Life With Parkinson's in my 40's- #24 PD- Doctors don't understand it

In the past year, I have learned much about the diverse nature of the medical community. Included in this group are doctors of general practice, specialists, nurses of every rank including the kind who take you to your little cubicle to wait for the doctor and take your blood pressure and temperature for the umpteenth time. Actually they aren't nurses but medical assistants. Then there is the nurse who is on duty should you need a non emergency injection of some kind. And last but not least the hospital nurses which I categorize into two groups; ER and floor nurses. However, the triage nurse plays a vital role in some instances. Unfortunately I have become familiar with this world because of my very frequent visits; two to three times a week for an entire year; maybe a bit longer. I've had very positive experiences with doctors and nurses and I've had nightmare horror story experiences.

I'm not one to bash anyone who is trying to get through life like I am. I don't believe in law suits. But I do believe that we each need to be accountable for our actions in this life and how they affect the people we come in contact with and/or are responsible for at any given moment.

Living with Parkinsons at a young age has been a challenge in and of itself. When you add to PD, a severe back injury (ruptured disc), a constant, hemorrhaging uterus, and chronic migraine headaches it does not make for an easy time. I was seeing my primary physician, a neurologist, a back pain intervention doctor, an ob/gyn, many, many ER doctors and Physician Assistants, eventually a neuro-surgeon and a chronic pain management doctor.

I love my primary physician. He's a sensible, intelligent human being who has always treated me with dignity and respect and never tried to diminish my pain. The intervention doctor called me at home, got me an emergency appt to see a neurosurgeon whose office is 1 1/2 hours away. He in turn was compassionate and scheduled my surgery for 5 days from the day I first saw him. My ob/gyn tried every method known to help my diseased uterus and had complete trust that I was doing what she asked and after some time had passed with little improvement, we decided the best and last choice available was a hysterectomy. The chronic pain doctor helped me to understand how the brain and body perceive pain and how it needs to be helped when the acute situation is gone but the brain doesn't realize it. He prescribed pain medicine in such a way that left me with dignity and still controlled my pain.

These doctors worked together, often consulting one another about my very complicated situation. Some of them didn't always listen unless I got in their face, so to speak. I'm not afraid to state what I need and what they are not giving me. Eventually, I got what I needed and I am finally stabilizing although I still have daily pain from a 'nerve scarring' in the sciatic nerve on my right side.

How has Parkinson's affected these circumstances I have just relayed? WEll, unless I haven't had my meds, have a bad virus, infection or am seriously emotionally stressed, most people cannot tell I have Parkinson's. And when I tell them (I'm talking about the medical community now) they have a hard time believing me. But it's in that computer and the files don't lie so they finally accept it with witheld skepticism. No matter what I tell them they cannot understand what it is like to have Parkinson's and deal with other health issues as well. Even a neurologist has no idea how a PD patient really feels or what they go through every day.

Time and again as I found myself in yet another ER bed, another hospital bed, another doctor's office, or pharmacy, I would have to rehearse the same information again and again to make them understand that I am different because I have PD, I cannot just take any medication, just any vitamin, just any antibiotic. Oh, yea, and I'm allergic to latex! Now that's a fun one.

I learned the ins and outs of narcotics, the doses, the names, the accompanying drugs I would need to counteract the side effects of the narcotics. I was in so much pain at one point that without the pain medicine, I would have gone insane; literally. I am thankful for it. But, I had very little formal training from any doctor or nurse about the dangers of long term use and the high doses that I was on for some months. It all affected my Pd and my PD affected the meds, etc., etc.

