A Day in my Life – February 15, 2009

Every now and then I fire up my Way-Back Machine (the data that survived my thlrd great laptop melt-down). It's in a file on my desktop labelled, oddly enough, "Karen's Keep". I mine it for gems like this blog entry from nine years ago.

A Day in my Life – February 15, 2009

My typical day starts around 3 or 4 am when I wake up from the pain of restless leg cramps. I get up, walk around a bit, and then I usually work on the computer until about 7. Then the dystonic cramps start, usually when it’s time to get the kids up and ready for school. For dystonic, think “stone”. It’s like human pretzel syndrome. My toes curl under, my feet curl inward, my left arm goes up, my back and neck twist, and my right side goes down. The pain is excruciating. If I am carrying anything like a bowl of oatmeal or a cup of coffee, I have to be rescued.

As soon as the kids get picked up by their carpool, I crawl back to my bedroom (literally!) and pull myself up onto the bed to lie down until I untwist, usually about 45 minutes. If I have managed to make coffee that morning, I try to pour a cup and then push it in front of me while I crawl. Then I have a few good hours when I can work on the computer again, or crochet, or if someone takes me, I can do a bit of shopping. I can walk almost without pain.

Then about 5 or 6 in the evening I start shutting down again. My left side drags. I usually manage to make supper, but the kids have to do the dishes and housework. This is almost more work than doing it myself – just a matter of being emotionally difficult instead of the physical pain of trying to do it myself. I spend most of the evening in bed, and when the kids get to bed around 11, I take sleeping pills to get a few hours of sleep. Then rewind to the beginning of the paragraph and repeat.

Right now it is 4:45 am, and I have been up since 3. My neck is starting to twist already, so hopefully I can get back up the stairs and get to bed. Today is Saturday, so I don’t have to up early, but my body doesn’t let me sleep for long.

It’s not the life I would have chosen for myself, but it does have its perks. My usual line is that if weren’t for the constant pain and the inability to do much of anything, it’s not such a bad life. I get to stay home; I have indulged in some luxury items like a jetted tub and an ultramatic bed that healthy people usually have to wait until they are elderly to buy.

It is amazing to think that I have been living this way since that long ago. I am getting more sleep now that my doctor has found a medication that eases those restless legs at night, and I no longer have to get the kids up and  ready for school. Instead, my mornings now start at 7:30 when my home care worker brings me breakfast in bed. I have discovered that I have fewer dystonic mornings when J get some food in my stomach before I take my 8:00 meds and then stay in bed  until the meds kick in, usually by 10 or 11. And I still say that if it were not for the constant pain and disability, it's not such a bad life.

Parkinson's is such a Weird Disease

Something that people unfamiliar with Parkinson's might not know is that the symptoms are constantly changing. I don't mean from one day to the next, I am talking about from one hour to the next. Most patients, especially those who have young onset (younger than 60) version. Often, the changes from one symptom to the next happen so quickly that an observer might think that it is faked. If only! My days usually revolve around several different symptoms, with a bit of "on" time most days, when I get a bit of a break from pain and disability.

The crazy thing about "on" time is that my obsessive/compulsive nature kicks in then. I try to do a little bit of housework, but soon find myself scrubbing baseboards with a toothbrush. Or I will start to organize stuff. My family hates that, because I will either rearrange the kitchen cupboards, and then forget where I put stuff; or I will sort though stuff (a task requiring the dumping of said stuff) and then when I have it all spread out somewhere, my "on" state suddenly vanishes, and I can't finish the task. I usually end up either leaving it spread out, or I scoop it all up so that next time will be even more challenging.

Once my "on" time is gone, I go into some sort of "homing" state, and I get obsessed with needing to get to my bed. This drives Derek nuts! If we are somewhere other than home, I need to get home. If I am home but in another room, I have to get to the bedroom.

One of the most painful of my symptoms is dystonia.

This is a video I recorded myself of attempting to walk with one foot cramped from dystonia. I never know how long dystonia will last, or how many body parts will be affected. When my whole body is affected, I twist up like a pretzel. It could last ten minutes, or several hours. As I say in the video, I have cracked bones in my foot by trying to walk with dystonia.

Another symptom that I have frequently is bradykinesia. This is a stiffness that makes any movement very difficult. It feels like I am encased in wet cement, including my brain.

Most people associate Parkinson's with dyskinesia: the involuntary swaying movements that Michael J. Fox made famous. I also get dyskinesia almost everyday. What many people don't know is that dyskinesia is actually a side effect of levodopa, which is the main medication prescribed for Parkinson's. Figuring out the dosage is a balancing act that most of us never master, because it is always changing.

