|
on the calendar: This year's breakfast is on Sunday, November 20, 2011 from 8:30 to 12:00 important: if you are interested in supporting Parkinson's, please visit the Pacific Pacific Parkinsons Research Institute or click here to access directly the PPRI giving page at CanadaHelps.org. Tax receipts will be issued immediately by CanadaHelps.org essential reading: Porridge for Parkinson's Raises Bowls of Research: Ten years of breakfasts nets $1 million
Search for a cure gives a hearty breakfast
OTHER This was a speech my neurologist asked me to give about living with Parkinson's Disease. It is here only in case it may help someone else with PD who is trying to figure out meds and diet and the myriad of other factors that impact on a day. institute of neurosciences, mental health and addiction (INMHA) Marg Meikle October 15, 2005 Updated further May, 2008 Parkinson's disease does not define me but it is really starting to get in the way. I do not normally tell this story but I am happy to be able to contribute to the body of knowledge about this nasty disease and I am enormously glad that Parkinson's is one of your conference's three research topics this year. My diagnosis with Parkinson's disease came 6 1/2 years ago (June, 1999). Our son, our only child was one. I was 43. I definitely had had it for a long time - I had stiff hips, a stiff jaw, and general soreness. Post partum, I never recovered properly, I just got stiffer and sorer. I kept thinking -- being an old mum was much harder than anyone had warned me. Right before my diagnosis, someone asked me if I had had a stroke. I dragged my right foot and my arm-hung sort of straight, as if it had been broken and not set right. I could not stir a pot, and changing diapers was a challenge. The first neurologist found no brain tumour or MS, but had no other suggestions. Five months later when the pill-rolling tremor started my family doctor sent me to the second neurologist. This time they had enough to nail it: I had PD. At first, I was hugely relieved to know what was wrong. That doctor said: "it won't kill you but it will certainly slow you down." I remember little else about that first appointment, but as I left the office in a sort of shock, I was not impressed with the information they gave me. Me, a 43-year-old - with more or less...a baby, a horrible booklet about living with Parkinsons, that is all about adapting your home and getting in care, which freaked me out and probably isn't such a good idea to take home on the day you are diagnosed, especially if you are young. I tried the Sinemet and immediately loosened up--that was great. But truthfully it took about 3 years to get my meds more or less working right. For now. It is a finicky business. I suffered from anxiety and sleeplessness and had a lot of periformis pain, hip joint pain, and upper right shoulder stuff. I could not stand for a long time. Now I can manage all of these by managing my Parkinson's better, but a morning of excessive mouse work and my right arm binds up badly. It took four tries to get the right antidepressant and I am happy to say that I am one of the rare PD patients with the marvellous side effect of the antidepressant Mirtazipine of losing one's tremor. That is a good thing. Parenthetically, the anti-depressant seems to be essential to my moving. It is a carefully mixed cocktail. It took a kind neuropsychiatrist and a hospital stay to get that part right. Having Parkinsons Disease for me, right now, means never knowing exactly how I will move when I stand up. Or, if I will move at all. Or, if I can stand up. It means never knowing exactly how my speech will be until I start talking. Briefly, here is how it works. For me. Right now. Or does not work, depending on lots of factors. Every day varies slightly and I need to pay attention to the signals my body is sending me. I take meds -- as needed, and believe me I need them (control release Sinemet 100/25 every 2 1/4- 2 1/2 hours starting around 6 in the morning and ending around 10:30 or 11pm with 2). If I wake around 4 am, I take another Sinemet and blissfully after so many years of not sleeping, I can get back to sleep. I cannot quite bring myself to set an alarm for 4 am so if I sleep through sometimes in the morning I cannot get out of bed til the meds cut in. However, other mornings I can get out of bed fine. I have never figured out why. I tend to wake up a tad panicky - having to go to the bathroom and not really being able to walk does that. On a bad morning, I can barely get down the stairs. It takes about 45 minutes to an hour from the time I take my meds til I can navigate the stairs. Unfortunately, our dog does not get this. Many people take some of the fast-acting Sinemet first thing in the morning - I cannot tolerate it. It makes me quite racy, manic and unable to be around loud noises. Like a washing machine, or an 8-year-old. While I am waiting for the meds to kick in, i monitor my progress by paying attention to how stare-y I am, and how my feet, hands and mouth feel. When they are sufficiently loosened, I can get up and go. The meds kicking in feels as if warm oil is being squirted in your joints -- suddenly you can