Shoulder Pain with Parkinson's

My shoulder problem began more than two years ago when it was time to put on my pajamas. I went to take my pullover shirt off, using the two-handed crossover method I'd used all my life and...OUCH!

There was a pain in my left shoulder joint. I reached back with my left hand to unhook my bra and another OUCH!  

I tried to remember if I had done anything unusual recently but there was nothing. When I went to put my left arm under my pillow for sleeping, this was also painful, so I slept on my right side all night. 

By morning, I was a grumpy Parky. I could find no humor in this situation. I didn't want to aggravate my left shoulder, so I chose a button-up shirt. I was careful not to raise my left arm too high or behind my back.  

Thinking that it might be a Parkinson's disease rigidity problem, I tried taking more carbi/levodopa. All that did is cause more dyskinesia. I tried increasing my left side DBS settings, but that didn't help either. 

I made an appointment with Ana, my primary care provider. She did an exam and suggested trying a course of methylprednisolone and gave me some exercises to try. I went back 6-weeks later, nothing had changed, so she gave me a cortisone shot. This didn't work either. 

I made an appointment with an Orthopedist that Ana recommended. He took x-rays of my left shoulder  and it was normal. A month later, I had a CT scan with contrast done on my left shoulder. It was also normal (of course.) 

He said there MIGHT be a small bone spur that's causing the problem. He suggested exploratory surgery, but I declined. So he gave me a cortisone shot in the left shoulder and said if it doesn't work, come back when you want surgery. This cortisone shot didn't work either and there was NO WAY I was going to have someone go digging around looking for something that might not even exist. I would just continue to be careful how I moved my left shoulder.

Then June 2019 came and I had my DBS battery replaced. I increased my DBS settings on my right side because my right foot was dragging. The small amount of carbi/levodopa I was taking, half a 25/100 pill every other day, caused severe dyskinesia. I cut back to twice a week, then once a week, and finally stop taking it completely. 

YumaBev with arm behind back

Shortly thereafter, without thinking, I reached back with my left arm to unhook my bra and there was no pain. I reached my left arm above my head and no pain! Yippee!!  

YumaBev with arms raised up

I asked my Movement Disorder Specialist when I saw her in December if my left shoulder problem could have been caused by the carbi/levodopa?

Yes, she said. You probably developed what is known as levodopa-induced dystonia. Isn't that interesting?? Just what we Parkies need...another medication side effect. 

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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Programming a Parkie

Lip curling upwards

I went back to Tucson, Arizona (450+ miles round trip) for my first official DBS programming about ten days ago. Since my appointment wasn't until 2 pm, I took my morning dose of carbi/levodopa and ropinirole, but skipped the second dose, which was due at 11 am. By appointment time; a little rigidity and slowness had returned, but my face was the most affected. My upper lip was doing a weird curling upwards thing (almost like Elvis).

Programmer controller

Stephanie, the programmer, checked my blood pressure (it was fine) and then got out her programming box and did some "is everything working" tests. She asked me how I was doing, how I felt, what medications I was taking now, and what Parkinson's symptoms I was having. I told her my "goal" was to get off all oral medications completely. She said that was the wrong attitude to have and that my "goal" should be to feel as good as I can all day, even if it requires some oral medications. So, I got a new attitude!

My remote

My DBS unit comes with a remote control and all I could do, so far, was turn it on or off. Stephanie hooked up the antennae and showed me how to adjust the settings myself, within limitations she set. Since the right side of your brain controls the left side of your body and vice versa, the controller is designed to mimic your body, so when I look at it, the left number is for my left side and the right number is for the right side of my body. It is less confusing for us that way.

My remote with antennae

The antenna clips on to my shirt and must be positioned directly over the unit in my chest in order to work. Once it "connects" I can see my current settings, battery level and status. I can then turn each side up or down. She set limits, so I can't zap myself. When I walked in to her office, my left side was set at 1.0 and the right at 1.2. When she was done, my settings were at 1.2 and 1.4 and the rigidity and slowness were gone, but my face still felt strange, so I went ahead and took another carbi/levodopa and ropinirole. She said I might want to put the settings back to where she started if I got dyskinesia or other side effects and then gradually move them upwards over a few days. She said, "You know best how you feel."  