Parkinson's is a fascinating disease to study, even when studying it from the inside.

Walking Test -- Failed!

(Videos are courtesy of the Movement Disorder Clinic in Winnipeg, Manitoba, Canada. Used with permission)

These videos are part of the routine check-ups to test my deep brain stimulator (DBS), surgically implanted in 2008. I have been put through this barrage of tests five or six times. I did the same sets of exercises, repeated four times. My DBS programmer Renee called this battery of tests our office calisthenics. In the office, I had to put pegs into peg boards, press buttons as fast as I could, stamp my feet while slapping my thighs, keep my balance while she came behind me and pulled my shoulders back, and then go out in the hall to do this walking test.

1. Off medications/ stimulation on:

In this first video, I am off my medications but my DBS is turned on.

 

2. Off both:

Then, they turn off my DBS and repeat the whole test again. On the day that these videos were taped, I was not able to do the second battery of tests. This is me giving up. My body is doing its human pretzel interpretation, also known as dystonia. My toes are curled under, and they had to rescue me to keep me from falling. I have had several falls at home during dystonic episodes. One time I broke a bone on the top of my foot. I gave permision for my Xrays from that session to be used in teaching physiotherapy students.

3. On medication, DBS off: 

For the third round, I have taken my pills with carbonated water (to make them take effect faster). This video was taken about twenty minutes after the second one, when I couldn't walk!

4. On both:

For the fourth and final round, they turned my DBS back on.

I have a controller for my DBS that allows me to turn electrical leads on the left and right sides of my brain up and down within the parameters set by the technician at the last appointment, and I can turn the unit off and on. I was sternly warned to never turn the unit off.




Three years ago, I was doing up my pill trays for the week, and my hands were so shaky I couldn't pick up the pills. As a last resort, I turned my DBS unit off. Immediately my hands stopped shaking. I turned it back onand my hands resumed shaking. I turned it back off and left it off. I have turned it on only to test now and then, It has never made my symptoms better. I have been keeping my appointments with my neurologist and my DBS technician every three or four years, and they agree that the DBS is not helping. Next week I have an appointment with a neurosurgeon to discuss having the battery removed.

The Saga of my DBS surgery - More Waiting

Part 6 – More Waiting

May 5, 2008. I hope that the hard parts are over now. [I should have known better!] The DBS device was implanted on April 10.  That was an eleven hour surgery that I had to be awake for so that my brain could be mapped out.  Then, a week later, April 17, I went back to have the battery pack installed under my collar bone, with wires tunneled down the side of my head and neck to join the battery to the device. Before I left the hospital, my neurosurgeon turned the device on at a very low setting just so my body gets used to it.

The next step is to wait six weeks to heal before going in to have the device programmed. They do this in stages as well – so I have three appointments in June to get hooked up to a computer. This is a rather amazing medical technology. I will have to avoid magnets (no airport security for me!), for the rest of my life, and always carry a remote control in case the device is accidentally turned off.

You may have noticed that I have not been swaying and squirming as much as before. Apparently the probing done during the surgery before the permanent leads were installed has already had some effect in reducing the side effects of the medication. That benefit is wearing off. I will be taking medication as usual during this six week interim, so I am back to my “Roller Coaster” days that start off with the normal Parkinson’s symptoms of stiffness and painful dystonic muscle cramps, and cycles of dyskinesia (uncontrollable movement) during the day.

This surgery is not a cure for Parkinson’s disease. At best, it will buy me five to ten years of symptom relief with fewer side effects than medication. But perhaps by then there will be some medical breakthrough, so I won’t need a day pass from the nursing home to attend the girls’ weddings. [As of today, those events are still in the future.]

DBS Surgery Done At Last

Originally published on Triond in April, 2008

Part 5 of my ongoing Saga of DBS Surgery

Part 4 ended with me leaving the hospital. I told you about my wonderfully sweet, sensitive, generous Hubby who took me out for ice cream on the way home. I always say that if pain medication does't work, try ice cream. I hope my girls don’t read this. I am still paying for telling them that the best remedy for a sore throat is Coke. They've had a lot of sore throats since then.

