Monday, December 27, 2010
I guess the moral of the story is:
The storm may shut off the lights in your house, but nothing can shut off the light in your heart.
Friday, December 17, 2010
"Christmas is coming,
The shakes are coming back.
Please to put some Requip
In the Parkie's sack.
If you haven't got some Requip,
Amantadine will do,
If you haven't got Amantadine,
then God Bless you."
Maybe the pressures of the season are getting to me, or maybe things are just progressing. Whatever it is, I'm having some rough days. I'm stiff, slow, weak and shaky. I should say "stiffer, slower, weaker and shakier" I suppose. None of these symptoms are new, they're just worse than usual. Well, I'm off work for a couple weeks now, so maybe a little R & R will help. I imagine it will; I'm so looking forward to Christmas!
Thursday, November 25, 2010
Friday, November 5, 2010
Lucy once asked Charlie Brown whether he preferred sunrises or sunsets. When he said "sunsets, I guess" she jumped all over him, saying that only depressed people like sunsets; people with a positive attitude always prefer sunrises. And for this, she charged him a nickel!
Well, I'm sorry, Lucy, but I have to disagree with you. I consider myself a very optimistic person, and I love both sunsets and sunrises. A sunrise is a gift of hope for a new day, a greeting, a "good morning!" from the gods. A sunset, though, is like a parent's good night kiss; a reassurance that you can try again tomorrow, and no matter what happened during the day, you are always loved and forgiven.
I'm having a rough day today; PD symptoms are intruding on my life. I had trouble getting dressed this morning, trouble sitting still at my desk and working, trouble driving the car, trouble walking our puppy. I was glad to see the sunset after this difficult day, and remember that someone loves me no matter what.
5 cents, please :-)
Sunday, October 3, 2010
Sunday, September 19, 2010
My husband and I just got back from Maui, Hawaii last night. What a great vacation! The trip was to celebrate our 25th wedding anniversary, and neither of us had been to Hawaii before, so we had no idea what to expect. We had looked up activities in the usual books and internet sites, so we had a list of things we’d like to do, but we only made reservations ahead of time for a couple of them. We wanted to “hang loose” and not be on a schedule. Good decision!
As usual these days, I had to compensate for the Parkinson’s. Here’s a list of “do’s and dont’s” that I found helped me out (insert the usual disclaimer here: this is MY experience, and everyone is different):
1) Don’t borrow trouble. Don’t assume that you can’t do something you’d like to do because of PD. You might surprise yourself. I went snorkeling in the ocean and swimming in the hotel pool. I took a submarine ride, I danced, did a lot of walking, explored a cave and rode a bicycle 28 miles down the side of a volcano, and I had no idea ahead of time whether I could do any of it.
2) Do allow for contingencies, and be ready to change your plans. For instance, I wasn’t sure that I could do the whole bike ride, so we checked with the bike tour company and made sure that we could be picked up if it turned out I couldn’t make it (to tell the truth, one more little hill, and I would have been flagging the van down). In other words, be flexible.
1) Do remember to take your meds on time! This was surprisingly hard to do, with all the distractions and the time change and all.
2) Don’t hesitate to ask for help if you need it. People want to help, particularly if you are a customer. There was one lady on the submarine ride with us who was having trouble walking, and they arranged for her caregiver to go with her and get her settled on the sub, even though the caregiver was not going on the trip.
3) Do be prepared for increased symptoms due to being tired, eating food you’re not used to, and general distraction and excitement. Try to get enough rest, and let others in your party go and do their own thing if you’re really not up to it. It’s o.k. to take a nap or just sit and do some crochet; you’re on vacation. That being said, though, don’t let Parkinson’s ruin your vacation. If you feel like dancing, try it! You can always sit down again if you have to.
Most important of all: allow yourself to have fun!
Friday, September 10, 2010
Other interesting tidbits from the article:
"Queen’s University researchers have found that people with Parkinson’s disease can perform automated tasks better than people without the disease, but have significant difficulty switching from easy to hard tasks."
