Our Focus Remains on Research, Education and Support
The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts. We distributed information to more than 10,000 neurologists to help them recognize clinical signs and symptoms of Kennedy’s Disease.
Will my child be born with this DNA defect?
It takes an enormous amount of money to fund research…more than any of us can afford alone, but together, we are capable of great accomplishments. We are searching for available foundation grants, but the process is lengthy. We need researchers to continue their work, and it is only the KDA that makes funding this disease a priority.
Kennedy’s Disease Knows No Boundaries...
It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers. The defect is in the ‘X’ Chromosome that makes testosterone almost a poison to his body.
What is Kennedy's Disease?
Kennedy’s Disease (spinal and bulbar muscular atrophy) is an adult-onset “X” linked inherited disease with symptoms usually beginning to appear between the ages of 30 and 50. However, onset has also been reported as early as in the teens and as late as the 60s.
| 2003 - November 29, Other ways of doing things |
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Kennedy's Disease Chat Transcript 11-29-2003 Topic: Other ways of doing things Host: Terry Waite
Chat Participants: terryw terryw -- Hello Michigan butch -- {welcome butch} terryw -- hi butch bruce -- {welcome bruce} bruce -- Good Morning Ron, Terry and Utah terryw -- I have to let you know now that I need to leave the chat in about 20 mins to return a trencher I rented that needs to be returned by 8AM pst terryw -- I forgot all about that terryw -- the return time was in the middle of my chat terryw -- Here is the first tip to make things easier. Hiking sticks help you to get around property that has eneven terrain. Use the type that the apls trekkers use. michigander -- Good morning Terry,Butch & Bruce butch -- Good morning guys. How are both of you? Glad to hear from you too Bruce. How was your turkey day? bruce -- It was great! The benefits of being near family again keeps on racking up. How was your's? michigander -- Turkey day was a wake up call for me that after 10 years of having KD kick in...the last couple years I've had 10 pound weight surges totalling 30 pounds and its time to stop bruce -- Utah, I have gained six pounds since retirement. I need to take that off before spring. I need Terry's diet... butch -- You needed a work day just to burn off the extra calories. murf -- I gained 5 lbs in the last 2 days. terryw -- We had a great TUrkey Day and then yesterday was a work day since I had relatives visiting. They helped me put in a drainage trench. terryw -- I put my relatives to work while they are visiting. They help out a lot. terryw -- I was crawling around in the dirt all day laying in glueing pipe. I was on my butt most of the day but I still feel like I have beat with a bat. bruce -- Terry, relatives and friends are great to have around. I think I make an excellent supervisor (even though the help doesn't think so) billeric -- I don't mind crawling around in the dirt Terry. My problem is I can't get up once I am down terryw -- Bill I found an easy way, I would put one foot down in the ditch and the other on the flat ground and I could get up easier. bruce -- Utah, do you have any family living near you now? butch -- Bruce you missed a very good and informative convention. We missed you also. don48312 -- {welcome don48312} bruce -- HAPPY TURKEY, Don terryw -- Hi Don terryw -- Hi Bruce murf -- {welcome murf} don48312 -- hi all murf -- good morning all terryw -- Hi Murf bruce -- Good Morning, Murray butch -- Howdy Murf. How is Texas treating you? murf -- Hi guys, how was the Turkey? terryw -- Thank Bruce billeric -- {welcome billeric} bruce -- Welcome, Bill terryw -- Hi Bill billeric -- Mornin' guys butch -- I want to thank everyone who bought the lottery tickets to benefit the KDA. If anyone thinks they can sell some tickets at work or around home, let me know. I'll be glad to send some to you. Thanks again. terryw -- Butch I have a winning one! remember that LOL butch -- There are 29 winning tickets. bruce -- Another tip: Keep folding chairs in frequently used areas in case you need to get up off the ground or floor. murf -- Good idea bruce! bruce -- If Cindy is gone, knowing that a chair is nearby helps. billeric -- That is