take, which lane to be in and where to turn when we travel to Tucson to see my Parkinson specialist. It's easier for me to just drive than for me to try to give the directions to my Wonderful Husband, especially with my speech delay. 

Sleep and fatigue: I sleep about 8 hours a night, but still seem to run out of energy every afternoon, so I take a nap. If I skip the nap, I find it difficult to stay awake while watching TV in the evening. 


Miscellaneous: I seem to have a constant stuffy nose and congestion in my throat, and my primary doctor recommended an OTC 24-hour allergy pill, which seems to help. 

The two smaller toes on my right foot randomly decide to curl under. I've tried to see if it's an on/off medication timing thing, but it never happens at the same time of day. It is not too painful, but it has caused the nails on those two toes to become thick and ugly. (This is my excuse for a pedicure!)  

All and all, year number FIVE with DBS has been very good and that keeps me a HAPPY PARKIE indeed!

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Financial Exploitation: Don't Become a Victim

It usually starts with a fender bender. You misjudged how far away the pole in the handicap parking space was and now there's a small dent in your front bumper. You're embarrassed, so you tell no one, not your family, not even the insurance company. It could happen to anyone, you say to yourself.

Then you bump into the front garage wall as you are parking. I was distracted; you say to yourself, I'll put down a brick to remind me where to stop. That will fix the problem. 

The next time you are on your way to the store, you almost get in an accident because you forgot to look both ways at that STOP sign near your house. Now, you get nervous every time you have to drive somewhere, so you start limiting your outings and take more back roads.

At your next Doctors visit, the Doc asks about your driving abilities and you say, I don't go out much. The Doc says, maybe it's time to give up driving? You say, you'll think about it. 

But how will you get to the store? Your children live elsewhere or are busy with their own lives, plus you don't want them to think you are old and feeble. You don't want to impose on friends or neighbors; so you look at the ads on the community bulletin board outside the grocery store. And boom, she has you. You are about to be financially exploited and you don't even have a clue.     

The first thing she does is try to be extra friendly. She will ask about your children, how often they come over, do they live nearby. The less they see of you, the happier she will be. She'll tell you about her family and how she took care of her Grandma or Grandpa and that's why she enjoys helping older people. She'll disable your car when you aren't looking, by pulling a wire or disconnecting the battery cable. When it won't start, she will say, don't worry about getting it fixed; I'll drive you anyplace you want to go.  

Soon, she will be calling you Grandpa or Auntie when you are out in public. She wants the checker at the grocery store and the bank teller to think she's family. Then she will start making snide comments about how little your own children care about you. 

She'll recommend people that she knows to cut your hair, mow your lawn or fix your leaky toilet. She'll distance you from everyone you used to know. Soon, every person you see is a friend of hers. She has slowly taken control of your life and you don't even realize it.

She may tell you that she knows a "better Doctor" for you to see. She'll help you fill out the forms, now she has your date of birth and social security number. She innocently says, why don't you put me down as your emergency contact? Your kids are too busy to deal with your problems, but I will always be here for you.

Then she'll take over dispensing your medicines, and add in a bunch of "vitamins." When you complain about feeling wobbly or confused, she'll offer to help you more and more. She may offer to move in to your home in case you fall at night.

Then she'll start complaining about how she is losing money from her other clients because she spends so much time with her favorite, you. She'll ask if she can borrow some money from you to pay her electric bill. Next it will be her rent. Then one of her children will be in an accident, and of course, she has no insurance. Then her car will need repairs and she can't use yours because it doesn't start. Soon you'll be giving her more and more. What other choice do you have? You need her, she has seen to that. Your address book has mysteriously disappeared and all the phone numbers on speed dial somehow got erased. 

She'll warn you not to answer the phone when she's not there. She'll say there are bad people out to get you or her. She doesn't want you blabbing to friends or family about her, so she'll tell you to keep your friendship a secret.  

She'll offer to get your mail, and help you write out checks. She'll bring her family over, and things will go missing. If you notice, she'll say it got broken or she'll say, don't you remember giving that to my son for his birthday? 

She will target the accounts that are in your name only. She's afraid to touch the others because she can't be sure the other person listed isn't getting duplicate statements. During inclement weather, she'll offer to go to the store or bank for you. She will tell the clerk, its okay, I'm family and you aren't feeling well. 

She will offer to update the info on your bank accounts, life insurance policies and everything else she can think of. She will make sure you are confused, and ask you to sign blank forms. Then she will change the beneficiary to her name. She's a master thief. 