About a year ago, I found myself in Pennsylvania at a clinic for PD treatment. It was a research clinic working with IV treatments of phosphatidyl choline and sodium butyrate and glutathione. I was there for two weeks, alone. While I was there I got two major migraines; this would happen at the change of the barometric pressure. The second visit I made to the local hospital there for pain relief from the horrors of these headaches; unlike any pain I've ever felt, I came across an arrogant, young doctor who happened to be on duty in the ER. My aunt lived in the area and had taken me there so she was with me but didn't know anything about what I needed. I told him the usual protocol that worked for my headaches (it had been six months of headaches and pain shots without a proper headache diagnosis or treatment plan). He didn't want to hear it. He had a 'pet' drug that he insisted would work better. He was anxious to see it work. So I took his word and consented to a treatment that I had never studied or researched (as is my way). It was a drug called compazine. It is for schitsophrenia and/or headaches according to him.

How you have to know more details about this fateful day. I was due to catch a plane back to California (3,000 miles west) at 6:30 am. It was 2:30 am when I received the drug. It was administer as a bolus which means the undiluted medicine was injected into an IV right at the site without any fluids. They left me alone with my sleeping aunt to let the drug work. I proceeded to have the most monstrous experience in my life and I've had a lot of horrible physical experiences. I had dozens and dozens of people in my head talking, I felt the sensation of my skin boiling and bubbling and I smelled like the dead, like formaldehyde. It deadened my neck muscles and my tongue. And the most torturous side effect was it heightened my PD symptoms beyond what I had ever experienced. But....my headache was gone.

They unplugged me, had me sign the papers you sign, and shewed me out the door. My aunt and I went back to my hotel and fell asleep. Neither of us heard the alarm go off that would have allowed us time to get to the airport on time. I woke up for some reason, woke up my aunt and we hurriedly (in slow motion) got everything in her car and on the way to the airport. As I checked out at the desk, I could only mutter one syllable sounds, I could not legibly write my name or even smile. I was literally a zombie. We got to the airport with only minutes to spare. My luggage was overweight and the rude luggage check clerk ordered me to rectify it or my luggage wasn't going anywhere. I could barely move, let alone rearrange my luggage contents with a line of people watching. Somehow I managed it with my aunt's help. Then there was the security checkpoint. It was a chilly 30 degrees so I was layered with a coat, scarf, gloves, the works. Well, you all know what you have to do at the security checkpoints. It all had to come off. I could not move my hands. AN angel was with me then because as I waited for nearly ten precious minutes to get through, I again managed to get all outer layers, including boots off and in trays. Nearly in tears, yet unable to cry I started making my way to the ever distant gate. I was dragging my left leg, my neck unable to steady my head, my tongue still numb. And my vision was so blurry that I could not read the signs I passed- big signs. I finally accidentally saw my gate. They were boarding. I was in the last group and got to the line just as my turn came to board. I found my assigned seat which was, praise the Lord, by a window. I don't know how I got my carry on up in the bin but I did, I sat down, leaned over on the window and I was out for a good hour. I slobbered in my sleep.

When I woke up, my feet were numb with cold, I still couldn't hold my head up or see anything clearly. There was a jolly couple sitting next to me who were on their first trip to Hawaii and wanted to tell me all about it. I politely slurred to them that I was sick, although not contagious, and that I would not be talking too much. Then I went back to sleep.

