Thursday, August 4, 2011

Seven things I hate about Parkinson’s disease

#7 – Retiring at 35. Some people might think it would be a good thing to leave the work force at the age of 35, and there are times when I would agree. Except for the constant pain and the inability to do much of anything, yeah – not having to get up in the morning and go to work is kind of a perk.

#6 – Not being able to do housework. This one sounds a bit like a perk as well. The problem is, I would like for the house to be clean. Clutter screams at me, especially when it is not my clutter. Clutter barely whispers to Hubby, and I don’t think that the kids hear it at all. This is my punishment for always being in a hurry when I was healthy – I had the “It’s faster and easier for me to do it myself” attitude. There is a window where the kids want to help, but their help is actually more work for Mom than doing it myself. That window closes, snaps shut really, without any warning, and then the window in which they are perfectly capable of helping but they don’t want to opens up, and that’s the window that stays open forever. Or at least until they grow up and have families of their own...
(I need to add here that my girls are helping a lot more now – they don’t volunteer their services, but they can be bribed. Cash is good.)

#5 – “Restless and Exhausted. I hate it when I am too restless to stay in a chair or in bed, but I am too exhausted to get up and do something. This is a dichotomy that causes insanity.

#4 – The constant vacillation between “on” and “off.” I know – the medical jargon is rather tricky to navigate. “On” refers to the state in which my medication and whatever it is that the deep brain stimulator implant does, and you wouldn’t even know that I have Parkinson’s. “Off” is when my brain/body connection is severed, and I go though one of the various states of being that I have come to accept as normal.

#3 - The loss of impulse control. This is apparently a side effect of one of the medications that is helping me to be able to walk when I am “on.” This medication has been shown to create or exacerbate gambling addiction. I am blaming it for my shopping addiction – especially since I have discovered the joys of online shopping. I also had to notify the drivers’ license people that I am on this drug, which led to #2...

#2 – Loss of my drivers’ license. This has seriously hampered my shopping addiction, driving me to the underground world of online shopping, that miry pit – such a tantalising enticement – I just order stuff and they bring it to my house...and:

#1 – The number one thing I hate about Parkinson’s disease is the isolation that it brings. I am not even going to church because of the dystonic muscle spasm attacks that I experience almost every morning. The only thing I can do during these attacks is to lie in bed (if I am lucky – otherwise the floor) and just wait it out. Sometimes they last a few minutes, but often a few hours. A group of my friends from church invited me to go for breakfast with them one morning, and I really tried. One of the ladies came to pick me up and I managed to get dressed and put on make- up, but then the spasms started again. They only lasted only a few minutes, so my friend waited, and then I got up – and they started again...twice. I eventually had to give up and just stay home.
And now my voice is affected, so that sometimes my speech is halting, and sometimes it is gone altogether. This makes phone conversations almost impossible; especially when I call my friend who also has Parkinson’s and has the same problem with her voice. Our conversations would be hilarious, if they were not so exacerbating.
That is my rant for today. Thank you for reading. I must add that the symptoms come and go, in a daily cycle, and most days I have several hours when I have hardly any symptoms at all. But it is a nasty disease.

Friday, July 15, 2011

Vacationing with Parkinson's: Is it worth it?