move. The doses can't get closer than 2 hours apart or I am guaranteed to get dyskinesia. Dyskinesia is very unpleasant, although it beats being unable to move. At dyskinesia's mildest form you twitch a bit, they call it involuntary jerking--you really have no control over it. A bad bout -- I dance continually and my right foot never stops moving. It makes you more unstable, and walking across a field, say, is a huge thing. Dyskinesia makes your body crazy but I find it makes my mind too loose too - I get manic and somewhat addled and exhausted. I think if you saw me trying to walk down the street in that state and you didn't recognize dyskinesia you might think "spastic" or "dead drunk". I know this is inevitable with long-term use of levodopa so I am hoping something else comes along. Soon. Picking up my son at school when I am dyskinetic is hell, so I try really hard to keep things even and not over-medicate. That is harder than you would think. Throughout the day, every other dose of Sinemet I add an dopamine agonist -- sort of a turbo booster --.75 mg. of Mirapex but first thing in the morning only half of that -- because on an empty stomach I get too frantic. (I've cut all the Mirapex to .375 mg. now). The empty stomach is key. Every morsel I put into my mouth affects me. What and when I eat counts too. I figured this out one day when I was helping out at a reception that went on for about 8 hours, I realized that I had been on my feet for most of the day -- sailing through taking meds - not stiffening up... when I saw what was happening I was thrilled. Why did this occur? Because I had been eating reception food -- about 1/4 of a sandwich every hour or so. Plus a lot of veggies. I started testing this and it was amazing --- truly shocking. Likely this is written down in books, and you can be told this, but until you feel it for yourself your can't believe it. Grazing is the ticket. But it also depends on what you eat. Because it turns out I am also in what I've read is a club of 20% of people with Parkinsons who can't tolerate much protein because it blocks absorption of the Sinemet. If I have about 10 grams of protein about 20 min after a dose I'm okay, but more than that amount and either I seize up later in the dose, or more likely what happens is the next dose won't absorb. I went to a nutritionist to figure this out and she told me that protein takes around 3 hours to go through your system. Fat takes 5 hours . So what I eat now will affect me in about 2 hours. Usually. It's very hard to get your head around. You need protein to repair tissue and to slow the release of sugar from the carbohydrates you eat with it. You also need it to stay calm. For me, beef is the worst, cheese comes second. Both have lots of fat. I have the most luck with vegetable protein and fish, but of course I am constantly challenging this, with varying degrees of success. Because clearly I enjoy food. Lucky me, two of the medications I take have weight gain as a side-effect. Yahoo. Dieting is trying, because any change in amounts of food or changes in meds gives you dyskinesia, which while you have it-- you can't do anything about -- but i can more or less make sure i don't get dyskinesia in the next dose, by eating some protein in this dose. Okay, I admit I use food --- sugar helps get the meds to kick in but too much gives you dyskinesia. Ditto: coffee or any caffeine. Fizzy drinks help get the meds to kick in faster too. So a Coke is a triple whammy: sugar, carbonation and caffeine. Use sparingly. And sometimes when the meds just aren't working, I nibble on a ¼ pill or so - which turns it into the fast acting stuff and helps you to get going but it isn't a very reliable solution. How do I manage with 9 or 10 doses of meds and these crazy restrictions? I do not have bad days, just bad doses. I do have very uneven days, so I manage as well as I can by taking it one dose at a time. It is all about absorption. By watching every morsel I put into my mouth, or by being prepared to live with the consequences. If I want to eat supper with my family, and not at 9 p.m. which works much better-I eat at 6 or so and usually have to write off the evening. I pretty much seize up. Until suddenly, quite a bit later.. I can move again. How do I manage? I manage the best I can by keeping regular, because constipation blocks absorption of the meds. By trying to drink a glass of water with each dose of meds (which is hell on incontinence) and by sitting up for 20 minutes after I take meds. My pharmacist trained me well. I have a much better day if I exercise in the morning. Walking is good, yoga is great, and anything in the water is great too. Menopause has been a relief from very insane monthly fluctuations that most women I know seem to get. In very hot weather-all the rules go out the window, I cannot really count on my meds. Very cold weather is weird - I literally freeze up. Everything in moderation is the key. Stress is nasty - it either freezes me up or makes me dysenteric. I would say I do what it takes to keep moving. Nine or ten times a day. Many days I glide though four or five of the doses. I also manage by not thinking about the future. I try