Three torturous hours later, the plane landed in Texas (my layover) at the biggest airport I'd ever seen. I was humiliated at my appearance and stumbled off the plane into what was a small city within an airline terminal. Wall to wall people, a tram that circled the perimeter of the entire airport's some 150 gates. I had 4 hours to wait for my connecting flight. I wanted to cry but still couldn't. I was so hungry so I looked for an empty seat in the restaurant that happened to be in front of me. It was the breakfast hour and the place was packed. I eventually was seated by myself just inside a half wall seperating the terminal walkway from my table. People whizzed by running for a plane or to fetch their luggage. Around me people were talking and eating. I was the only one alone. I was so alone. "I'll call my husband", I thought. "I'll feel better just to talk to someone from home." As I waited for my veggie omelette to arrive I dialed my husbands work phone. He didn't answer; got his voice mail. I started to leave a message and before an entire sentence was completely out of my mouth, I finally began to cry. I immediately attracted the attention of the couple across the 2" aisle. I turned my body toward the half wall and walkway and finished my sobbing sentence. It was then that I realized it was Sunday. My husband was not at work, he was at church with our daughter. So much for talking to someone at home. My omelette came and I devoured it. After I ate I felt a little better but still mostly like a zombie. What would I do for another 3 1/2 hours. Got out my mp3 player and it promptly went dead. I strolled or should I say shuffled around squinting to see where I was going. Lo and behold, I came upon a blessed sight. There before me was about 10 cots all together in a little area by a wall for people to sleep on; beautiful. I had a little blanket in my case. I lay down, covered up and was out for about 45 minutes. I pulled the blanket over my head as I dozed and cried myself to sleep. When I woke up I checked the time and headed for the departure board to check my flight. The gate had been changed so I had to figure out how to get back on the tram and travel to the other side of the 'city' standing up. At every gate, the automated tram stopped and a computer generated woman's voice announced the fact that we had arrived at yet another gate and be sure to keep clear of the door and hold on to something as we took off. I must have heard this message 20 times before I got to my stop. Finally, I was boarding my final plane home. I got a window seat again. I still couldn't hold my head up very well or talk but I felt somewhat stronger. I was only 3 hours from home. I enjoyed the scenery of the southwest landscapes; the grand canyon area, Arizona deserts and finally the Sierra's. The plane flew over the complex where my husband works in Livermore, flew over all the thousands of windmills near there. It seemed an eternity before the plane landed and I actually got out of the plane. Waiting for me was my husband and daughter. I was never so thankful to see them as at this moment. I cried for ten minutes. On the way home, I explained to my husband about my experience and what the drug had done to me.

The next day, still unable to talk very well or see clearly or swallow, I called the hospital in Pennsylvania and got the chief of medicine on the phone and told him how negligent the ER doctor had been administering compazine to someone with PD. He was horrified and I think, fully expected me to sue them. I went online and researched compazine and found that Benadryl would counteract some of the effects. It also said that a Dr. should never administer this drug, compazine, as a bolus but with fluids on a slow drip. I got a bolus. They hooked up a bag of fluids then never opened it up. It hung there for two hours without my body getting a single drop. But I got the compazine. Whammo! Bammo! I can still feel my skin boiling....ooooh. It took nearly two weeks for me to completely find my speech and swallowing abilities again. But it has never been the same since and it has been a year and a half.

I told the doctor in PA that I didn't believe in law suits but he better be darn sure that ER doc never uses compazine on anyone with PD again. Now the thing is that he knew full well that I had PD when he gave it to me. IT was right in front of him. He knew. One of the biggest warning side effects of the drug is that it causes PD symptoms. Now that is not too hard to understand.

Doctors do not know everything. Doctors do not know a lot of things. They are not always right or sensible. They make mistakes, they are tired from working too much, or they are just plain arrogant and stupid.

On the other hand, as I stated above, I have come across many doctors that have been my saving grace and I am thankful, oh so thankful. But all it takes is one bozo to ruin your life, your brain, your body, your future. Luckily, I am still kicking, swallowing, talking, and even dancing but not because of the Compazine man, because of my own stubborness and will to be normal again.......somehow.

It's a hard thing to ponder....doctors. Can't live with them, can't live without them. So what I have decided is that I never take a doctors word for anything until he or she has proven to me what the treatment, drug, or procedure will do to me and for me. I asked a hundred questions, literally. I do it in as friendly a way as possible. I am just as intelligent as a doctor, I just don't have a list of prescription drugs memorized. I don't have the experience they have of seeing different patients with different illnesses, injuries, etc. but I do have the experience of living with my body, my illness, my life, my family. I know what I need. It's been an education of sorts. I'll never look at a hospital or a doctor again without scrutinizing everything I see. It's ok. We live in a free country, in the 21st century. Women can vote now. WE have the intelligence and the technology to research and communicate with anyone over the internet or a cell phone. We don't have to guess or take someones word for anything when it comes to our health, our brains in my case or our precious bodies.

