Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Hi Martha it has been nice to see group members posting info about themselves so we can all get to know each other better. We have several in the group who were or still are very athletic. When they do the race walking is that like cross country running? I wonder if Kim has ever done any race walking before. Do you get out with your dog to walk him fast? I have been really lucky not to have fatigue troubles thank goodness. Is the local MS association you were talking about like the local MS group I attend once a month? Is it also sponsered by the Indiana MS Society? Sorry to hear about your father dying and also that your mother has health troubles also, does your mother still live at home? Do you have any brothers or sisters that help out also? When I was a kid riding a bus our bus driver was a mean lady and kicked my brother off the bus one time because he made a comment to her asking why she was driving so fast and if she was going to a fire or something. She did not like being referred to as a speedy bus driver. I read one day she has slipped and fell on ice getting out of her boss and she ended up suing the school and she won her law suit. Bill MS history questions What state of country are you in?How long have you had MS? officially 1 year.. likely 4-5 What meds do you take for your MS? lengthy answer .. Did rebif for 6 months, this was discontinued due to intolerability issues.. with a PPMS dx there does not seem to be any proof that any DMA's are beneficial. Now just symptom management... provigil, welbutrin, neurontin, detrol, cloonazepam, zomig.. and I can't seem to think of other things that I take occasionally.What kind of troubles do you have with your MS? Trigeminal neuralgia episodes (this was actually the presenting symptom), fatigue which sometimes is very overwhelming, numbness & tingling in my right knee constantly, recently a numb/tingling band across my middle back, night blindness, ataxia when in the dark.. or on uneven surfaces.. or when exhausted...or when overheated, heat intolerance, neurogenic bladder, cognitive dysfunction issues, occasional migraine headaches, etc. etc. (I sound sick... but as Tom says: I am not sick.. just have a progressive neurological condition called multiple sclerosis) Only you list members could really appreciate that statement!Are you still working a job? At this point no... I am a school bus driver and was certified as a personal trainer/fitness instructor at the local YMCA. If you still work does the MS make your job performance poor? Honestly the MS seems to have made my job performance with both situations impossible!Did getting MS force you to quit a job? I haven't quit either yet. Just on medical leave of absence from both. I am awaiting a reply from the DOT on my Commercial Drivers Liscense physical exam. I doubt that I can qualify to maintain this. For some reason the DOT does not think highly of school bus drivers with neurological conditions!Are you on disability through Social Security? NoAre you trying to get Social Security? Not yet, but I am trying to learn all I can regarding applying. For I am pretty sure this is in my very near future. What other health condition do you have besides MS? None... just the MS.Do you get good family support to help you with your MS? Yes thus far.. a precious husband. And two sons. I get lots of support from my church family. If you are on disability what kind of things do you do to keep your self busy? Add your own personal info. I am amazed at how busy I am keeping. Honestly I cannot see how I even worked one job.. let alone two. For there really aren't enough hours in a day to accomplish all that I want and need to. Of course the scattered thinking processes causes most tasks to become much more complicated and time consuming than they would need to be if I could focus on the task at hand. But, I would be busy helping with the local MS association, and helping others with MS, and working with people from church, and enjoying my nearly year old Granddaughter. The list goes on and on. I have a lovely garden... a Golden Retriever. My Mother in Law has lung cancer and needs my help. My Father just died in May and I was very involved with his care. My own Mother is 83 and will soon need help. Also I have a lot of involvement within the local athletic community. I was a competitive racewalker (not real fast mind you... for I was never lean enough to be aerodynamic.... I always said that my wind resistance kept me slowed down) But, I would like to find ways to help with the sport. Like become a racewalking judging official. There are so many things... my PC time. I moderate an online e-mail prayer chain for my church. But for now, I am praying to know God's will in this situation. For I am sure that there is a plan.. and I am excited about being in the center of whatever He plans Oh yes, I should tell you that it is ironic that for the past 8 years of my school bus driving experience (I have driven for 17) I have chosen to drive a wheelchair special needs bus. This is such a blessing. For my opinion of physical disablity is not terribly negative. My students could not walk.. but lead a full life. Some folks can't really comprehend that. I am glad to already know it. Although at this point I am still completely ambulatory.. without assistance. For this I am so grateful.. I do not take this for granted. And, I have begun piano lessons for cognitive rehab!!! Music is new to me. The NeuroPhysc Dr suggested a certain speech therapist for cognitive retraining... yet this fellow was not covered on my insurance. So, a dear friend who is also a nurse practictioner suggested music lessons. This apparently uses both hemespheres of the brain and involves many aspects of thought and memory. Thus far I am enjoying it... but it is very challenging for me. We've (my tutor and I) have had to resort to childrens