"Even when asked to simply prepare to change their behavior, people with the disease found it incredibly difficult to adjust their plans."
All I can say is: well, DUHHHHH!!
Seriously, though, I'm glad to see some actual research going on about this.
Here's a link to the article on psychcentral
Sunday, August 22, 2010
When I was 12 or 13, my parents sent me to horse camp. I was ecstatic! There was nothing in this world I loved more than horses, nothing I’d rather do than ride. My stepmom says to this day that until the age of about 15, I actually was a horse, and she’s right! So, I was eager to go and spend a week just riding and being with horses. I had forgotten about the social aspects of the trip, though.I was a shy and awkward girl, and decidedly not “cool”. When I got to the camp, the other girls all seemed more confident, prettier and of course cooler than I was. I was starting to get worried. The first thing we had to do was take a riding lesson so that our skills, or lack thereof, could be evaluated. I was terrified now; I was sure I would make a fool of myself, even though I had lots of riding experience. My anxiety was immediately communicated to my horse, and he started acting up. As we walked around the ring, he started kicking the fence, bucking, rearing and throwing his head back. He caught me right between the eyes with the back of his head, and that really smarts! The instructor was a tough-looking woman with a very gruff manner who barked instructions and corrections at us: “Sit up straight!” “Stop jerking the reins!” “Pull your elbows in!”; she was kind of scary. She had us walk, then trot, then canter the horses. My horse, of course, would not canter but just started trotting faster and faster until I could feel my teeth chatter and my bones rattle. I was terrified about what the instructor would say when we showed up on her radar.
But suddenly I remembered why I was there, and everything else became unimportant. I was riding a horse! Even if it was a rough ride, it was what I was there for, and I would still rather be there than anywhere else. I began to live in the moment and enjoy myself. So when the instructor caught sight of me, going at a hard trot, rear end slapping the saddle, elbows flapping, eyes and nose streaming from the blow from the horse’s head, and yet wearing a great big grin, her sun-weathered face broke into the first smile I had seen all day and she yelled “You’ve got a lot of guts, kid!” It was one of the finest compliments I have ever received, and I still treasure it.
I realize now that this is how I deal with Parkinson’s and any other problems that come my way. Maybe not always with grace or style; but I always hang on as hard as I can and remember to enjoy the ride, no matter how bumpy it is, because that’s what I’m here for and there’s nowhere else I’d rather be.
Saturday, August 21, 2010
For anyone who has PD or is a caregiver for someone with PD, I would recommend attending any event where Davis Phinney is a speaker. He was that good.
Tuesday, August 10, 2010
Now, wasn't that a thoughtful and useful gift? It sure came in handy while we were camping this weekend!
Tuesday, July 27, 2010
I'm not now, nor have I ever been a morning person. Here are a some of the clues that tell me that I'm up before I actually wake up:
I poured beer into my coffee. A mistake, but perhaps an unconscious indicator of attitude.
I garnished my son's baloney sandwich with chocolate syrup instead of mayonnaise. He was kind enough to point this out before I finished.
Instead of sprinkling salt on the eggs, I methodically removed the cap from the salt shaker and poured all the salt in, then stood there staring at the pile of salt in the bowl, wondering why I did that.
This one has happened multiple times: I made the coffee without putting coffee in. My husband gently brought this to my attention. Sheesh! Next thing you know, he'll want food in his dinner.
There are other examples; new ones every day, in fact. Maybe all this PD stuff is actually lack of sleep.
Well, I guess I'd better go make the coffee. I think I'll put coffee in it this time.
Friday, July 23, 2010
It's amazing to me how much the PD symptoms are amplified by stress, either physical or emotional. I can barely type right now; the muscles in my arms, wrists and hands are so rigid. Maybe it's not that way for everyone, though. Lord knows, this disease works differently for every patient.