In case you are running to your local bookstore to buy a copy of my manual “How to Train a Husband by getting a chronic, debilitating disease”, don’t bother. For one thing, I haven’t written that book yet. For another, even though I say that “Except for the constant pain and the inability to do much of anything, its not such a bad life”, I really would not recommend my method. A while ago, Munchkinette Number The Other One said that she would like to have Parkinson’s when she grows up so that she won’t have to work. Even though they see me every day, it is very hard for them to grasp how the pain from Fibromyalgia (which was diagnosed about 8 years ago) and Parkinson’s is really a bit different than the pain from stubbing your toe. I try not to remind them too often, because stubbing your toe really does hurt and they need Mommy’s comfort and attention. I was rather embarrassed once in a store when the clerk was complaining about a hangnail, and I told her that I have Parkinson’s disease. Now there’s a conversation ender! But it worked out for good – she told me that her brother also has young onset Parkinson’s, so my rudeness led to a deeper conversation.

I have to wait now for six weeks for the incisions to heal before they start to program the device. For now, it is just turned on at a low setting so that my body can get used to it while I wait. I have not had much dyskinesia (the involuntary dancing motion which is a side effect of medication), because the probing done during the surgery has already had an effect. That effect is only temporary, so for now I am taking my medications as usual.

Thank you for all your thoughts and prayers.

The saga continues:

Parkinson’s Deep Brain Stimulator Implant surgery

Part 4: The second surgery

April 17, 2008:

One week after having the deep brain stimulator implanted deep within the depths of my brain (shucks – I forgot to ask the neurosurgeon if he found the loose screw that connects by brain to my mouth), I was back in to have the battery pack installed. I figured that this surgery would be a cinch compared to the marathon eleven hours of the first surgery. Turns out that the second surgery is only easier for the doctors.

Hubby drove me in to the city to be at the hospital at 5:45, which meant leaving home at 4:00. No problem for me, that’s when the pain usually wakes me up anyway. We got there on time (see – I can be punctual sometimes!) and joined the line up for assembly line day surgery. I met Vivian again, with her colourful hat. This time she was there to put me under. No halo this time – Praise the Lord! Apparently some neurosurgeons do the first surgery in two steps as well, which means that that medical device from some evil medieval torture chamber has to be screwed onto the patient’s head twice. Another IV needle was torture enough for me!

The next thing I remember is the trip back to the surgical ward to sleep for the rest of the day. I have a vague recollection of lunch. I told one of the nurses my standard pain med joke: if pain killers don’t help, try ice cream. She was sweet enough to find me some ice cream, but I was so tired I had to get hubby to feed me. It’s been awhile since he had to spoon feed anyone, and I ended up falling asleep with a sticky face. After a short nap, I went back into restless/exhausted mode again.

The pain from restless legs is hard to describe, and codeine doesn't help much. It’s a spring fever of some sort – you spring back & forth, in bed and out of bed, it just hurts too much to stay still. It is a relentless pain, and I am sure it leads to insanity. I probably kept the whole ward awake with my endless pacing up and down the hallway. I know I kept my roommate awake with the constant bed adjusting (why is it that the more restless patients get the squeakiest beds?). 

Around 5 in the morning, a nurse commented that I seemed awfully young to be in so much pain (I'm 42), and then I lost it. I started to cry like a homesick puppy. Then, to make matters worse, I knocked over my pill tray which held a week’s supply of meds while fumbling in the dark to find some Kleenex, so I had to call the nurses back, turn on the lights, and they swept the floor. They must have thought I was suicidal, since they took my pill tray away. I called home, woke up Hubby, and – sweet, sensitive man that he is -  he put my sister in charge of waking up the Munchinettes for school, and he drove in to see me. He got there before breakfast. (If anyone would like to order my manual on “How to Train a Husband by Getting a Chronic Debilitating Disease” it will available in paperback soon – but I’m sure that you won’t want to try my method). We stayed long enough to see my doctor, apologize profusely to my roommate for keeping her up all night, and headed for home.

Hubby stopped for ice cream on the way home. Perhaps you would like a copy of my manual after all.

At Home: The first week after surgery

In hindsight, now that my restless leg syndrome has been diagnosed and since I have been on Lyrica, I now understand why it was absolutely impossible for me to rest or sleep. Back then though, I drove everyone crazy with my relentless walking at night.

Deep Brain Stimulator Surgery

Part 3: The First Week at Home

April 19, 2008

My doctor said to go home and sleep. My brain wouldn’t cooperate. I went into restless/exhausted mode, where I would lie down, but couldn’t get comfy, so I would get up again, and be too exhausted to do anything. I drove hubby nuts. I also was banging into everything, and I still don’t remember how I got some of those nasty bruises on my legs.