to do anything important in the morning because I cannot always predict how the day will turn out. It seems that things become less predictable as you get more tired and have more meds in your system. I can do almost anything, but not exactly when I want to. Like drive -- sometimes when I get dyskinesia of course I don't drive -I can't keep my foot on the gas, I can barely type then. I try voice activated software and it sort of works. I just have to wait it out. I manage by having a number of different projects going at once so I can alternate - play the side effects, work with the meds. I read when I'm sitting waiting for the meds to kick in (if my eyes work) when I'm really good I can paint or knit, when I'm off I can barely surf the internet. It has been long enough that it seems normal -- but it really is not. My 8-year-old takes my hand often on the way to school and back -- because I'm walking so stiffly I could fall over or I'm flying all over the place. My 75-year-old mother had to help me off the couch the other day. Managing means having a good neurologist, and a family doctor who watches the big picture, and a wonderful pharmacist who is on top of everything, a fairly patient husband - who gets the cues. Managing also means constantly working on the self-talk - I try to be kinder to myself. I am not an idiot because I chose to eat something I thought I could handle and now my body has shut down. I have to remind myself -- it is not me, the food, the meds, or my management -- it is the disease. Perhaps it is not a death sentence but it is a life sentence. A couple of weeks after I was diagnosed back in 1999 I heard there was a big Parkinson's meeting in Vancouver. I got a press pass and checked it out. I tried to read the posters, look at the information, talk to the folks in the booths. Mostly I came away satisfied that there are large number of big brains working on this topic. I don't subscribe to any of the Internet forums like I did 6 years ago (they are far too depressing), but I keep up on what is going on. I am hopeful about GDNF, and hope Amgen comes up with an easier delivery system. We stored my son's cord blood when he was born, for possible medical support for him, in case he ever needed stem cells, but maybe they could be used for me. My friends' leftover embryos from invitro-fertilization have been offered to me too. I know science is not ready for this yet, but I am. I hope Deep Brain Stimulation is in my near future (I'm now on the list for Feb. or March), or perhaps a medications pump. While we are talking science, here is another research question: I had a younger brother who died of lymphoma fifteen years ago. I have Parkinson's disease. My youngest brother was diagnosed with MS a few years back. He's 43. We grew up in Kerrisdale, a very nice part of Vancouver. What is that about? As a patient, I believe you can't just say you want a better treatment or a cure, or for you to figure out my family's immune issues. You have to get involved, to help the big brains do their research. So our little family came up with an initiative, a crazy fundraiser that is very simple but it has been remarkably successful. We host Porridge for Parkinson's on the last Sunday of November each year. We had our fifth annual last November (for those of you who don't know porridge - it is hot oatmeal, we have a particularly fantastic recipe and serve it with a fruit compote laced with port). The money we earn goes to the Pacific Parkinson's Research Institute (it essentially goes to UBC and Dr. Stoessl's team). But, come on, porridge? This is a big shindig... 300 or 400 people attend. Last year we made $54,000.00. Not bad for about $22.00 worth of oats. Our porridge party paid for a Clinical Research Fellow's salary. In fact, we've put a face to that reality, which is really nice for the folks who contribute -they have et Dr. Troiano and can talk about Parkinson's Disease with him at the breakfast. What I have found is almost everyone knows someone who has the disease,, either the shuffling old uncle or someone like me. We put together a website, www.porridgeforParkinsons.com -- full of excellent recipes and tips...and we say gladly, "Steal This Idea". Finally, Shrek. You've probably figured out part of this. Like Princess Fiona, I tend to have a transformation at night - also many times during the day but the night is the most drastic...not quite into an ogre but it's not very pleasant....Also the soundtrack for Shrek is a favourite in our household. But when my meds are full on I can't tolerate listening to it. Full on Shrek rattles me deeply and makes me dyskinetic. Shrek has come to represent the challenges of PD for me.
Update I had deep brain stimulation surgery April 17, 2007 and they re-did the right side on feb. 7, 2008. Before the surgery I spent most of my days either frozen stiff or dyksenetic. Unfortunateky,there wasn't a drastic switch-on effect like we have seen on tv and read about. But, I have had some positive benefits when the meds are optimal. I can stand straight now i have a partial smile. I can go without a walker for short sprints, and I can get up from floor during yoga. Hurrah!
|
|||||||||||||