There's been a lot of interesting Parkinson's developments in the news recently; genetic treatments, laser treatments, studies about possible causes. It's hard for me to get too excited about any of it right now. Give me a cure, then we'll talk.
I find it interesting that at least one study is linking Parkinson's to vitamin D deficiency. I was diagnosed as vitamin D deficient in May. Oral supplements have fixed that, though. I have also been deficient in vitamin B12 and iron on some occasions, and have had higher iron levels than normal on others. This is a bit of a concern for me, as I carry not one, but TWO copies of one of the milder genes for hemachromatosis (iron overload).
I know that in order to find a cure, we need to find a cause, but sometimes it's frustrating just to be handed pieces of the puzzle, when there are no edge pieces and they're all the same color.
Know what I mean?
Tuesday, July 20, 2010
Just a Dog
He’s just a dog, some people say.
Why cry because he’s passed away?
He has no soul, no human spark,
No gift of speech, just a growl and bark.
But when we’re sick or simply sad,
Who worries that we’re feeling bad?
It’s Just-a-dog with big brown eyes,
Who tries to help when someone cries.
And who can always make us smile,
Though sometimes it can take a while?
It’s Just-a-dog who wants to play,
He can always chase our cares away.
Now that Just-a-dog is gone,
Our world somehow just seems wrong,
I’m Just-a-person now again,
Because Just-a-dog was our best friend.
Sunday, July 18, 2010
Wednesday, June 23, 2010
I wonder why certain positions make the symptoms worse? Lying down always makes the tremors and rigidity worse, and sometimes the dystonia and dyskinesia as well. Unfortunately, I've never had the knack of sleeping standing up! Sometimes I can manage it sitting down, but that's usually frowned on at work...
The good news is that I get this short quiet time to myself while the rest of the house is still asleep. Sometimes I share the time with the four-legged denizens of the house; the dog curled up by my chair and the cat on my lap. Sometimes they just look at me in disbelief as though to say "3:30 in the morning? You gotta be kidding; the birds aren't even up yet!" and go back to sleep.
I do enjoy these solitary pauses before the day starts (after I get over the annoyance of being rousted out of bed by Old Man Parkinson). There's always a silver lining.
Friday, May 21, 2010
I was up at 4:00 this morning, which has become pretty routine for me. My foot is curling up in pain, my body is shaking with cold and PD, but I have my kitty warm on my lap, and I have that check sitting next to me on the desk, warming my heart. I think it's going to be a good day...
Monday, May 17, 2010
You warriors know who you are: Karen, Pokie, Judy, Sherry, Bob, Dan, Sass, Auntie J., Enzo, Cherie, Nicole, Dixie and a whole bunch more. I admire your attitudes so much, and I try in my own feeble way to follow your lead.
This weekend I saw yet another example of this kind of courage. My friend Karen ("Btrflynana"; see her blog on my blog list on the right) is battling chronic Lyme disease. She was first diagnosed with Parkinson's, which is how I met her. Then, the diagnosis was changed to MSA (multiple system atrophy), but she didn't think her symptoms matched either of those diseases, so she started researching on her own and came up with Lyme's Disease. The symptoms match, and, contrary to popular belief, the bacteria is present on the West coast, just not as abundantly as in the East. This idea was met with skepticism, dismissal, and even with ridicule by her doctors. Apparently, a lot of doctors don't even believe that chronic Lyme disease even exists! Meanwhile, Karen's symptoms had progressed to the point where she had to quit her job and was in danger of losing her house (her husband was already disabled from a fall on the job years ago). She was in constant pain and had difficulty doing even everyday tasks. She did more research and found a "Lyme literate" doctor on her own, who gave her the appropriate tests. She tested positive and started on an antibiotic treatment. Today, she is making progress, though she's still suffering with pain, movement problems, speech issues, and a whole constellation of other symptoms. She is working very hard to raise awareness of chronic Lyme disease, knowing that there are others out there who should be tested as soon as possible. She bugged and badgered a local movie theater until they agreed to show the documentary movie "Under Our Skin" for a couple of special screenings. I went to the screening yesterday. The movie was powerful, compelling, sad and hopeful all at the same time. It really helped explain the Lyme controversy, the Lyme disease epidemic and what kind of things Lyme can do to a person. Karen and her husband Al had run around town putting up flyers the day before, because her ad got bumped off the local paper at the last minute. Nevertheless, there were quite a few people there, and we all received an education about Lyme disease, which was the point of the whole thing. Brava, Karen!
