Friday, October 3, 2014

Broken Ribs Hurt!

Two weeks ago, I celebrated the Autumnal Equinox by having a Great Fall, much in the style of Humpty Dumpty. As I am wont to say, laughter is great medicine but ice cream is better; but there is not enough chocolate ripple supreme in the whole world to replace morphine for the pain of broken ribs.

Very early on Sunday morning, I fell backwards onto the metal frame of my bed whilst attempting to return to bed after a trip to the loo . In hindsight, it would have been much kinder to my hubby to have turned on the light to find my bed at five in the morning, rather than wake him up with my screams.

Later that morning, I went to the ER. They x-rayed my ribs from several angles, none of which showed any fractures. The doctor sent me home with a prescription for Tylenol 3 and Diclofenac Sodium.

The next day, I finally read the product info sheet from the pharmacist; and discovered that Diclofenac is the generic name for the NSAID ingredient in Arthrotec, a drug that I already take. I called the pharmacy, and the pharmacist told me to discontinue the Diclofenac immediately.Since both the hospital and pharmacy have computerized safeguards against duplicate medications, I really have no idea how neither the doctor nor the pharmacist picked up on this error. This was a good reminder for me to always read the information that comes with prescriptions and to ask questions if something seems wrong.

Back to the saga. The details and chronology get a little fuzzy in my brain, but I think it was Monday night that I woke Hubby and everyone in earshot with my screams again. I told him I needed to go to the ER again, but when he tried to help me up, I started screaming again. He called 911, and it took 3 paramedics and a very snazzy wheelchair that can climb stairs to get me out of the house and back to the ER. My ribs were x-rayed again, and once again I was told that there were no fractures and sent home.

Then I think it was Thursday that I contacted my family doctor and requested that he take a look at the x-rays. He called me the next day to say that there were no fractures, and I just needed to be patient and let the bruises heal.

On Sunday, a week after my fall, I went back to the ER and insisted that my pain level was too intense for bruised ribs. I have had bruised ribs before, plus I gave birth without drugs twice, but I had never experienced pain like this before. So they gave in and x-rayed my ribs once again. This time the technician took a good look at the bruises and scrapes on my back, and the x-rays that he took clearly showed at least two fractures.

The doctor in the ER didn't know what to do for me. There were apparently no beds open, and I insisted on staying, so they moved me around from room to room and asked if I would be okay with spending the night in a treatment bay in the ER. I said that would be fine, but  the doctor finally found a bed and admitted me - almost 12 hours after I got to the hospital that morning.

Once they had me, the doctors were reluctant to let me go. My ribs had been "clunking" for a week now, and it took several days of morphine to catch up to the pain. I started to get a bit more relaxed once each dose kicked in, and I finally settled down and let the nursing staff take care of me. I rang the call button whenever I needed to get up. My doctor was reluctant to send me home with a prescription for morphine pills, but the doctor who saw me on Wednesday and Thursday when my doctor was off gave me a prescription on Thursday, and said I could go home if the physiotherapist agreed.

The physiotherapist had me climb a stair and get in and out of bed on my own, and pronounced me ready to go home. I slept well last night, and today the pain is bearable with regular help from my new friend, hydromorphone pills.

The End (for now).

Thursday, July 17, 2014

DBS implant turned on at last!

Here is the last of a series I wrote in 2008 when I had surgery to implant a Deep Brain Stimulator to control symptoms of Parkinson's disease:

June 12, 2008: Yesterday I had my first “programming” session to adjust the settings on my implant. This experience seemed like something out of science fiction (as has this whole process). Renee, the neurological nurse who programmed me, used a remote control device to communicate with the implanted technology. She held the remote over the spot just under my collarbone where the battery pack was implanted. The battery pack in turn communicated with the stimulation device implanted deep inside my brain, with wires tunneled under my skin to connect the two. Renee then used a hand held tablet gizmo which somewhat resembled the medical tricorders used by the doctors on Star Trek. She tapped on the screen with a stylus to individually set the levels of stimulation of eight electrodes, four of which were hooked to brain cells on each side of my brain. The electrodes on the left side of my brain control the movement and sensations of the right side of my body, and vise versa. My Parkinson’s symptoms primarily affect the left side of my body, so she started with the right side of my brain.

As Renee activated each electrode with her tablet gizmo, I felt different sensations over my body. And no, unlike the woman in the TV commercial, I did not smell burnt toast. Mostly, it was like electrical tingling in different body parts. Sometimes my eyes would react and go out of focus, like they do when I try to stare at those 3D drawings in the newspaper where you have to stare until you see a 3D image. After about 2½ hours of this testing, she set the levels and sent me off for lunch. After lunch, I went back, and she showed me how to use my own remote control at home.

So now I can control my own DBS levels, within parameters that Renee set up for me. If I get dystonic (which means cramping muscles, unbelievable pain – where my toes curl under, my ankles turn outward, my arms raise up elbows first and I can’t lower them, my neck twists to the left and down – and I’m grateful because some Parkinson’s patients get these cramps in their facial muscles and that hasn’t happened to me yet), I can turn up the stimulation and get some dopamine flowing. When I get dykinetic (which is a side effect of my medication and results in uncontrollable swaying, dancing movements that my sister says looks like I desperately need to use the bathroom), I can turn down the volume. Either way, I get a quick reaction, which is impossible with pills.