As I said, I have an excellent team of doctors whom I am seeing less and less of, thank goodness. Still, however, there are more stories to be told, even of these well meaning doctors. THe hysterectomy experience.......another day perhaps. Right now, I am content to listen to daily hypnosis and affirmations to keep my anxiety levels down which in turn keeps my pain levels down which makes for a better day. I am an expert on just how much physical exertion my back and legs can take before bad things start to develop. So I maintain my minimal level of exercise, I take a minimal yet effective dose of pain meds and my PD meds and I do pretty well.

It is a cycle that can never be forgotten. A small break in my chain of self treatment items and I am back to square one; pain, worry, more pain, sometimes depression. But I am learning how to catch things before they escalate and it is quite amazing how much power I have to control my pain, therefore, my life.

Still,....I send out my warning to people like me. Doctors do not know everything. Listen, think it through, research, second opinions, more pondering. You have control of your medical decisions, not the doctor; though they mostly mean well. Unfortunately, well meaning is not synonymous with what's right for you all the time.

I feel fortunate to be alive. I really do. Kind of amazing the things I've survived at the hands of 'professionals'. So I am sharing my thoughts since I am still around to do it.

Thanks Doctors and I also have to say no thanks to some of you. The next time you see a patient who says they have PD, be still and listen. Then go do your homework before administering drugs. Please. Because doctors do not understand Parkinson's, only the PD patient understands it, maybe. AT least I do, I think.....

Life With Parkinson's in my 40's- #22 Dancing, Life, and the World

From Margie Gillis-

"Dance and its contribution to what is humanly possibly and what is health holds a place of honor in me.

I feel, it seems, incumbent upon us to find ways to keep alive the necessity of danc's contribution to society and to find a way to allow the public to know what is there in truth; that they themselvles, and their world of what is real and possible, is illuminated by being with us and supporting our work and research."

Dance is a universal human behavior."

Dance is the direct communication through nature of our human experience."

Dance, like nature, is a necessity and is sadly undervalued by society."


Oh Lord, don't move the mountain. Teach me how to climb.
Oh Lord, do not remove my stumbling blocks, but teach me to go around.

Life With Parkinson's in my 40's- #21 Dancing Queen or Healing Queen

I have had another wonderful insight into my own strange world of PD and dance. Over the last 8 years of struggling to control my body's movement, I have always known one thing and only one thing for sure; well about PD anyway. And that is that when I dance the PD becomes far less evident. Now, I know some of my spectators whether dancers or not have been very skeptical either about the fact that I even have PD in the first place because let's face it, typically PD patients don't dance??? And secondly that I really couldn't change all that much physically just because some music is on and I do some dance steps. I know there are some well meaning people of my acquaintance whom I attend church with who think I'm a little nuts because I claim to have PD and I claim to be a ballroom dancer and instructor.
Well....I have just met a lovely man with PD who found my writings and is quite excited about another PD patient who can dance! I found out through him that they are actually doing a study on PD patients and dance. They are mystified that music could heal, mystified at just how this could happen. These are neurologists. Why is this so hard. It's a no brainer (little pun there)! Music is recognized by a different part of the brain, it triggers positive emotions and chemicals that affect the PD symptoms. Dancing keeps the physical body healthier, muscles, etc. If you search my blog, you will find video's and pictures of me dancing.

My next door neighbors used to be a sweet Italian couple in their 70's; loved each other dearly. The wife had a stroke and couldn't speak any longer and was put in a care facility. Her daughter told me some time later that her mom could not speak but she could sing! Same concept.