It also happened to be Karen's birthday, so after the movie, we all went to her house for a barbecue. Whew! There is no way I would take that on after a couple of days like that! But that's Karen. She responds to adversity with determination; I respond by taking a nap and hoping it all goes away.
Sunday, May 9, 2010
My biological mother died years ago (1986) of breast cancer. It was terrible. Fortunately for me, I had another mom; my Stepmom, Jan. To be sure, we didn't always get along at first. She came into our family at the tender age of 24, and suddenly had the care of a 10 year girl and a 12 year old boy, both of whom still had dreams of their own mother coming back. She quit the job she had worked so hard at; she was moving up fast in that company, but she thought it was more important to devote her time to getting to know me and my brother. What that meant for us, though, was that we had to say goodbye to the nanny who had raised us for the last 5 years. Resentment galore! There was a lot of friction in our family for years; it was rough on us kids, and very rough on Jan, too. But after we all grew up a bit (quite a bit, in my case) Jan and I found that we had built a friendship, and then a real mother-daughter relationship grew out of that. Part of it was the birth of our little brother, Drew. He was the sweetest, most adorable, little boy ever; even when he was a baby. Everyone was crazy about him; my brother and I could have been jealous and resentful, but we weren't. Drew was just too cute to resent. He kind of brought us all together.
However it happened, Jan became my Mom. Now, her health isn't good; she's going through a terrible time in her life. Her bones are so fragile, and her balance is messed up for some reason. She can't do a lot of the things she loves to do; even simple things. It's difficult just to go out to a restaurant or anything like that. She's just waiting for her body to heal and trying not to hurt herself any further before the next operation. I'm hoping and praying that the doctors can help her.
So, Happy Mother's Day, Mom. You are in my thoughts and in my heart every day,
Friday, May 7, 2010
So what does it mean? I've had all kinds of lab tests, and I'm as normal as can be, except that I have vitamin D deficiency. I've since read that a fairly large percentage of Parkinson's patients (in one study 55%) are vitamin D deficient. I don't think that's the problem. Maybe my appetite isn't what it used to be, but I eat. I know I do.
Well, I go back to my GP next week, so I'll see what she has to say on the subject. I'm getting so tired of going to doctors; make me feel like I'm sick or something.
Sunday, May 2, 2010
Anyway, I think the walk was good for me on several levels, and it has inspired me to step up my exercise routine a little. Now, let's see if I follow through... :-)
Saturday, May 1, 2010
The Parkinson's walk is today; what am I going to do if this doesn't subside? Get the cane out and hobble on, I guess. Oh well, at least I got a good solid 2 and a half hours of sleep...
Saturday, April 24, 2010
I hope that local folks can come out and join us on Saturday, May 1st. Here is the flyer:
Thursday, April 1, 2010
I feel suddenly energized, ready for a new start. The cloud of depression is lifting, and I'm reminded of the old saying about silver linings; how every dark cloud has a silver lining, that is. Here's a list of some of mine:
- I HATE being cold. Silver Lining: I LOVE warming up again, especially if it involves a blanket, a fireplace, a cup of hot chocolate and a window to view the storm.
- I HATE crowds. Silver Lining: I LOVE the crowd reaction at shows and movies. It's part of the whole experience to me.
- I HATE being dragged out of my comfort zone to do something new. Silver Lining: once I get there, I LOVE the feeling of adventure and novelty, and later on, I love the feeling of acccomplishment.