Guilt, guilt, guilt! I had been feeling guilty and a bit frustrated that we had never taken a family vacation. Derek  isn't into travelling, and I am terrified of making plans. But Kalene is going to be 18 this summer, and going off to college and life, so I told Derek that we had to "just do it" this year and plan a family trip.
Derek did an impressive job of finding a resort, booking flights, reserving a rental car, and so, the day after school ended found us on an actual airplane on our way to Montreal!
I was anxious about getting dystonic the morning that we had to leave, and so of course I got dystonic the morning that we had to leave. Derek was a trooper about getting everything into the car, including me; and we got to the airport on time. I was apprehensive about going through security with my DBS, and I had my "get out of airport screening free card" at the ready, with the warning from several sources that they would do a "pat down" instead. I needn't have worried. No one even looked at my card, and as soon as I said I had a brain implant and a  battery in my chest, they treated me like royalty. The pat down wasn't so bad. There was no groping involved. We didn't request special assistance, but they put us on one of those little cars to get to the gate, and then a very nice Air Canada employee put me in a wheel chair and wheeled me through the line up with a "make way, coming through" attitude and told me to never apologize for needing help.
I was surprised at how much I was able to do with the family on our holiday. When motivated with permission to shop, I am surprisingly mobile. I dragged Derek through a mall in Montreal to show him a dress that was just soooo cute, and I bought it. It was on sale for $54.99, with a regular price of $75, so with the $20 I saved I also dragged him to the jewelry kiosk where I had found just the earring and necklace set that I've been looking for, and it was only $22.00!
We went through almost all of the local tourist traps, and managed to find all of the bakeries, the chocolate shop, the Sucre d'Art (known in English as the Sugar Shack) where we learned how maple syrup is collected and turned into all sorts of decadent toppings and cooking sauces. The Sugar Shack and the Musee de l'Abeille (Museum of Honey) included free tasting tours. The map we were given was not drawn to scale, and the distances between attractions was much farther than we thought. We met a couple at the chocolate shop who had just been to the Sugar Shack, which we couldn't find. They were trying to follow the same map.
This blog entry is getting much longer than I planned (surprise, surprise!), and as I hunt through the brochures of the places we visited and the receipts of all of the souvenirs, the restaurant receipts -I think I have answered my own question. Yes, it was worth it. There were a few rides I wanted to go on but could not, Derek had to push me in a wheelchair through the Aquarium, and at the Ste. Anne Canyon, I couldn't finish the trail, so Kalene and I went back to the restaurant and had ice cream.
I did get dystonic again when we were packing to leave the resort, but we were on time to return the rental car and we got through the Pierre Eliott Trudeau airport again, and got home in one piece. I don't think I will be planning another trip anytime soon, but, yes - it was worth it.

Sunday, June 12, 2011

Parkinson's and Exercise

This is absolutely my least favourite topic to discuss. When I was healthy, especially at the height of my fitness, I really didn't have a lot of compassion for people with chronic illnesses whose health would be much better (according to those wonderful, all-knowing, anonymous folks known as "they") with even just a little regular exercise. 

Sure, I could understand that exercise would be difficult, maybe even painful, especially at first, but if they stuck with it they would get stronger and their lives would be so much better. People who give people with chronic illnesses advice like this ought to be stricken with their own chronic illness so they can develop some compassion. 

And this is why I have Parkinson's disease now. (I'm just 81% kidding!) I don't believe in karma. I do believe in God. But I would never tell someone that God will strike them down with some horrible disease because of something they have done. But, today's topic is not "Why bad things happen to good people?" So back to my least favourite topic: exercise. 

I have written a few Triond articles about my theories on exercise: Physiotherapy in the shower Fitness through clumsiness,  Shopping as a sport, and Housework as aerobic exercise.

I've been writing about how the Parkinson's symptoms I experience come and go from one hour to the next, and how most days I have a few good hours - usually in the early afternoon. When I am "on" I have all the vim and vigor of a normal person twice my age. I would love to go walking (or shopping!), but I am afraid to go by myself in case my muscles cramp up. I also don't drive anymore. 

I used to enjoy going to aerobics classes, and I even did aerobics with a video tape in my living room quite faithfully when my girls were little. So when a friend of mine asked if I would be a guinea pig for her as she takes her training to be a fitness instructor, I schizophrenically agreed, second guessed myself, agreed . . .

So my friend brought her mom and we had an aerobics class in my basement. Shockingly enough, I managed to keep up and I made it through the class! Even more shocking, I feel fine today. (Well, fine as in my base level symptoms and pain.) We agreed to try it again next Saturday. I'll let you know if I survive. Maybe I should listen to all of the healthy people who keep telling me I would feel better if I got some exercise. 

Saturday, May 14, 2011

Good and Bad Days

I usually say that I don't live one day at a time ~ I live one hour at a time. My symptoms change from one hour to the next, as I described in my last post (ups and downs), but lately I have definitely had some days that were much worse than others. I will have a couple of days with just my "base level" pain, and no major times of dystonia or dyskinesia. But the last few days I have had several bouts of each. Last night I had about an hour of full body muscle cramps so severe I could hardly breathe. I had to wake up my husband and he helped me to calm down and breathe.

