stcyme
13 post s
14-Sep-2008
6:35 AM
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Well, I guess it had to happen. You can't expect your legs to only freeze when your sleeping and don't need them. So, I've had my first official fall. Going up steps at church to play drums for a song ... yep, you guessed it, I picked my leg up to go up a step and it never stretched back out. So down I go, get back up, play the drums, and then quietly exit feeling like a complete fool. It's bad enough to fall, but to do it in front of 600 people (and tv cameras... and have atleast half of them know I have PD. It makes me want to go crawl under a rock somewhere.
It's the first time I've really felt "sick," like there is something wrong with me. I live with all my symptoms every day, but this is like the great eye opener. I guess I'll quit whinning now...
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opera singer
8 post s
14-Sep-2008
10:27 AM
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Sorry about your fall. If you can't fall at church, then where can you fall? The real measure of the (wo)man is that you got up and continued to play!
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michelle
161 post s
14-Sep-2008
10:45 PM
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Great job getting up! I fell off the back stairs of my friends house in front of 60 colleagues and acquaintances - a very ritzy cocktail party. The burn is my pd looked great - not my alcohol consumption. I fell on a bush and had a grass stain on the butt of my white linen skirt. The only good thing was my husband's boss had left just before this happened. The annoying thing is most people attribute it to pd, but I know it was just me being human. Michelle
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ddd
12 post s
15-Sep-2008
2:42 PM
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Hi Stacey, Am soo sorry to hear about your incident. Hope you are alright. Take care.
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dab810
117 post s
15-Sep-2008
4:55 PM
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Hi, Kudos for getting up and playing at the church.... I haven t fallen yet...but I try to be extra carefull. I read somewhere that falls are a major cause of death for elderly PD patients along with choking .So take extra care on stairs etc. Glad you are o k... Dave
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JimOC
31 post s
15-Sep-2008
10:50 PM
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You should not feel embarrassed that you fell- you should be alarmed! Would you feel better about it if you were home alone and fell and broke a hip- it is very dangerous at any time. When I get into a situation where my PD is exposed, I try to think of it as an opportunity to educate healthy people about PD - there is something wrong with me, and perhaps if they understand, they can help. By the way I was diagnosed with osteoporosis last year, so as a male PWP, I have extreme risk. Don't be shy about using a cane or walking stick or handrail.
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Jnoland
1 post
22-Sep-2008
7:50 AM
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I am glad to hear that you got up and were OK. I have fallen too. For me it was the either the second or third time that was the wake up call. You are not whining. In fact, that was your wake up call. Most of the time I do not fall, BUT it is a possibility. Usually when I am tired or walking for "long" periods of time. I have a cane now and it helps. I only use it when I feel like I am at risk (as above) or am going to experience a long walk over strange surroundings I've never been to. If this sounds negative, it's not meant to be. You really should think about a cane for those "just in case" times. As others said, those falls can be serious. Also, if it matters, I'm 43.
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mdavis5231
249 post s
22-Sep-2008
7:07 PM
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a quick note about canes and (walking) sticks: I have used a walking stick for about the last 8 years (I was dx'd over 14 years ago). I literally don't leave home without it. my original stick, which my son got me when we lived in Alaska, is hickory - unbeatable for weight and strength. I just got another stick (55" twisted sweet gum) from this company: www.brazossticks.com. check 'em out! who says using a stick or cane isn't cool? btw: they can be a great weapon too. if you ever need that kind of thing.
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JimOC
32 post s
24-Sep-2008
1:04 PM
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I have 4 canes, a walking stick, 3 walkers, and a wheelchair. One cane has a folding seat with tripod legs- a big help when benches will be rare (like the beach). One cane is collapsible and easily fits into a suitcase or carry-on. I keep one cane in the trunk of my car. And the walking stick (looks like a ski pole) also folds in thirds, has a tungsten carbide tip for ice under the rubber cap and a camera mount under the top ball. There are useful, convenient tools available! By the way, the movement-compensating optics now in cameras and binoculars work amazingly well- worth I would guess nearly 2 f-stops in light-gathering, e.g. 1/125 sec exposure can be hand-held at 1/30th sec with image stabilization om.
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Steven V
2 post s
26-Sep-2008
7:35 AM
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I have an REI hiking pole which my students and I call an "Alter Abled Stick". I like it because you can break it down and store it. As far as falling goes, Be careful. I have taken a few falls and they are never very pretty. I want to jump up and carry on when I should be taking stock and assessing myself. I start training with a balance service dog next week. I'll keep you posted if you want.
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vienna
43 post s
26-Sep-2008
9:58 AM
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Hi Steven, I was just curious about your training with a balance service dog. I had a black lab for fourteen years that recently passed away and my balance issues are much worse in the dark out walking without him. I had never realized before how much he kept me upright. Now without him I have to use a stick for balance. My physio says it is because he brought the ground up to me walking by my side and gave me a sense of where I was supposed to be in space. I was just wondering where you are going for training and any other info you would like to share.
Cheers,
Vienna
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Steven V
3 post s
26-Sep-2008
8:10 PM
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I am working with a group out of Kaiser, OR. Joys of Living. www.joydogs.com They have just matched me with a Golden retriever named Jack. I have met him and begin my training next week. I will have to keep you posted as far as the training goes. sdvandyke@verizon.net Steve
Last Edited on 3-Oct-2008 10:57 PM
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Kevin66
6 post s
3-Oct-2008
12:31 PM
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Hello to all, I just want to give a heads up. I was Dx with pd at 32 and found falling a common problem. It was muscle atrophy and what I found to be a sudden onset of (orthostatic hypotension) a major drop in blood pressure. When I went to see my nerologist she was conserned it was a different type of parkinsim disorder. It is called "SHY-DRAGER SYNDROM" or the updated name "MULTIPLE SYSTEM ATROPHY (MSA). There is no test that can just dx a person with MSA. It takes the combined work of your family doctor, nerologist and cardiologist. You have to have a certine number of different medical issues before they will determine if it is MSA. If you have the time just look it up. It is a very rare and a terminal type of parkinism disorder. The way I look at it guy's, don't worry about how you look to other people, I really think getting up and playing the drums after falling was an awsome attitude to have. I goto physical therepy everyday, and take medication that helps the BP but now it is what it is and as long as I don't break anything falling I will keep getting up and not let this beat me. So to all my fellow PD friends. I admit I am no where I want to be at this time in my life, but as I keep getting up and getting up there has been some recent rewards like a new love, she admire's my strength and courage. Who could ask for more. Anyone that would like to e-mail direct please do so. im_4everyoung@yahoo.com Remember "It's All good"
Kevin Sorry for the spelling.
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Steven V
8 post s
6-Oct-2008
3:13 PM
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I had my first training day with Jack my service dog. We met at a mall and worked on skills related to balance. It is amazing to have a portable, moving bench to depend on. On Stairways he was in position to steady and support if needed. While walking he would come in close and steady my left side. Jack is very well trained and has already tuned into some of my needs. I cant wait to finish the four weeks of training. After the training period we will be a team 24/7. I am very optimistic that Jack will make a huge positive difference in my life. I do not want to clutter up the board. If you want more updates or information please email me at sdvandyke@verizon.net Steve
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Steven V
9 post s
9-Oct-2008
3:13 AM
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I am sorry. I posted an incorrect email on my last posting. If you want to be updated on the balance dog training, my email is sdvandyke4@verizon.com. My students are as excited as I am to have Jack full time. Thanks, Steve
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