Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Concerning drugs, well, I was prescribed Baclofen, and finally rejected it. For me the " cure " was worse than the disease. I know some folks have experienced very good results, so my experiences are hardly the rule. In my book, any drug that you can remember taking probably wasn't that good. As far as any advice to newcomers goes, I don't often chime in unless I have some personal experience to add, and on some things I have had little if any personal contact. Of course, my commenting on things does not mean I know anything about them, the foregoing notwithstanding. I would say " welcome " to all the new folks. I haven't reposted my bio because it is at one of the PLS databases and I have a reluctance to repeat myself. But, briefly here it is again: I was diagnosed in early 1993 at the University of Virginia by the chairman of the neurology department, no less. I used to work for the UVa Medical School so I got a rather prompt diagnosis, shoot, the MRI machine was less than two blocks from where I worked. I have had several career changes, among jobs I have held are: garbage truck guard (armed), ground radio repairman (USAF -- figure that one out), auto mechanic (I have been to VW's air conditioning school, among others), computer sales and repair (yes, there was a time they would hire *anyone*), laboratory instrument maker, and the University of Virginia retired me (on disability) as an electrical engineer. As far as avocation goes, I have been much more stable there, spending most of the time exploring caves, although in my early 40s I started flying hang gliders (got my bronze " Safe Pilot Award " before the PLS kicked in). Now I mostly drive a kayak, something I can do sitting down. I plan to scoot up to Maine (cave explorer's convention) long about the end of June. I don't think I'll be able to make the April bash this year. I got out the map and it looks like a minimum two day drive from here no matter how I go. I know I missed Ronnie last year but it looks like it won't be until around Labor Day that I'll be in that neck of the woods. It looks like I'll miss stuff in Connecticut too, being as how that will be in early June and I won't be up that way 'till later. I will be stopping by to see Rita (Skunk Lady) and her husband , and anyone else who feels like braving the chill weather of the Brutal Far North. As far as disability goes, I had no trouble with the state, after all, they retired *me*. Social (in)Security was another matter, however. To make a long story short, I wound up getting a lawyer. Remember, it's only 99% of lawyers that give that other 1% a bad name. (Many of them will take such a case on " contingency, " meaning they don't get paid unless you win, and then there are strict limits imposed on what they can charge.) Remember, the doctors work for you, and you can " fire " them and get someone else. It isn't always easy (what about this is?) but it can be done. It is also good to remember that they are just people, like you and me. I used to work at a medical school, I know where doctors come from. They don't take a course in how to be God (although many of them feel qualified). Tip that works for me: I have a bunch of plastic hooks stuck to my van (by the doors, etc), my house and the like so I can hang up my cane while I fumble for my keys or something. I have pairs of hooks all over the place. I even keep a spare set around. Anywhere I have to pause and do something with my cane, there goes a pair of hooks if I can possibly make them stick. I have hooks in my bathroom, kitchen, bedroom...you name it, I probably have some hooks there. You can get 'em at grocery, drug, department stores, what-have-you. They are the kind that have sticky tape already on them so you can put them almost anywhere. I had a couple that lived on the outside of my previous truck for over three years! The people here are just that -- people. Just like you, they were rolling along and then *bang* PLS rears its ugly head. Unlike some other things where you have a baseline ( " as bad as it can get " ) you can " recover " from, this is a progressive, degenerative disease. All of us are going downhill, some faster than others. People don't come here primarily to give support, although a lot of support is given. People don't come here primarily to give out medical information, although a lot of really good information can be found here. People don't come here primarily to laugh, although a lot of laughter can be heard. And people don't come here primarily to cry, although now and then a sob can be heard, and why not? This can be pretty brutal stuff. People come here primarily because their lives have been dramatically changed by PLS, and they seek the company of others in the same situation. I can't say that PLS has affected the best people in the world, but from what I've seen on this group it would be hard to argue that it hasn't... Galen Hekhuis NpD, JFR, GWA ghekhuis@... We are the Cro-Magnon of the future Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 > > Tip that works for me: I have a bunch of plastic hooks stuck to my van (by > the doors, etc), my house and the like so I can hang up my cane while I > fumble for my keys or something. I have pairs of hooks all over the place. > I even keep a spare set around. Anywhere I have to pause and do something > with my cane, there goes a pair of hooks if I can possibly make them stick. Hey Galen, did you just admit that you are really a " hooker " ? I am glad to hear that you don't " sell " yourself short. You covered a lot of ground today. Thanks for the tips! Thom <>< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Galen: You better be stopping by and seeing " us " . And if you remember the great weather we had in Vermont when first we met, I guarantee you can leave your " long underwear " home, when you visit New Hampshire, Look forward to seeing you. Anytime anybody else is in the " hot area " , coffee is always on. Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Of course I'll be stopping by to see you folks. Maybe I'll even find Silver Lake this time, I can find it on the map, just not in real life so far... >Galen: > >You better be stopping by and seeing " us " . And if you remember the >great weather we had in Vermont when first we met, I guarantee you can >leave your " long underwear " home, when you visit New Hampshire, Look >forward to seeing you. Anytime anybody else is in the " hot area " , coffee >is always on. > >Rita > >Luv & Hugs! > > > > >************************************* >Some people succeed in spite of their handicap. Others succeed because >of them. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 Thank you for the compliment, Ronnie. I don't believe there can be a match for Galen....perhaps an understudy? Galen, I sure do enjoy your wit, and your perspective. Keeps the gray matter (no not my hair) from stagnating. Respectfully, Thom <>< > > > > Tip that works for me: I have a bunch of plastic hooks stuck to > > my van (by > > > the doors, etc), my house and the like so I can hang up my cane > > while I > > > fumble for my keys or something. I have pairs of hooks all over > > the place. > > > I even keep a spare set around. Anywhere I have to pause and do > > something > > > with my cane, there goes a pair of hooks if I can possibly make > > them stick. > > > > Hey Galen, did you just admit that you are really a " hooker " ? I am > > glad to hear that you don't " sell " yourself short. You covered a lot > > of ground today. Thanks for the tips! > > > > Thom <>< > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Rita, I'd like to be included when Galen comes up. Maybe we can have a reunion! Alan Kirk Re: Misc. stuff Galen:You better be stopping by and seeing "us". And if you remember thegreat weather we had in Vermont when first we met, I guarantee you canleave your "long underwear" home, when you visit New Hampshire, Lookforward to seeing you. Anytime anybody else is in the"hot area", coffeeis always on.RitaLuv & Hugs!*************************************Some people succeed in spite of their handicap. Others succeed becauseof them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Alan that would be fun, and lets plan on it. Maybe I will make a pot of sauce and meatballs with the trimmings. What do you think Galen. Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 >Alan that would be fun, and lets plan on it. Maybe I will make a pot of >sauce and meatballs with the trimmings. What do you think Galen. Sounds good to me. Will it be an " all you can eat " type thing? I hope so. Galen Hekhuis NpD, JFR, GWA ghekhuis@... We are the Cro-Magnon of the future Quote Link to comment Share on other sites More sharing options...
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