I have been listening to positive affirmations and a self hypnosis script on headphones for about a week now. This is a communication to my subconscious that has been trained over a lifetime of 40 + years to feel certain emotions because of tramatic events when I was young. All of us have these tramatic emotional experiences in our brain somewhere. Listening to headphones allows a certain part of the brain to process what we are hearing differently than from a radio or from a cd. My dancing (music is a big part of it)and the self-hypnosis tape is changing my PD rapidly from severe to hardly any symptoms at all. Why? Because I am reaching the inner parts of my brain where the memories are harming me and I am reprogramming, making new neural pathways. Yes, it is possible! My neurologist doesn't want to hear it but it is true.

Now, mind you, I am still taking my PD meds but most Pd patients even with meds cannot function to care for themselves completely- so frustrating!!!! If I eat correctly, get good sleep (a hard thing with PD), do my meditation and hypnosis, and....DANCE I maintain a 'slowly improving' status pretty consistently.
There are a few doctors out there who believe this though I don't think any of them are neurologists! I'm sorry to all you neurologists who have studied and studied and really think you know best; you don't. You are too wrapped up in your profession to see the real picture. I am very blessed to have a doctor who sees the real picture and I thank the good Lord for him every day.

I stopped talking about this because I was talking to the wall and the air and my walls and airspace were all taken up with it. Now I know someone else is listening.
To my new PD friend who dances to move, see you on the dance floor!

*By the way- The song "The Dancing Queen" by ABBA is a great tune to do the samba to. We've just been teaching the samba to this song this very evening. I got home and read about PD patients who couldn't walk but they could move to the music of ABBA. Fantastic!

Life With Parkinson's in my 40's- #20 Destination..... Dreams

I came across this song today and it brought back some positive memories. When I have such vivid and sudden remembrances I take it as a prompting to share.

The music alone stirs me. The lyrics are food for much thought. So here are my thoughts-

We are each on our own journey. We have been equipped with tools to help us along the way. We each travel on or in our own vehicle of sorts. The roads are many and diverse. Our destinations? Who can tell; only our own heart. Our true heart.

This song speaks of the 'Southern Cross'. Wikepedia describes the 'Southern Cross' as 'a distinctive winter constellation of the southern sky shaped like a cross. It appears in the flags of several countries in Oceania. A few of the countries included within Oceania are Fiji, Tonga, Samoa- just a few.

The song speaks of a journey aboard a ship on a calm, cooperating ocean. Memories, ego, and pride seem to get in the way of this journey's most desirable outcome. The way is before them, they see the way, yet they cannot seem to grasp it.

My favorite part of the song is-

When you see the Southern Cross for the first time
You understand now why you came this way
'Cause the truth you might be runnin from is so small
But it's as big as the promise - The promise of a comin' day.

So I'm sailing for tomorrow- My dreams are a dyin'.
And my love is an anchor tied to you - Tied with a silver chain.

I have my ship and all her flags are a flyin'
She is all that I have left- And music is her name.

Think about how many times I have fallen
Spirits are using me larger voices callin'.
What Heaven brought you and me cannot be forgotten


For me 'The promise of a comin' day' is a huge stimulus to go on.
I'm sailin for tomorrow but my dreams are growin.
My love is an anchor, yes, so many good people to love.
My ship is so many things- music, dance, family, friends, God!!
I have fallen many times but somehow I'm still moving.
I listen to the spirit and God's voice.
What Heaven has brought you and me I will certainly never forget.

What has Heaven brought us? This is for your own reflection!

Pleasant Sailing!

Life With Parkinson's in my 40's- #19 Computer Frustration, Fact or Fiction

I am growing more frustrated by the day!! My computer is the culprit. How much do we rely on our computers to keep our minds occupied? What did we do before everyone had their own computer?

Well, our OLD computer kind of crashed and burned this summer. My wonderful husband has resurrected as much of it as he can. It works and it doesn't work. I cannot attach pictures to anything without freezing up everything. I am going through withdrawals for my pictures. I've sat in front of my screen wanting to scream, I don't know how many times. So, for now 'computer frustration' is fact. I'm hoping to turn it into fiction in the near future. Meanwhile, my camera is still clicking and shooting.

