Judy Shares About Mt. Washington
August 31st, 2010 Posted in Inspiration for People with A Chronic Illness
There’s been a lot of talk lately amongst some of the Parkinson’s community about climbing mountains. Recently, a group of people, which included our own Judy, climbed Mt. Washington in New Hampshire in order to raise funds and awareness in an effort to find a cure for both PD and Alzheimer’s disease. You have to view her video of her experience on how the climb went. You’ll be so very encouraged, inspired, and touched—guaranteed. (Go to Judy’s Mt Washington )
Yesterday, I received a post comment from a 29-year-old young woman, by the name of Brandi Roman, who has had PD since the age of 25. She has just recently finished climbing her own mountain in an effort to bring awareness to the PD cause. She and some others together climbed the highest mountain in her home state of Montana—12,807 feet of a mountain called Granite Peak. You can check out http://www.summit4parkinsons.com/wordpress/.
What motivates people to do stuff like this? First, you have to see beyond yourself—more than just feeling better merely for your sake—you have to want it for all mankind. Second, you have made a conscious decision to stand and fight, no matter what. You have decided that whatever disease you have, it doesn’t have you—you’re still in control and calling the shots. You’re not giving up.
Brandi’s mountain was 12,000+ tall in Montana. Judy’s mountain was Mt. Washington in New Hampshire. We who live with a chronic disease are all climbing mountains, but they may take a different form than steep peaks and rocky terrain. Your mountain may be walking one lap of a football field for a fundraiser or forcing yourself to walk a little further today than yesterday. It may be joining a support group and getting out and meeting people or just accepting the fact that you have this disease itself.
All through life, we will come to mountain after mountain along our paths. No path is without its challenges and mountains are a part of those challenges. Piles and heaps of ‘stuff’ which we must determine to climb over or just be content to stay where we are. We know if we climb, it will be steep and tiring. We may be gasping for air. But in the climb, somewhere deep down inside of you takes over—something you didn’t know you had and you push yourself to keep going. You keep fighting the urge to quit until you finally reach the top. And when you take that last step, you see why you fought so hard and pushed so long to get there. The view is breathtaking. It is incredible, leaving you speechless—unlike anything you’ve ever experienced.
That is what happens when you climb the mountains and press on until you reach the top—you stand in awe of what you have accomplished, what you never thought you could do. You see what you’re made of and so do those who are watching you.
Your largest mountain may be the disease itself. If so, take one step at a time and push on. Fight for your life, don’t give up, and don’t give in. Your mountain may be taking care of someone you love who has a chronic or terminal disease or illness. Take one moment, one day at a time and take time for you. One of your mountains may be stepping out of your fear zone and meeting some other people who are climbing the PD mountain. Do it. You won’t be climbing alone and when one of you grows weary and wants to quit, the others will help him fight his way to the top, just as Judy and Jeanette did for each other on Mt. Washington.
“…if you have faith the size of a mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move; and nothing will be impossible for you.”
Start climbing that mountain or make it move out of your way. Nothing is impossible, especially when someone is climbing with you.
Give Me Life or Give Me A New Writer
June 17th, 2010 Posted in Daily Walk with PD
I’m reading an article on PD. I’m not sure how I came upon it other than I had typed in Parkinson’s Disease and walking. Go figure. Anyhow, by the second paragraph I had decided I didn’t much care for the article.
Here are the first two paragraphs:
“Parkinson’s Disease (PD), a devastating illness, occurs in one of every 100 people over 65.
“It is a slowly progressing disease of the nervous system that results in progressive destruction of brain cells (neurons) in an area of the brain called the substantia nigra. Death occurs usually as a result of secondary complications such as infection.”
This article was definitely not written by a PD patient nor by, it seems, one who is associated in any way with PD (and I confirmed this fact by looking up the author, who happens to be a writer that contributes to many and widely varied freelance opportunities on the web).
Now, the reason I say the author does not suffer from PD is because they’d know better than to bring up the issue of death within the first two paragraphs (personal opinion). PD patients are more understanding than that toward those who live with this disease. We don’t talk about death until we are back to the car after walking through an entire outdoor art show, stopping every 20-30 feet to rest and struggle to get in the car because we’re so stiff. And even then it is only a passing remark that mimics something like, “Ugh, I’m dyin’ here!” as we pull our leg(s) inside.
PD patients can be sensitive to the word death. Others (I personally have met them) are busy making funeral arrangements for us in their free thoughts as they tell us to “Slow down, take it easy, let someone else get that for you.” Thank you for your kindness but, if we can do it, we want to do it ourselves and if we can’t do it, then the kindness of someone else is most great appreciated. We’re a lot like you, the normal non-PD person. So, please don’t write us off as un-useful or non-productive. We want to keep going to the very end, even if it doesn’t look like we’re doing much.
We can move. Not as well as we may have two years ago, but we can move. I refuse to sit in a chair and watch my life pass when I can go outside and cut flowers. I can’t work outside as long as last year, but I can still enjoy my garden, even if it’s just to look at it.
This is all to say that if death is in the top five words someone chooses to use to describe PD, might I kindly suggest you get a new thesaurus and find a new synonym or grab a new dictionary for a new definition. Here’s a few I’ve found (at least in my books!):
Parkinson’s Disease –
- Opportunity to encourage others who suffer and/or struggle in life by way of personal experience, warranting personal understanding
- A struggle in life that allows for a new focus on the things that matter most
- A situation where a person is forced to stop and smell the roses, as they are forced to walk more slowly due to lack of muscle movement, allowing for the opportunity to literally, stop more often and take notice of nature, people – life itself.
As a PD patient, I know that there are tough times. You’re stiff. It hurts to move. It hurts to sit. It hurts to turn over in bed. It’s hard to turn over in bed. You shake. Sometimes constantly. Because of tremors. Because you’re cold. Just because you want to. Sometimes you wish you could hide. No one can hear what you say and when you’re asked to repeat what you said, you can’t remember what you were saying. Swallowing can be difficult. Your moods can be dark, not because life seems depressing, but for reasons you can’t explain. Writing becomes unreadable. You trip. You fall. You drool.
Shall I go on?
My point is this: I know – personally – what PD is like, but I refuse to look at it as a death sentence. As for the author’s first statement in the quote above, “Parkinson’s Disease (PD), a devastating illness, occurs in one of every 100 people over 65”, her statement of PD being a devastating illness is correct. She is correct – it can be devastating. What she didn’t say is that, while it occurs in more than one of every 100 people over 65, there’s a whole group of us that developed this disease long before the age of 65. I’ve chatted with a few people who are in their early thirties and younger.
I don’t mean to sound as if I am picking apart this author’s report and really I am not. I would just like to see articles such as this one, written with a bit more accuracy or at least, some consideration for those of us who live with it and don’t intend on giving up any time soon.
