I just got back from our weekly ballroom dance class, and it made me think about how worried I was back when I was diagnosed in 2006. It's amazing to look back on the fear and uncertainty I felt at that time. I was afraid that I would be seriously disabled by now (even though I knew that that wasn't the typical progression). I worried that I might have to quit my job, that I wouldn't be able to do the things I wanted to do, and that I would be a burden on my family. Well, 4 years later, here I am; still working full time, still doing what I like to do, including dancing. I may not be able to dance as long as I would like, but I can still keep up. Sure, I'm a little shaky and very tired, but we had so much fun!
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.
Wednesday, March 24, 2010
Sunday, March 14, 2010
The Parkinson's Quilt: there's still time
The Parkinson's Disease Foundation is sponsoring the first International Parkinson's Quilt Project. People all over the world are designing and making quilt squares to be put together into a quilt which will be displayed in many places in different countries to raise awareness of Parkinson's Disease. Here's the link: http://www.pdf.org/en/pd_comm_news/release/pr_1259882190
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
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
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About Me
- Marian
- 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.