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.

Today was not a good day

Living with Parkinson's disease is never boring! That is the only predictable part of my life. It is never the same disease from one day to the next, or even one hour to the next.

Today was not a good day. I had a severe bout of dystonia - muscle cramps, twisted torso, hands and feet curled inward. It lasted about three hours in the morning. Fortunately my wonderfully handsome and handy hubby made me breakfast in bed before he left for work. He also had to make supper because I also had a nasty bout of bradykinesia - inability to move - that started around 4:00 and lasted until around 8:30. I don't think I had any "on" time today. Most days I get at least an hour of almost pain free existence. Not today.

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.

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.

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.