All week I was amazed at how calm my body was (except for not being able to rest). The dyskinesia  (dancing, uncontrollable swaying movement) was gone, and the device wasn’t even activated yet! My surgeon explained that this was a brief side effect of the surgery; the brain probes that they do while mapping the brain before implanting the permanent device have a bit of a calming effect for a few days.

I didn’t go out much. I was afraid of scaring people with my reverse Mohawk hairstyle with 18 staples in 2 rows on my head. When I did go out, I wore a scarf. Hubby asked me why I bothered, since whenever I ran into someone I knew, I pulled the scarf back to show off my war wounds. He just doesn’t get my flair for the dramatic.

After one week at home, it was time to go back to get the battery pack implanted. I thought this surgery would be much easier, since I would be under general anesthetic. Well – the surgery itself was easier (for me, at least), but I think the recovery was actually more difficult… Part 4 will describe how I survived (barely) the next surgery.

Post Surgical Daze

This is my second Blogger post of the series that I wrote way back in 2008. I am reposting my original entries that I posted on the Triond web site. I have had links to these articles here on my blog for awhile now, but Triond's links have been inconsistently and annoyingly hard to open.

I am trying hard to resist the temptation to edit these pieces. Some of them were written under the influence of some pretty serious pharmaceuticals. I kind of regret not keeping a copy of the first original version of this piece - the one that Triond rejected because it was too short and incomprehensible (they had tougher standards back then). So this would be the second version of the original series that I wrote for Triond. It is the second post in this Blogger series, but it is part 1 of the original series, since my last Blogger entry was written four sleeps before the surgery, and was not included in the original series. 

I think I am still feeling some of the effects of those pharmaceuticals. 

Parkinson’s Surgery: Deep Brain Stimulator implant

Part 1: Post-surgical Daze

  

April 10, 2008

I was admitted to the hospital the evening before the surgery, so that they wouldn't have to depend on me to be on time at 6 am on surgery day. (Someone must have tipped them off about my challenges with punctuality.) First thing in the morning, they started with the standard hospital routine of poking me with sharp things.  Kudos to the IV specialists at the Health Sciences Center in Winnipeg – every IV needle went in on the first try. They took me downstairs for an MRI, then attached a “halo” to my head. I hope that the halos in heaven are nothing like this. This one weighed a ton, and had to be screwed to my head in 4 places. These screws are only skin deep, but skin hurts! This prevented me from nodding my head, which I soon found out is a deeply ingrained instinct when someone asks a question.

Then they wheeled me into the OR, where there must have been at least 15 people. One team was off to my right, where I couldn’t see because I couldn’t turn my head. I’m told that they were examining my MRI results. The surgical team kept leaving, except for Dr. Vivian, a resident anesthesiologist, who never left my side except for one tea break. She was from South Africa, so she had a cool accent to match her colorful surgical hat. She became my lifeline during the surgery.

Vivian kept herself at my beck and call, so I asked her why the surgical team kept leaving me. She said they had to draw a map of my brain, and to write in the details of what they found. I asked if while they were in there, could they keep an eye out for loose wires. They were mapping out just the right spots to place the electrodes in a tiny part of the brain, only millimeters long. But they never did find the loose wire in the part of my brain that used to be able to do math.

They tested several spots on each side of the brain, and needed me to be awake to tell them stuff like “how many fingers am I holding up?” & “Can you feel this electrical jolt that we are shooting through your body?” By the end of the eleven hours, they were having to wake me up to answer these questions. It was frustrating for both me and them that I could feel the electrical jolts, but couldn’t open my eyes or speak – I could only squeeze Vivian’s hand. My apologies for her bruised hand!  Sometime during the last hours of surgery, my legs started to cramp up from dystonia (Parkinson’s unmedicated extreme – painful muscle cramps that I have been waking up with every morning for a long time), so they gave me enough morphine to knock me out. I don’t even remember hubby and the girls being in my room when they wheeled me back in – about 12 hours after my day started. 

My DBS Surgery Blogs - Four More Sleeps Until Surgery

These are my before and after surgery experience blog posts from 2008. They were originally posted on Triond, and I had posted the links here on my blog, but the links are not working consistently anymore. They say that everything posted on the internet stays there in the cyber ether somewhere, but I think it gets harder to find after awhile. If you have the patience to reload each link 5 or 6 times, click your heels together, and hold your tongue just right, you can get them to load most of the time, but I thought these posts would be much easier to read as a continuing story if I post the entire original articles here. Maybe I could add updates where relevant. Some of the entries may have been  composed while still under the influence of hospital drugs.