My current settings

As my brain continues to heal from the trauma of the surgery, adjustments will need to be made. Since my appointment, I have played with my settings and oral medications. I am now down to three oral doses a day and my settings are still at 1.2 and 1.4. It will be a slow process requiring several more trips to Tucson, but I am very happy with my results. I have almost no rigidity or slowness and only a slight tremor first thing in the morning. My upper lip still does the Elvis curl, but the oral medications relieve that. 

Even though my motor symptoms have almost disappeared and people (including my beloved Dr. Z) say, "You don't look like you have Parkinson's anymore," I still HAVE Parkinson's and still find my Energeezer Battery running out of juice. So, I have learned to pace myself and not overdue it. 

The bottom line; would I do it over again? The answer is a definite YES. Besides, you can't imagine the fun I am having. I tell friends about the DBS, how I am now "electrified" and then when they hug me, I say, "Bzzzt" and make them jump. Nice to know I haven't lost my sense of humor.

New electrified YumaBev

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Parkinson's DBS Surgery: The Results

Total miles driven:                         2,758
Gas for six trips to Tucson:           $489.87
Four nights in a hotel:                   $402.11
My co-pays for everything:           $970.00
Amount my Insurance paid:      $26,672.77
Price for the Neurostimulator:   $43.929.87

No more foot cramps:           PRICELESS
Sleeping through the night:   PRICELESS
Feeling ON all a day:             PRICELESS
No dyskinesia:                      PRICELESS


Would I do it again? Absolutely.
Just look at the before video:

and the after video:

I am sleeping longer, but I still get tired during the day. My arms and legs don't feel heavy, I just get sleepy. I have had two surgeries in less than three weeks, so my body is still recuperating. Dr. Norton just turned the unit on and set it very low, so I know it will be better when I go back for detailed programming in two weeks. I have cut back on my medication by about half already and all of the side effects I was having are gone. I am a very, very Happy Parkie.

You can find all my videos on my YouTube channel:

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

Why DBS?

I am a week away from DBS surgery. I have had a lot of people contact me and ask why, specifically, I am considering such a step now. To most, it seems like an extreme measure; a last resort, but it actually is a quality of life decision.

Even though I was only diagnosed with Parkinson's five years ago, I have had the disease for at least sixteen years. I had excellent results from medication when I first started taking it. The change in my physical condition after just five pills was miraculous and I wish I had before and after video to show you. 

I got by on just three doses a day for almost four years, but then the disease progressed again. With Parkinson's; you develop symptoms then stay at that level for awhile; develop more symptoms and stay at that level for awhile; develop worse symptoms and stay at that level for awhile, etc. I am now in my sixth "get worse" period and my "stay at the same level" times are decreasing. A year ago, I was doing well on three doses; a few months ago, I was doing okay on six doses. Now, I am not doing well at all. (Every person with Parkinson's progresses differently.)

If a picture is worth a thousand words, then this video should explain why I am having DBS. This video is eight minutes long and shows a typical day for me. I repeat the same routine (typical things done daily) over and over again, every hour or so. Rigidity and slowness (bradykinesia) are difficult to capture, but I think I've done a pretty good job. Have a look:

If the surgery goes well, I expect to have an increase of six hours of ON time a day and hopefully eliminate some side effects (foot cramps) at the same time, which would definitely improve my quality of life. 

You can find all my videos on my YouTube channel:

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

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Do you smell that???

"Do you smell smoke?" "Do you smell gas?" "Do you smell (fill in the blank)?" I was like the Verizon cell phone commercial where the man keeps saying, "Can you hear me now?" I was driving my Wonderful Husband crazy.

I smelled things that weren't there and every non-existent smell was icky. I never smelled anything pleasant, like fresh baked cake or cookies. No roast turkey or pizza. Sometimes the smell would last for an hour; sometimes it disappeared in a minute or two. 