If you are lucky, she'll disappear when everything is gone. If you aren't lucky, she may figure out a way for you to accidentally slip and drown in your bathtub.

Please, don't become a victim. If you live by yourself and need help, get it through an accredited agency. Let your family members know what is going on. Add a second trusted person to all your financial accounts and ask the companies to send duplicate statements to the other person. Ask your friends and neighbors for help. Most will be glad to drive you to the store or Doctors office. If you are embarrassed to ask, think of how much more embarrassed you will be when every penny you had is gone? These criminals know who to target.   

I know exactly how these thieves work because my Dad was a victim. She did all of the above. When I confronted her, she bragged about how she'd done it before and gotten away with it. The only financial account she didn't touch was the one with MY name on it. My Dad had added my name after my Mom died. Nothing she took was recovered, by the time I figured out everything she'd done, she had disappeared. My Dad was too confused to remember whether he had signed stuff or not and without his testimony, there was nothing that could be done. I used she in my story, but there are men thieves out there, too.

How did I know something was wrong? My Dad offered to fly out to visit me. She did not want me coming back home. She didn't know that my Dad absolutely hated to fly. As soon as he suggested it, I knew something was terribly wrong. 

If you suspect a family member, neighbor, or even one of your customers is being exploited, please REPORT IT! Search for "Adult Protective Services" or "Elder Abuse" online and make a phone call. In most cases, you can remain anonymous. You may save someone's dignity and maybe their life. 

Afterwards, I had bank tellers, neighbors and grocery store clerks tell me they thought something strange was going on. One bank teller told his supervisor about his suspicions, but no one reported it. Don't become a victim. Let's all watch out for each other. 

Let's Talk About Parkinson's Medications

This blog story is about MY experience with Parkinson's medicines.

Since my DBS surgery, I 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 dyskinesia, 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 don'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 Parky 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 on an empty stomach, so I took them at 8 hour intervals. 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 adjusted 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 two weeks later, 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 dyskinesia 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. Discuss ALL medication changes with YOUR DOCTORS. 

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Things Not Known about Parkinson's

This is a Letter to the Editor that I wrote, it was published in the Yuma Sun newspaper in October of 2012. You have my permission to submit it, or your own revised version, to your local newspaper. Let's share the facts of Parkinson's disease with our communities.

This is addressed to all the physicians in my community. I have Parkinson's disease. Here are some things you might not know about Parkinson's:

1. Almost 35 percent of Parkinson's patients never get a tremor — that's right, no tremor. The rest may have action tremor and not resting tremor. The tremor may be on just one side of the body; Parkinson's doesn't have to be on both sides.

2. No one is too young to have Parkinson's disease. I know people who were diagnosed in their teens. It is not in our imagination, we are not faking symptoms, we aren't drinking too much coffee or just anxious. There is definitely something wrong. Help us.

3. Stiffness and slowness of movement are common symptoms. Changes in gait and lack of arm swing when walking are telltale signs. 

4. Parkinson's medicines can cause melanoma, so refer all your patients to a dermatologist for a complete skin check.

5. If a patient presents with upper back, shoulder or neck pain that you can't find a clinical reason for, it could be an early sign of Parkinson's disease. Don't dismiss it.

6. Parkinson's disease can affect our heart, and the medicines we take can affect our blood pressure. Your Parkinson's patient might just need their Parkinson's medications adjusted, not another prescription.

7. Changes in the ability to smell may be an early sign of Parkinson's.

8. Sleep changes, acting out dreams, vivid nightmares are all early signs of Parkinson's.

9. Changes in handwriting, letters becoming smaller and cramped are another early sign.

10. Changes in voice, slurring words and speaking softer are all signs.

11. Changes in facial expression or a blank look are signs.

12. Stooped posture or loss of balance is common.

13. Cognitive changes can be a side effect of the Parkinson's medications, so don't just assume otherwise and add another Rx.

14. Adding another medication to the tons we take isn't always the answer — it could be one of the medications we are already taking that is causing the problem.

15. Refer your patients to a movement disorder specialist preferably or at least a neurologist who knows about Parkinson's. Don't try to treat them yourself; Parkinson's is too complicated. I know, I have it.

Beverly Ribaudo

Psyching Out the Neuro-Psychologist

The day of my Neuropsychology exam started at 4 am, since we had to drive 219 miles to Tucson, Arizona for my appointment. We could have gone the day before and stayed in a hotel, but I figured I'd sleep better in my own bed and since I'm usually up by 4:30 or 5, it wouldn't make much difference. I was wrong; I didn't sleep well at all.