Four More Sleeps until SurgeryApril 7, 2008

Greetings to my family, friends, and readers! I said that I would keep you updated on my progress as I journey through this maze called Life with Parkinson’s disease. Lord willing, I will be undergoing surgery on Thursday, April 10, 2008 to have a deep brain stimulation device implanted in my brain. This is considered to be elective surgery, so I have been warned that the surgery date could be bumped if someone with a more urgent condition needs the operating room. My neurologist once had a patient all prepped for surgery, with the halo frame in place, when they were informed that the OR was needed for an emergency surgery. My prayer is that if my surgery gets bumped, it would be before the IV needle is in place.

I have been waiting for this surgery for about two years now, so it seems rather surreal that it is now so close to actually happening! Friends have been asking if I am excited or anxious, and I say YES! The anticipation of fewer medications and therefore less severe side effects is very exciting, but I am also anxious about the actual surgery and possible complications. This is brain surgery, after all! It will be an eight to ten hour surgery, and I will be awake for most of it. They need a conscious patient in order to map out the brain and find the best spot to implant the device. After that, I will be put under general anesthesia to have a battery implanted under my collarbone. Maybe while they are at it, I could have some Borg technology implants just like Seven-of-Nine on Star Trek Voyager. Or perhaps they will find the loose wire in the part of my brain that used to be able to do math. With a tweak here or there, maybe I could finally be able to figure out where the train traveling west at 60 kilometers per hour will collide with the car traveling south that has stalled on the tracks.

All kidding aside, this surgery is designed to replace at least some of the Parkinson’s medications with electric stimulation. Contrary to what Rush Limbaugh and anyone who believes his uneducated slander of Michael J. Fox’s appearance on a TV ad, the uncontrollable swaying movement (my sister has told me it looks almost like I have a desperate need to use the bathroom) is actually a side effect of the medications. This movement is quite painful, especially if I try to control it. My handwriting is hardly legible anymore, and the reason that I am able to type this article is the magic of the delete key, which enables me to eventually create clean copy. Without medication, my body becomes rigid, with overwhelmingly painful muscle cramps and spasms. My days consist of a never-ending cycle between dystonia (painful muscle cramps) and dyskinesia (uncontrollable movement). The desired outcome of surgery is for the DBS device to make the effectiveness of medication more even.

My knowledge of Parkinson’s disease, its symptoms and treatments is based solely on my own experience and research. I have no medical credentials, and I am not endorsing any product or procedure. This is just my story. If anyone reading this is also dealing with Parkinson’s, especially young adult onset, I would love to hear from you.

Update July 8, 2014:

My neurosurgeon was unable to find the loose wires in my brain, and I don't think he even looked into sourcing any Borg technology. But I guess brain surgeons are pretty busy.

The Ups and Downs of On and Off

The Honeymoon stage is over and I am now in the stage of Parkinson's that is called "On and Off" - I know, the technical terms are tough to keep up with. On and Off means that my medications don't work smoothly any more, so everyday I ride a roller coaster of symptoms, usually with a few hours of "on" time where I am almost pain and symptom free.


In the morning, I go through a dystonic stage. This means that my muscles and tendons cramp up - my fingers and toes curl up, my feet turn inward so that it is impossible for me to walk (I used to try to walk, until I broke a bone in my foot), and my whole torso and my neck get twisted. This human pretzel routine can last anywhere from a few minutes to several hours. It is more painful than giving birth without medication, and I know because I did that twice. This is worse.


The thing that keeps me going is knowing that it will end. If I had to experience that kind of pain all day I would be begging my doctor to put me out of my misery. After the dystonia wears off, I get my good hours. Even then, I have to be careful to not overdo it, or the next stage will start too soon. Yesterday and today I had the extremely embarrassing problem of not being able to get to the bathroom on time. Fortunately, I just have to wait a couple of hours,, and then I can clean up after myself. I'm not looking forward to the days when I will have to rely on my daughters or a nurse or home care worker or someone to take care of me.


In the evening, I usually go through a phase that is difficult to explain. I can't stop moving, which is called dyskinesia, but I am too exhausted to do anything. It's emotionally draining, although the pain is not quite as intense as dystonia. Usually the pain gets worse as the evening goes on. With medication, I am able to fall asleep, and then it starts all over again.


I am not saying this to complain about my life, and I don't think that I deserve any praise just because I have a nasty disease and I am still alive. This is just my life right now. It is what it is.