Yummy Cake

I was driving into town to do some shopping and all of a sudden I smelled the distinctive odor of burning wires. Was my car on fire or is it another fake smell? I didn't know, so I pulled into the nearest parking lot. I popped the hood and found nothing. I closed the hood, climbed back in the car and the smell was gone.

I was doing laundry and when I opened the dryer door, I smelled the "skunk" additive that they add to natural gas lines. "We have a gas leak," I yelled to my Wonderful Husband. He came running and said, "I don't smell anything." I took another sniff and the odor was gone.

While watching TV one night, I smelled bleach. We don't even have bleach in the house. I woke up one morning and my eyes were burning. I smelled raw onions. It smelled like someone was holding a whole bowl of cut onions right under my nose. While sitting at my computer desk, I smelled the awful burnt orange odor that was prevalent near the orange juice factories in Florida, but Florida was 2000 miles away. Most of the time, I knew the smells were fake, but with some, like gas leaks or smoke, I had to go and ask, "Do you smell that?" 

Raw onions

My sniffer had gone haywire. The technical term is Olfactory Hallucinations and I guessed that it was a side effect of a Parkinson's medication, but which one? I looked over my Charting Notes and saw a recent increase in one prescription. I asked my Neurologist if we could reduce that particular medication. We did and, for the most part, the "smells" disappeared. Oh, they pop up occasionally, usually in the morning, about an hour or so after I take the first dose of the offending prescription medicine. 

My latest icky smell: Wet dog!


Many people with Parkinson's have a diminished sense of smell. I am fortunate that my sniffer still works. It works too well sometimes. I can't go in to stores where scented candles or soaps are sold, the strong aromas overwhelm my senses and give me a headache. I try to purchase as much unscented home items as possible. Some people have olfactory hallucinations that aren't caused by medication, but by the Parkinson's itself. Every Parkie is different.

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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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Red spots, Barnacles and getting older

I went to see Dr L, my dermatologist, in April 2012. Since either having Parkinson's Disease or the medicines I take for Parkinson's Disease can increase my risk for melanoma (the scientists aren't sure which), I get a complete skin check every 6 months.  


This visit had me worried.  I had basal cell and squamous cell cancers cut off my nose back in 2009, so I pay attention to my skin.  Several weeks ago, I noticed a red spot on my nose, a black spot on my neck and a mole on my arm seemed to have darkened.

red spot on nose

black spot on neck

mole changed color

Since my regular appointment was soon, I waited.  I was led into an exam room, given the obligatory "one size fits none" paper gown and told to undress. (Why is it always so cold in Doctor's offices?) Dr L came in with a huge orthopedic boot on her foot. I asked what happened. She said "I broke 3 toes and am not saying how", then laughed.  Dr L has a great sense of humor, she likes to joke around and, why not?  We're sitting there naked in flimsy paper gowns, so she has a captive audience!


She asked about my Parkinson's and I told her my story about her (All the skinny on this Parkie) was a fave of my readers and she said " Oh my, WHAT did you say about me?" and laughed again.  We made small talk as she scanned every inch of me, paying particular attention to my nose.
  

Exam room items

I asked, meekly, about the "spots".  She said the one on my nose was vascular (probably blowing your nose too much from allergies), she said the one on my arm was just "your skin getting old and sun damage" and she called the one on my neck a keratosis or barnacle. 


She said everything was fine, she'd see me in 6 months and disappeared.  I got dressed and found myself singing "Barnacle Bill the Sailor Man" the rest of the day!  I was a very Happy Parky, even though she said I was old and had barnacles like an old ship! But my nose was spared the scalpel once again. Whew!


PS Mention of melanoma risk is in the fine print of Stalevo, Sinemet, Requip and Mirapex. All of which I have taken during my treatment of Parkinson's.


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Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!

Parkinson's Disease and My Sweet Tooth

I read a Tweet from the Michael J Fox Foundation on Friday, April 6, 2012.  It said:

Interesting associations found w/ #parkinsons from @23andme, "sweet tooth," loss of smell http://bit.ly/HjFovS cc: @YumaBev  

Since they had cc'd it to my attention, I read the article right then.  