The drive over was fairly easy, there's not much between here and Tucson except cactus and jackrabbits, and the rabbits were all sleeping. I did see some interesting signs on the way. The first one read, "Solar is the Answer," then there was, "Christ is the Answer" and finally, "Jesus is the Answer." Right then, I knew I had three possible answers to whatever questions the tester might ask.

We arrived a few minutes early and soon Karin (the Neuropsychologist) called both of us back to her office. The first part of the exam was an interview. I answered all of her questions and my Wonderful Husband bragged to her about my Parkinson's advocacy, this blog, my book and how I'd done a TV interview the afternoon before. I wore my "What's Shaking? Just Me!" t-shirt just for fun and Karin noticed it, so I was pretty sure I passed the "no signs of depression" part of the test. 

My Wonderful Husband was sent out to the lobby and the real testing began. She told me she was going to say three words and I was to repeat them back to her and try to remember them because she would ask me to say them again later. When she said the three words, which I won't repeat here, I smiled because I immediately thought of my good Parkie buddy Jim and his wife Penny.

After the three words, we did all kinds of memory tests. I drew my renditions of geometric shapes she'd shown me. I repeated numbers, forwards and backwards. I answered questions and tried to repeat back stories. I did well with the numbers in the stories, but not so well with the names, which didn't surprise me one bit. I warned her I was good with numbers and terrible with names. I did math problems and connect-the-dot games. 

shape drawings

Then it came time for the dexterity tests, the dreaded pegs-in-holes. I did terrible with my right hand and not much better with my left. No surprise with this outcome, I actually did better than I thought I would. Sometimes, I can't even pick up a fork right-handed, much less a tooth-pick sized peg.

We took a break for lunch, then two more hours of testing and we were done. She said I had an amazing memory and she didn't see any reason why I couldn't proceed with the DBS surgery. She asked me not to detail every single test, verbatim, in this story. I promised I would not and we left.

My Wonderful Husband and I headed back to Yuma, 219 miles away. All the way home, and most of the evening, I kept trying to remember the three words on a list of fifteen that I missed. Karin kept repeating these fifteen words over and over and I would say them back and only come up with twelve. It was driving me crazy.

When I walked with my neighbor Freida the next morning, I was telling her about the tests and how I kept missing three words. She asked me to say all the words to her, so I did. When I was done, she laughed. She said, "You just named off sixteen words, not twelve." Karin was saying sixteen words, not fifteen, and I was repeating ALL of them, not twelve. Apparently, I can't count and talk at the same time. Gee, I hope Karin doesn't read this and change my score.

By the way, I didn't get to use Solar, Christ or Jesus as answers to any of the questions Karin asked.

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Studying for My Psych Test

I am planning on having the DBS surgery and to qualify, I need to have what is known as neuropsychological testing. This is a big medical word that simply translated means: Is she alright in the head? 

They will check for signs of depression, dementia, cognitive and memory problems. Having any of these isn't necessarily a surgical no-no, but they might follow you more closely afterwards.

Some of my Parkie friends, who have had such tests, gave me advice. They warned me about lists and lists and lists, plus math problems and putting pegs in holes, so I figured I better study before I went.

I'm not worried about the depression part, I'll just show them my blog or sing one of my songs and pass that test.

I didn't have any pegs or holes to practice with, so I used a seven day pill container and a bowl of M&M's. The idea was to put the various colors in the separate sections as fast as I could, but I had a problem, I kept eating them (red is my favorite). 

The math problems shouldn't give me trouble, I was somewhat of a math genius in school and even wrote a computer program to do my homework. However, if they do those "Bob got on bus # 7 at State Street and there were 5 people on the bus, 4 got off at Main Street, 3 got on at Harley Street and 2 got on at Grover Street" and then ask, "What was the name of the guy who got on at State Street?" I will be sunk. I am terrible with names, always have been, always will be. Why do you think I always say Wonderful Husband in these stories? 

I was told they will say lists of words and ask you to repeat them back and the lists will get longer and longer. I can usually remember what is on my grocery list, until I get to the grocery store, then I promptly forget until I am back home. One person said they asked her to name as many items as she could that would be found in a grocery store and started with the letter B. So, I said, "Beer, beer, beer and beer." which is funny since I don't even like beer. The letter C is on my usual grocery list: Cereal, cereal, cheese, cereal, cookies, candy, cereal, croutons, cereal, carrots, cereal, canned veggies, cereal, chicken, cereal, chips, cereal. I eat a lot of cereal.

Well, I guess I have studied enough. I will let you know if I passed or not. 

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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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