My story, part 4

I ended part 3 with the beginning of my "Walking and Leaping and Praising God" stage. Sorry to anyone who is trying to follow along - I stuck some videos in between parts 3 and 4 of my story, and that part of the story has not yet been told. I intended to put the videos in as a gadget, not a blog entry, but I couldn't figure out how to do that.  


But - on with the story. When I started on the mix of levodopa and Mirapex, it felt like a miracle. I could walk without the cane, and I had less pain than I had experienced in years. I overdid my favourite exercise (aerobic shopping) and got a new injury - plantar fasciitis - and my old knee injury was bothering me, but I had more energy than I had had in a long time. 


I was asked to speak at a women's event in my church, and I called my speech "Walking and Leaping and Praising God". I got my husband (the only man to attend most women's gatherings- he is a sound technician) to play a bit from that song, and I danced just a little. I told the ladies that I didn't know whether I was healed, or if this was just a Divine Reprieve from the pain, but whatever it was, I would take it. 


For anyone reading this who doesn't believe in miracles, it could be argued that this dramatic pain relief and mobility was due to the medical intervention, not divine. That's fine. I believe that every good gift comes from the Father, even when it comes through human hands. 


In highly technical medical jargon, I was experiencing a phase called the "honeymoon period." This is when the drugs are working well enough to provide 24/7 relief. For some people, especially those with young adult onset PD, this phase can last 3 to 5 years. For me it lasted about 5 months. The next phase also comes with highly technical medical jargon. It is called "On and Off." I don't know who comes up with these terms, but at least my spell check recognizes them!

My story, part 3

You may have noticed that it has been awhile since I left off at the darkest point in my life. I tried a few times to continue the story, but I just couldn't get myself to go back there.


So I will just say that I spent about two years in the depths of despair. Any time anyone asked me how I was doing, I would burst into tears. I walked with a cane, and it was very tough to do anything because nothing on my left side was working. I needed my right hand to hold the cane and my left hand was useless.


I went to specialists, and came to the conclusion that medical diagnosis is not an exact science. I went to one rheumatologist who said I had rheumatoid arthritis. He prescribed a bunch of medication, which didn't help, so my family doctor just kept adding higher doses and more prescriptions for RA. Less than a year later, I went back to the same rheumatologist. Now he said I definitely did not have RA, but I did have fibromyalgia. I had researched fibromyalgia, and asked my family doctor about it, and he told me I didn't have it.


I got sent to a pain specialist. After she examined me, I realized that her speciality was inflicting pain. She told me to take a vacation. My doctor sent me to another rheumatologist for a second opinion. Turned out that he had the office next door to the first one, and had pretty much the same bedside manners. He didn't know why I was there when I had already been diagnosed by his partner.


I had been turned down for CPP disability benefits twice, but I kept calling and writing letters. They sent me to a rheumatologist whose specialty was fibromyalgia. He was great, very friendly, and very thorough. I asked him if he would take me on as a patient, but unfortunately he had an ethical problem with treating the patients referred to him by the CPP. He sent them a 12 page report (which I have a copy of). They got back to me and it seemed had only read one paragraph on the last page, where he said that he was not as concerned about the fibromyalgia as he was that I had an underlining neurological condition that he was unable to diagnose. He recommended some tests, but my family doctor would not order them because he didn't think they were necessary. So the CPP turned me down again, citing that their specialist was not concerned about the fibromyalgia, and nothing else had been diagnosed. 


I did get into a physiotherapy class at the Rehab hospital for patients newly diagnosed with fibromyalgia. I learned a lot, especially from the other women in the class. I had similar pain with them, but no one else in the class was having tremors like I had just started having.


I asked my family doctor if he thought it could be Parkinson's, and he said no - he was sure that it was not PD. After another year of me crying in his office because I was in so much pain, and I didn't think I could take care of my children, he finally sent me to the Movement Disorder Clinic in Winnipeg, where Dr. Hobson diagnosed Parkinson's. He started me on levodopa, the standard care med. It didn't help, although when he had me wean off to give Mirapex a try, I had so much pain that I realized that the levodopa must have been helping after all. Mirapex didn't help either. I spent about a year experimenting with various combinations of meds. 


Then, in February of 2005, I tried a combination of levodopa and Mirapex. I starting this combo on a Friday. On Monday, I was shopping at a Christian bookstore. I had left my cane in the van, using a shopping cart for balance. Suddenly I realized that I was walking, without pain!


Soon coming (hopefully): Walking and Leaping and Praising God!