Guess what?

It turns out the folks at 23andme (a genetic testing company looking for bio-markers for Parkinson's Disease) found some surprising associations. One of them was a tendency to develop a sweet tooth after Parkinson's Disease diagnosis.  

Angel food with strawberries

The story piqued my interest and I began thinking about my own sweet tooth. 

Lemon meringue pies

I was a strange child.  I did not like sweets.  My parents and my siblings all loved sweets. I used to joke that by the time I was born, all the sweet tooth genes were gone.  When we bounded in the door after school, the others grabbed a handful of cookies and I grabbed a chunk of cheese.  This made my birthday celebrations tricky for my Mother, who was an exceptional baker.  I did not like cake or pie and I really didn't even care for ice cream, so Mom would improvise. Candles in cubes of cheese, in slices of apple, sticking out of the bowl of mashed potatoes or my favorite memory: She made a fancy jello ring, only it didn't quite set firm enough and the candles slowly fell over the sides on the way to the table. 

My lack of interest in sweets continued into adulthood, I only ate a bite or two of my own wedding cake and I still prefer cheese.  

Our wedding cake

In the last couple of years, things have changed.  I find myself coming back from the buffet with desserts on my plate instead of fruit and salad.  Unless it's chocolate, which I still don't like, I will eat birthday cake with ice cream at parties.  I've begun to eagerly look forward to my neighbors making holiday cookies and my walking buddy Freida, hasn't made one dessert yet that I didn't want a second piece.  

Pineapple upside down cake

What is going on with me?  
Has my sweet tooth gene finally awakened? 

Bev and a cake

Apparently not, apparently I can blame it all on Parkinson's.  Yes, it's all Parkinson's fault.

Pumpkin cake

Now, I have a question for the researchers. My sweet tooth only started AFTER I started taking medications for the Parkinson's. I had no sweet tooth for the 8+ years that I was searching for a diagnosis. So, is the sweet tooth caused by the Parkinson's or just another strange side effect of the medications we take?

Cherry cheesecake

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Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon or your favorite online book seller. Thank you and have a Happy Parkie Day!

Pharmacology of Parkinson's Disease

Reading all the fine print on those fact sheets that come with Parkinson's disease medications is confusing and boring, so I decided to use humor to try to explain it.  I got the idea of using farm references by the phonetic pronunciation of Pharmacology (FARM-a-college-ee).


Parkinson's disease is caused when certain neurons in our brain die and quit producing dopamine.  Low dopamine levels cause the signals from our brain to our muscles to get scrambled and produces the erratic movements. Okay, easy enough, just give us dopamine.  The solution sounds simple, but there is a catch: our bodies are very protective of what it lets in the barn (brain) and dopamine can't even get on the farm.  

Dopamine - stay out!!!

The scientists developed levodopa which can get on the farm, but by itself, levodopa causes intense nausea and vomiting and turns into dopamine and still can't get in the barn (brain).  The scientists found that by adding carbidopa to the levodopa, they could prevent it from becoming dopamine and quell the nausea.  Carbidopa is like a Judas Goat, it leads the levodopa past the guard dogs and right into the barn (brain). The combination of carbi/levodopa is called Sinemet.

Sneaks the dopamine in

The problem with Sinemet is that our bodies try to get foreign items out of our bloodstream.  It takes about 45 - 75 minutes from mouth to blood stream and then our efficient blood cleansing organs get rid of it about an hour later, so not much makes it into the barn (3% according to the experts).


The scientists went back to work and found out that if they added another drug called entacapone (Comtan), they could keep the Sinemet in our bloodstream longer and therefore more can be herded in to the barn known as your brain.  The brand name combination of Sinemet and Comtan is called Stalevo.

Herding more into the barn

Comtan has a wonderful side effect of making your urine turn bright yellow, orange or even brown.  This has a tendency to freak out the lab techs when they ask you to pee in a cup.  It is my own personal observation that this yellow stain also creeps into your saliva and perspiration and I am pretty sure that it is staining my teeth as well (just call me mellow yellow).