- I HATE Parkinson's. Silver Lining: I LOVE the friends that I've made, the inspiration they've given me, the rearrangement of my priorities, the closer relationships I've forged with my family. I also love the feeling of having a purpose; my purpose is to do what I can to cure this stupid disease, in my own little way. My purpose is to keep fighting for my right to have the full, happy life I've always envisioned.
Wednesday, March 24, 2010
My neurologist says that actually he saw some Parkinson's symptoms in me when I went to him for dizziness and migraines back in 2003, but he wasn't sure, and my symptoms were not interfering with my life really, so he didn't say anything. That means that I'm probably not just 4 years down the Parkinson's path, but actually more like 7 years. And I'm doing great! It's very heartening, and makes me optimistic about the future.
It's one thing to look at a celebrity like Michael J. Fox and be amazed at how well he's doing, but it's a lot more personal to look in the mirror objectively and realize how well I'M doing! I just hope that when I'm as far down this road as Michael is, that I'll be doing as well as he is now.
Sunday, March 14, 2010
This project is the creative offspring of an amazing lady who engineered the first Parkinson's Quilt.
My good friend Pokie Too (http://my.stltoday.com/pokietoo/blog) had a great idea last year. Through sheer enthusiasm and force of personality, she got a bunch of us on a social networking site called Patients Like Me to design and make quilt squares that represent how Parkinson's has affected our lives. Then she had the quilt squares put together into a beautiful quilt which was displayed at the Parkinson's Unity Walk in New York City last year. It wasn't easy; most of us had never made anything like a quilt square before, and a bunch of PD patients aren't always the best at getting things done on a deadline. We managed it, though, with Pokie's encouragement. She even cajoled a wonderful and talented lady whose life had been touched by Parkinson's to put the quilt together for us (the lady in question donated her services, too!). It turned out beautifully:
After the Unity Walk, a young man from the Parkinson's Disease Foundation and told us that PDF was interesting in sponsoring a bigger, international version of the quilt. Pokie picked up the reins immediately, and helped the Parkinson's Disease Foundation put together the Parkinson's Quilt Project.
This quilt is going to be truly spectacular, with each person designing a 2' by 2' square showing how Parkinson's has touched their lives, whether they are a patient, a caregiver, or a friend or loved one of a patient, or just someone who cares and wants to help. Teams can get together and do a "block" of 16 panels that are related in some way. You can use the event to raise money if you like, or just design a square and donate 25 dollars. There's still time; the deadline is June 1st. You don't have to know how to quilt; the squares can be decorated any way you want. You can use fabric paint or pens, iron-on transfers, or anything really (just nothing that's loose and could fall off, and nothing that can't be folded and unfolded. My own quilt square is part quilting, part applique and is decorated with crocheted yarn, pictures printed on fabric, buttons, glitter, iron-on transfers and beads! Fun project, and a great idea! As I understand it, the first place the quilt will be displayed will be in Scotland later this year.
Visit the link I posted above, and get started on your quilt square today! Oh, here's a link to my quilt page: http://support.pdf.org/Page.aspx?pid=321&frsid=33
Saturday, February 27, 2010
I've also been a bit depressed, but depression is a tricky thing. Sometimes, you have a perfectly good reason to be depressed, after all. Work has been extremely stressful, preparing for a big review for the customer and not feeling ready for it, or adequate for the task. Well, the review is over, thank goodness, and I can relax a little. We'll see; I have a lot of work to do and a short time to accomplish it, so the stress is still hovering in the background. Anyway, I don't think it's the meds.
What a list of drugs I take now! Stalevo (which is really 3 drugs; carbidopa, levadopa and entacapone), Requip XL, Zelapar and Amantadine, as well as the medicines for migraines and for insomnia. Oh well; it works, an I'm grateful!