books. But-- so far so good. There is no pressure.. I am learning for the sake of learning... I am in no hurry. I have been blessed with a wonderfully patient tutor who happens to be a sister in Christ. So we share fellowship as well. Who would have ever known. Likely more than anyone wanted to know. If not... I have kept a list of folks that are interested in updates on my MS. There are letters to them from before the diagnosis.. until now. I tend to send them about every 3 months. If you are interested in being on this list... let me know. Martha ( In Indiana ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 HI Bill, Yes, I agree that it is nice when folks answer questions about their MS history and that we get to know each other better. I forgot to say that I am 46. Racewalking is the "funny looking wobble" that you see when folks are half/running and half walking. But because it is a USTAF sanctioned sport.. there are specific rules to keep it distinguished from running. Like one foot has to be in contact with the ground at all times.. and the leading leg... has to be straight (not bent at the knee at all) until it passes under the body. There are some good sites about racewalking. Dave McGovern has a good site located at: http://www.members.aol.com/rayzwocker/worldclass/homepage.htm With the awkwardness of the way this form of walking looks to the outside observer... I was able to relate it to the MS.. when I wrote a news story for our local Southern Indiana Racewalkers Club. I will attach it for who ever might want to read it. Anyway.. my walks now with my dog.. aren't speedy at all. I wish I were getting a bit more "cardio" activity. I am hoping to become in someway consistent again in working towards what ever my new fitness goals will be. I miss feeling fit. But, now that I have a different perspective from the MS... I am just grateful to be able to walk in my neighborhood at all. The local MS Association is not connected with the National or State MS Society. I think that at one point they decided to break away to allow for more money to be kept locally. Here is the web addy for our group: http://www.tristate.ms I have been greatly helped by this group. But I also find much help with the state and national MS Societies. When I thought my dx was trigeminal neuralgia only... it is so rare that there aren't nearly as many sites or anything for support. When the dx included MS... I was overwhelmed with the information available. Wonderful! It is my Mother in Law who is dying from lung cancer... and my husband has a big family and everyone is helping out. I hope I answered all the questions!!! Good to hear from you. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 Thanks Martha for sending your article and the info about the MS group you are a member of. You are also a good writer. I bet with your health conditions you must really surprise your self what all you can still do. I saw the MS group you are part of has a photo section are you in any of the photo's? I have seen the race walking on TV before and it looks like a sport you probably really work at to be really good especially the endurance to be able to walk that hard. Boy I wish I could still walk and get rid of my walker I have told my wife several times if I ever get a chance to walk again I will be walking everyday from the time I get to walk normal again. We have a girl in our MS group that said she was in a wheelchair for several years and now is back to walking again. I get a kick out of her medicine she takes she says she just eats Chocolate and said it is a fact chocolate can be used to help with her troubles. I told her if she brings chocolate to the MS meeting my wife will probably be there every month. Ha Ha. I have diabetes so the chocolate wont be for me. Bill Re: MS history questions HI Bill, Yes, I agree that it is nice when folks answer questions about their MS history and that we get to know each other better. I forgot to say that I am 46. Racewalking is the "funny looking wobble" that you see when folks are half/running and half walking. But because it is a USTAF sanctioned sport.. there are specific rules to keep it distinguished from running. Like one foot has to be in contact with the ground at all times.. and the leading leg... has to be straight (not bent at the knee at all) until it passes under the body. There are some good sites about racewalking. Dave McGovern has a good site located at: http://www.members.aol.com/rayzwocker/worldclass/homepage.htm With the awkwardness of the way this form of walking looks to the outside observer... I was able to relate it to the MS.. when I wrote a news story for our local Southern Indiana Racewalkers Club. I will attach it for who ever might want to read it. Anyway.. my walks now with my dog.. aren't speedy at all. I wish I were getting a bit more "cardio" activity. I am hoping to become in someway consistent again in working towards what ever my new fitness goals will be. I miss feeling fit. But, now that I have a different perspective from the MS... I am just grateful to be able to walk in my neighborhood at all. The local MS Association is not connected with the National or State MS Society. I think that at one point they decided to break away to allow for more money to be kept locally. Here is the web addy for our group: http://www.tristate.ms I have been greatly helped by this group. But I also find much help with the state and national MS Societies. When I thought my dx was trigeminal neuralgia only... it is so rare that there aren't nearly as many sites or anything for support. When the dx included MS... I was overwhelmed with the information available. Wonderful! It is my Mother in Law who is dying from lung cancer... and my husband has a big family and everyone is helping out. I hope I answered all the questions!!! Good to hear from you. Martha Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.