There is another class of drugs called dopamine agonists. These drugs aren't designed to replace the missing dopamine, they are designed to make the receptors that use dopamine work better without it. It's kind of like dangling a carrot in front of a donkey.  

Agonists act like a carrot and can cause you to act like a donkey

There are 2 main agonists: Ropinirole and pramipexole, known under the brand names of Requip and Mirapex. These drugs do such a good job of stimulating the receptors that they can cause dangerous obsessive or compulsive behaviors such as gambling, uncontrollable shopping or risky sexual activity.  IF you are taking an agonist, you need to be aware of these potentially life altering side effects and find someone you can trust to monitor you. On the up side, agonist's have also been tied to increased creativity.  People start writing poetry or take up painting when they had no interest prior.


Rasagiline (Azilect) and selegiline (Eldepryl) are other drugs that are used in Parkinson's and are in a class of medications called monoamine oxidase (MAO) type B inhibitors.  They work by increasing the amounts of certain natural substances in the brain and act similar to the agonists.  They are often prescribed to recently diagnosed Parkies in an attempt to delay prescribing the Sinemet.

There are many other drugs used to either treat the symptoms of Parkinson's or the side effects of the drugs we take to relieve our symptoms.  

Treatment of Parkinson's consists of easing our symptoms only.  None of the currently available medications will stop the progression or cure it.  Over time, Sinemet causes unpleasant side effects (Parkinson's Drugs Side Effects) and becomes less effective, requiring us to take higher and higher doses, so Doctor's try to reduce the amount of it we take or delay its usage.

The reason Sinemet loses its effectiveness is the brain needs healthy dopamine producing neurons to convert the levodopa into dopamine, and, as the disease progresses, there are less and less neurons to do the converting.


I wrote a song about Sinemet, well, just the lyrics, the music is borrowed.  Have a listen:

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

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parkie Day!

Parkinson's disease Drug Side Effects

I am different than most Young Onset Parkinson's disease patients and that difference may explain my sense of humor.  I went eight years without a diagnosis or any medicines to relieve my symptoms and as I got worse and the Doctors kept saying "I don't know," I was still optimistic.  Just before diagnosis, my symptoms were very similar to Muhammad Ali, I was almost frozen like a statue (Liberty, Venus, David?), but I was still alive, whatever I had wasn't fatal, so what was there to be sad about?

Yes, it's a coffin.

Most Parkies take drugs early on, when a tremor is their only symptom and some don't realize they are getting worse, and therefore, don't appreciate how much the medicines are working.  Some even say "I'd have to quit taking them to tell if there is any difference."  I know, absolutely, that mine are helping me AND causing some of my problems.
 

They help my stiffness and shakes, but cause my sleepless nights and 2 really aggravating things: dyskinesia and dystonia, big words that are hard to spell and even harder to pronounce. (Parkinson's Vocabulary)

Dyskinesia is a dopamine side effect and is a jerky, dance-like movement of the arms, legs and or head.  In other words, I wiggle around like Michael J Fox.  I call it doing the "Parkie Disco" and I do a good job of timing the movements to music.

Foot cramp

Dystonia is severe muscle contractions and are also a medication side effect.  In other words, severe cramps that cause your foot to try to turn itself inside out and tend to happen while crossing a busy street!  These have been helped recently by eating bananas and doing stretches, advice I got from a Physical Therapist who took time to visit a Parkinson's Chat Room and answer questions we had (Thanks Barbara G). 

I was going to write a song parody about dystonia, to the tune of My Sharona, but haven't gotten around to it.  Sorry, now you have that song in your head, don't you?  You see, the whole trick is to figure out how to relieve some symptoms without causing worse ones and it's like standing on someone's shoulders as they ride a bike across a tightrope.  It ain't easy!  But it can be done!

Little Bev with watering can

I am lucky, so far, I have not showed any signs of the obsessive /compulsive disorders that plague many who take the medicines (Mayo Clinic - Parkinson's disease and OCD).  Unless, making people laugh is my OCD........nope, been doing that all my life!  So, Don't Worry, Be Happy!  Now you have this song stuck in your head instead!!

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


Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parkie Day!