Being at the computer for long periods is not beneficial to my health; or rather my PD brain. It tends to make me foggy, tired and yes, mad as all get out- grrrrrrrrrrr!
And we all know how much a new computer costs even with a techy husband.

In the early days of computers, I worked in an office that had a cartoon sign pinned up next to our work station which had a picture of a crazed, angry woman holding a giant mallet over her head and the caption said, 'Hit Any Key'! I think it was me.

So, I am in mourning until I....... what? I am in mourning. -for my pictures stuck in my computer. I'm just in mourning, grieving. They say you should not hold these things inside. So I'm doing my best to get it out. Is it helping your computer frustration just reading about mine? Dumb question.

So, no pictures with this ranting. You have to use your imagination like we used to in the days before (shhhh), the 'c' word. Pray for me and my 'c' and my pictures. Silly you say? Not silly, imperative! But in the meantime, I will try to remember what it was I did before I became attached (literally) to this phenomenon we call 'personal computers', 'blogging', 'graphic design', 'digital photography', 'websites', and on and on and onnnnn........

I think it is called something like uhm,,... housework, no that's not it. Maybe it's yardwork, no that's not it either. Could be cooking dinner or reading a book. I don't know. It will require some serious pondering. Wish me luck.

There is always hope right? If I can keep a handle on Parkinson's then I think I can probably figure this one out.....sometime, somewhere. I just wish it were today.

Life with Parkinson's in my 40's Post #18- My Quest; Finding Joy in Others

This is Jim and Mary Chappell. They are good friends we have come to know. We met them when they moved into our ward. For those of you who don't know what a 'ward' is; it's the geographical boundary that constitutes our Sunday congregation in the LDS church. My husband and I have a lot in common with them. I knew they were special right away. They exhibit a zest and love for Christ and for their lives and they share that 'light' wherever they go.

In my healing process I seek this kind of love and light or 'pure joy'. I recognize it because of how my body responds in it's presence. When I am with the Chappells I am well. Even their name- Chappell, brings to mind a feeling of peace. I have been influenced so deeply by their simple sharing of who they are that I wanted to pass along their love to you.
Jim is a gifted musician. He wrote a song after his conversion to follow the Savior. Their story is he sang it to Mary when he proposed marriage to her. They sang it at their wedding reception. Mary has a lovely voice as well as Jim. The first time I heard them sing it was at a ward party. I was so appreciative of their talent and openness in sharing it. I asked them if I could film them. They agreed.
My recording is with a simple digital camera and the sound is not a high quality recording but you will feel the spirit of the song and the people nonetheless.
Remember, Jim wrote this and he used no music when playing it. What would this world be like without music and good friends like the Chappells.


This was taken at our ward Christmas breakfast in 08.
This was at the flag ceremony at the combined wards July 4th breakfast this year.

More Summer Fun with Ariana

Well, our summer together has come to a close. It was a relaxing, peaceful summer; probably too peaceful for Ariana but she didn't complain. We went on day outings or even just 2 hour outings whenever I was feeling able. Otherwise we watched a few movies, did projects at home and did a lot of reading.

Ariana is sporting her new Converse shoes. She got a pair of brown Converse and plain white athletic shoes. Her new school (Aspire College Preparatory Academy or ACPC) has a strict dress code even for shoes. She had to have solid colors and she wears shoes out fast so she got two pair.


On our shoe shopping day, she took a picture of me at the bank. Not my most photogenic side.

We paused outside the Vintage Faire Mall to watch these cool fountains. They finished a beautiful, more modern addition to this mall not too long ago. This is part of it. Can you see the little fountain spouts in the air? Ariana was annoyed that I made her go and pose.

We spent a few different days at the Johansen High School swimming pool. I learned from a friend that they don't use chlorine in their cleaning system but a saline system so the water doesn't bother me. All the other school pools and city pools are closed down due to the economic crunch of our city.

These toes belong to Ariana, and Annie and Sarah Hardy

Trying to crunch everyone into a self-close up is always fun!