My husband is taking on more of the cooking and cleaning. This hasn't been easy for him ~ I sometimes wonder which of us has a more difficult life, me with the pain and disability or him with having to take up the slack. My daughters both think that they have way more chores to do than any other kids. They are especially disgruntled at having to wash dishes. Apparently we are the only family in the western world without a dishwasher. They will concede to the fact that there might be a few families in Africa who also wash dishes by hand, but we are definitely the only holdouts here.

Basically, Parkinson's disease affects the whole family. 

Sunday, May 8, 2011

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.

Friday, May 6, 2011

Failed my walking test

I was at my neurologists for a third year check up on my brain implant. As I said in the blog about the second year check up, they do the whole test 4 times. First I come in off meds, but with the stimulator on. I have to do a bunch of tests in the office, like putting pegs in pegholes, pushing buttons, catching myself when they pull me backwards, and then the walking up and down the hallways like it shows in the videos. Then they turn off the stimulator, and I do the whole test again; then I take my meds and they do the whole test again; and finally they turn the stimulator back on and do the whole test again.

But on Tuesday when I went in, I started the first round of testing, and had such a severe dystonic attack that I couldn't do any of it. So the movement disorder clinic team and the surgical team have to meet to discuss what to do with me. They might want to start over, with the surgery, putting the wires in a different spot. I sure hope it helps this time.

Tuesday, May 3, 2011

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!

Sunday, May 1, 2011

Videos of my 2 year check up after DBS implant surgery

Here's an example of my lack of computer technical finesse: it took me all evening, with Derek's help, to post these pictures. We finally got them in the right order, but I couldn't get any text to go with the pictures, so I decided just to write the script in a new entry.

In April, 2008 I underwent an 11 hour surgery, awake so that I could answer questions, move my fingers and toes, and let them know which body part was being assaulted with an electrical charge.

I can't believe it has been 3 years since I emerged from the hospital with my hair shaved off at the front, sporting 18 shiny metal staples on my scalp. Sorry, no one took any pictures of me.

Next week I go in for my 3 year check up, so hopefully I will get a new set of videos. In the following pictures, I was doing office calisthenics and hallway runway walking, repeating the whole thing 4 times. In the first video, I am unmedicated, but my Deep Brain Stimulator is on. In the second, my stimulator is off as well. As you can see, I was unable to walk even with help. In the third video, I have taken my meds, and in the fourth my stimulator was turned back on.

On & Off

Thursday, April 28, 2011

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!

Friday, April 15, 2011

My story, part 2

Part 1 ended where my former life ended, leaving a dream job, applying for disability benefits from Canada Pension (got turned down 3 times), trying to take care of a 5 year old and a 7 year old who still needed me to cut their meat when I couldn't hold a knife a fork, driving them to school everyday when I shouldn't have been driving anymore (thankfully they weren't with me when I totaled the van), and my husband was a truck driver working insanely long unpredictable hours. 
This was the darkest part of my life...

Thursday, April 14, 2011

My story, part 1

My name is Karen, and I have Parkinson's disease. I am 45 years old, and I have been out of the work force since I was 35 years old. 

I asked my neurologist if he could give me an idea of when I could be well enough to go back to work. He got this look of compassion on his face and told me that I most likely would not be returning to work.
That was a blow, to think that my teaching career was over. I didn't really feel that teaching was the right career for me, but I had also been working in the school library, and I very much enjoyed that. With both of my children in school now, I had been offered a quarter time position as the library teacher, and it was a dream job for me.
But one of my first symptoms was an inability to make my fingers do what they were supposed to do - so typing, shelving books, even holding a book to turn the pages was getting almost impossible. When I read aloud to students, it felt like my voice was getting stuck in my throat.
It was even getting hard to think! It was like my brain was in Jello. I was having what I now recognize as anxiety attacks, where it felt like the world was closing in on me. Sometimes the floor would jump up and smack me in the face.
I thought I was going insane.