by Greg Singer
I have been around this email support group for quite a while. I like all of us here is stubborn and proud.
I will fight this as long as I can!
One day at work I tripped going down the aisle (like that never happens), and about 15 people prairie dogged over the walls to see if I was o.k. I was, but realized at that time they all knew that I had a problem walking. Hell, they watched me stumble around for a long time as it progressed. I had the Frankenstein stiff walk, I left the curved footsteps in the snow as I walked across the parking lot. They all knew, no one cared, but they did worry about me getting hurt.
That day at lunch, I went out and bought my first cane. I heard so many "It’s about time" comments when I got back.
The next step (no pun intended) was the disabled parking placard. Again, I will fight this as long as I can!
I stumbled across so many parking lots, wearing myself out. Then one day I went to a Pink Floyd (Yes I love hard rock) concert down in Denver. I left early, and still ended up parking about a mile away. Well out came the cane, and I trudged my way to Mile-Hi stadium. Got a lot of "way to go" comments from folks along the way, but really I was cussing myself out for not having the placard yet. I got a ride back to my car. I also went and got the placard the next day.
Next choice was the W/C…. I knew this would be a while in coming, but there was a possibility of getting laid off, and I found out that insurance covered a W/C. So I got that. Didn’t get laid off, and so far… still here, but that could change any day. The chair rode around in the back of my Explorer for so long. I would use it occasionally for thing like Disneyland and such, but for the most part, it stayed pretty much new in my truck for a couple of years.
Then they shut down the cafeteria that was just 100′ from my cubicle, and I would have to trudge (again) about a quarter mile to the cafeteria in the next building. It took me about 18 minutes to walk down there. Always on the wrong side of the hall – I cane with my rt. hand, so if I went off balance (again, that never happens), I would just bounce off the wall. Wiped out when I got there, and then have to do the same thing to get back. So I started using the W/C a lot, basically if I had to walk along way, I chose to roll. I still cane short treks, but the chair is my pal.
So here I sit, in the W/C. I still ski (snow/water) sitting down, hunt, fish, camp, go up into the Mtns., dance (in the chair), party, etc… I just do it all sitting down most of the time.
The folks around here at work just shake their heads when they see me out and about. There are nine separate buildings on campus, and the only time I drive is when it’s raining or snowing. I go out on the walking trail, across campus (1 mi. one way), just for the fun of it.
I know how it gets you down, I can recall many times when I just sat down and asked God – WHY! Then after a while, put my smile back on and continued on.
I hope this sharing helps someone accept the cane/walker/W/C as they progress through this disease. Remember, it won’t kill us, it just makes us walk funny/slower. And in the immortal words of the teach (Dean), who says its us that are walking funny?
Remember, everyone knows, nobody cares!
Saturday, September 8th, 2012
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
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