Friday, February 19, 2010
We took a champagne brunch cruise on San Francisco Bay. When we got to our table, there was a bouquet of tulips, champagne and chocolates for me! Bob had arranged it when he made our reservation. I'm so spoiled! The weather was incredibly foggy (in other words, typical), so for the first half of the cruise, it was like the boat was floating in a cloud. Then, all of a sudden, Alcatraz Island appeared out of the fog, slowly followed by the rest of the bay. It was beautiful, and the weather was warm enough that we could go outside and take a few pictures on one of the upper decks. Here's Bob with the WWII Liberty ship "Jeremiah O'brien" and the skyline of San Francisco in the background:
They had a real live piano player, who was also a great singer, and we danced and danced. It was wonderful! I was exhausted, and I payed for it the next day (I could hardly move), but it was sure worth it. Here we are, after we finally gave up dancing and were recovering at our table:
I'm so lucky to have this wonderful man in my life to share these things with me!
Tuesday, February 9, 2010
I'm still in the "honeymoon" phase of treatment. The medications are still working GREAT for me (although I've had to add a few, and adjust the dosage of others), so none of my symptoms are particularly severe, usually. Still, sometimes they make life a little difficult. Here's a partial list:
6.) Dyskinesia. It's a very weird feeling when you notice your body moving without your telling it to. So far, I don't have a very big problem with this, but it happens. I was sitting in a meeting once, unaware that my head was moving side to side until someone wondered aloud why I was shaking my head "no"!
7.) Dystonia. Nasty! Like the worst muscle cramp you've ever had, but....not. I can't really explain it, but it just feels different from a regular muscle cramp. For me, my big toe goes up, and the other toes strain down until it's very painful. The only way to stop it is to hold the offending foot in my hands, which is a bit of a stretch. This symptom is getting better, though.
8.) Tremor. For me, tremor isn't a big deal, except when I'm trying to do fine work. It usually only happens when I'm in a "wearing off" period.
There are many more, but these are the major ones for me. As I said, though, my symptoms are mild. As time goes by, I will post updates.
There are also a lot of things that I've GAINED because of PD though!
Monday, February 8, 2010
Tuesday, February 2, 2010
I guess the moral of the story is: when you start to feel put-upon, take a look around and count your blessings. You'll probably find more than you thought you would; I always do.
Saturday, January 30, 2010
So, I've been taking the Amantadine for a couple of days, and so far I just feel exhausted. I did about an hour of housework this morning and I feel like I just ran a marathon! I always have to give a medication adjustment some time to work, though. Sometimes it takes a few weeks for things to settle out.
It's amazing to think of all the drugs I'm taking in my daily "cocktail": Zelapar (selegiline), Stalevo (levadopa, carbidopa and entacapone), Requip XL (ropinerol), and now Amantadine, too. Then there's the Ambien for insomnia, and the Imitrex for the occasional migraine. Whew! And to think I used to complain about having to remember to take one pill every day!!
Sunday, January 24, 2010
Well, they say that knowing is half the battle, so....
Thursday, January 14, 2010
Yesterday, I was diagnosed with yet another rare, incurable condition that nobody knows the cause of; Raynaud's Syndrome. It started suddenly this weekend; one finger that goes numb and cold, turns ghostly white, then blue, then red, then back to normal. The doctor says it's no big deal, just keep your hands warm. Oh, I also have carpal tunnel syndrome. The doctor's suggestion for that? Learn to crochet with your feet.
I'm working on it...
Tuesday, January 5, 2010
In this new year, I'm going to try to remember that every day is a gift to be opened and enjoyed and appreciated. Even if it doesn't fit or it's the wrong color or it's itchy or it doesn't work and the directions are badly translated from another language, or it got broken in the mail, or I simply can't use it. Whether I open the box and find something beautiful or something funny or maybe something that isn't quite what I had hoped for, nevertheless each and every day is a gift wrapped up in shiny paper just for me, and it was given with love.
Happy New Year!
- I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.