I think I might enjoy living like a Borg (for you non-trekkies  out there, the Borg are an alien race who are part humanoid but have machine parts implanted). I still have Parkinson’s disease, I’m still in a great deal of pain, and it is still very difficult to do much of anything, but now I look cool! (Except for the patch of very short gray hair right on the top of my head and the inch of gray roots that I can’t dye until the incisions heal. Yeah – besides that, I look like a very cool 42 year old mom with my remote control.)

Wednesday, July 16, 2014

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.]

Sunday, July 13, 2014

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.

Saturday, July 12, 2014

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.

Friday, July 11, 2014

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.

Thursday, July 10, 2014

The First Night - Why the Night Nurses at HSC hate me

I remember wondering if I was dreaming but then I woke up to a conversation between the night nurse and the day staff that removed all doubt. I guess I really did do this. Again - remember that I was under some pretty influential pharmaceuticals.

Parkinson’s Surgery – Deep Brain Stimulator 
Part 2: The First Night 

April 11, 2008 – Part 1 ended with the recovery room nurse giving me morphine… my husband and children said they came to see me… All I remember is waking up around 3 in the morning (I guess the morphine wore off), and having the worst case of restless leg syndrome pain ever.  My legs were still dystonic (painful muscle cramps and spasms) from 11 hours in the OR without my Parkinson’s meds. 

I don’t think that the nursing staff understood how painful these cramps can be, or that the only cure is to get up and walk it off. (My neighbours back home know that I can be seen out walking at odd hours of the night.)

I insisted on getting up, and the nurse kept insisting that I was not capable of getting up. It took all the strength I had left to yank off those tight stockings they put on to prevent blood clotting in the legs, and untangling myself from as many of the tubes as I could, wiggling out of bed (with all the rails up to prevent me from doing just that), but I eventually made it up to a standing position. I made it to the bathroom and back, then I fell back into bed with the cramps calmed down at last, and finally fell back asleep – only to be reawakened at 6:00 for the usual vital signs check.

Next episode: home for a week, then back for part 2 of the surgery.

Wednesday, July 9, 2014

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. 

Tuesday, July 8, 2014

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.

Sunday, March 16, 2014

My Disappointment with the Neupro Patch

For the past ten years or so, my Parkinson symptoms have been in the on/off stage. This has been a daily good news/bad news cycle for me. On the one hand, I have a few hours most days when I am 'on'. During those hours, I am almost symptom free. But, during my 'off' hours, my symptoms come back with a vengeance, often literally knocking me off my feet.

My neurologist has been tweaking my medications, very slowly, because I react very badly to fast changes in my meds. I had a deep brain stimulator implanted about six years ago, and that was supposed to help me to even out the symptoms, but unfortunately, it made the on/off cycle worse.

So I was quite eager to try the new rotigotine patch, sold under the brand name Neupro. My neurologist thought I would be the perfect candidate for this new drug. It comes as a patch that releases an even dose of the medication.

Rotigotine is part of the same class of meds as Mirapex and Requip. I have been on Mirapex for more than ten years. The main side effect for me has been a sort of dyslexia, where I need to reread a passage several times, and I fall asleep while reading. This has had a serious impact on my life, because I love to read, and was a librarian back in my prePD days.

I tried Requip for a month. It seemed like my brain was less foggy and the dyslexia eased up, but my tremors and muscle weakness were worse. I had to choose between not being able to read and not being able to walk, so I chose mobility and went back on the Mirapex. Mirapex has been shown to lower impulse control, causing a gambling problem as an actual side effect. I have blamed my shopping addiction on Mirapex, but my husband (Derek) assured my neurologist that I had that before PD.

I have always had a problem with falling asleep. When I went to a sleep lab, the test showed that I was waking up an average of 19 times per hour, and that it was my leg movements that seemed to be waking me. I was diagnosed with restless leg syndrome. I also have fibromyalgia. I saw a TV commercial for the drug Lyrica, so I asked my doctor if I could try it for the fb pain. A very pleasant surprise was that my restless legs settled down. 

When Neupro was finally available in Canada, I switched it for Mirapex. I had more muscle pain than usual, and didn't sleep well the first night. Then on the second night, the restless leg syndrome came back with a pain that I would classify as at least a 10 on the pain scale. It was a desperate pain: I couldn't stand, sit, or lie down for more than a few minutes at a time. I tried calling my neurologist around 3 in the morning (I only do that when I get desperate), but his service didn't get the message to him until about 8:00. In the meantime, desperate for some sleep and out of my mind with pain, I took a handful of pills - about 6 sleeping pills, a few muscles relaxants, and a few T3's. I woke Derek to tell him, because after I took the pills I felt guilty in case it was enough to kill me, and it was the day before Valentine's Day. I think I also took some Mirapex. When I finally fell asleep, my neurologist called, and my daughter didn't want to wake me. (Before Derek left for work, he woke her up and told her to look after me).

When I finally talked to my neurologist, it was 5 pm. He told me to just go back to the Mirapex. 

Derek wanted me to give the Neupro another try. I had tried the 2 mg patch, and he thought maybe a higher dose might help more. So I tried again, but for less than a day this time. As soon as the muscle pain started again, I pulled off the patch and took Mirapex.

It has been my experience that I never know how much a drug is helping until I stop taking it. So if any good came from this experience, it is that the Mirapex does actually help me a lot more than I thought.