a good idea Butch. I had to crawl from the front yard to the back last week to get up. bruce -- Another spouse of a KD'r had an excellent idea a few chats back. Buy a set of those walkie-talkies and give one to your spouse when you leave the house to work in the yard. I could have used one the other day and now I am in the market for a pair. butch -- When you are on the ground we always have time to think how to be able to get up the next time. Amazing how creative we become. terryw -- I went to my local fire house last week and talked with them & the paramedics about KD and the choaking problem so they know what to do. terryw -- I have had choaking spelles numerous times everyday this month, 3 times were the worst ever and I thought I was going to die. my airway stayed closed for up to 2 mins with no opening at all. don48312 -- terry, r u on any cold meds? terryw -- No cold meds don billeric -- I feel for you Terry. I choked at Thanksgiving dinner but thanks to you guys I tried to relax and it worked. Scared the heck out of me. michigander -- I also get airways cut off every couple months or even three times a month...dryness...a breeze...dusty air...food...almost anything can do it...and extra air conditioning makes me cough alot...but amazingly winter seems to dry the throat up from coughing terryw -- I feel like I ripped something in my throat or tore something, I get sharp poking pains right near the adams apple that triger the choaking. I am gonna have my doctor sent me to a Throat specialist to get me checked. murf -- Terry - That may be what is triggering it. murf -- I was in Dallas last week for meetings when someone decided to call a fire drill. I was on the third floor. My legs haven't worked since. bruce -- Murray, been there and done that! It is a killer. bruce -- Hint: Murry made me think of this. I was assigned a buddy when I checked into hotels just for that reason. They had the job of making certain I was safe going down the stairs. I am not a speed demon taking stairs any more. murf -- I stay on the bottom or close to it floors. for that reason. I could go down stairs real quick! LOL billeric -- Michy--We did get to Utah but snow drove us out the next day. We had already been snowed in in Rawlings, Wy. Sorry we didn't get to talk. My e-mail is now This e-mail address is being protected from spambots. You need JavaScript enabled to view it terryw -- I need to take off everyone. Sorry about this I was looking forward to this chat. I guess I will have to just read the transcript. pinkie -- {welcome pinkie} gary -- {welcome gary} terryw -- Sorry have to run. Bye pinkie -- hello, David pinkerton here billeric -- Anybody want to share the newest dope or revelations that came out of the conferance? terryw -- {goodbye terryw} bruce -- Alright all of you creative geniouses out there. Tell us your secrets - those other ways of doing things. don48312 -- any research news from conference??? bruce -- David, welcome. Are you a KD'r? pinkie -- yes; I have KD gary -- {welcome gary} bruce -- Welcome Gary murf -- Bruce - David was at the conference. murf -- Good morning Gary gary -- I am listening chat today. pinkie -- we are having a snow storm today here in OTTAWA bruce -- The subject for today is "Other ways of doing things". How we keep mobile, constructive, and creative with KD. Terry had to leave to take back a trencher and asked me to take over as moderator. chuck -- {welcome chuck} bruce -- Welcome, Chuck murf -- Bruce - you get your better half to do it! LOL bruce -- Murray - a good one! Cindy does 95% of the work and I supervise (when she hasn't taped my mouth shut or locked me in the office). murf -- I know what you mean. Karol does that to me all the time. bruce -- Hint: I have talked about this in the past. The UP LIFT seat is a great invention. I take it with me whenever visiting people that don't have bar stools or into restaurants occasionally. murf -- Bruce - what is that seat? michigander -- IS THE UPLIFT SEAT LIKE A WALKER WITH A SEAT? bruce -- It is called an 'Up Lift' seat. My brother and I have one and it is great. It has a hydraulic or gas operated cylindar to lift your but off the seat 12 to 15". don48312 -- i tred the UPLIFT, but found it didnt work for me bruce -- Don, what didn't work for you? don48312 -- bruce, the UPLIFT mikeg -- {welcome mikeg} billeric -- Someone mentioed a few chats back that a toilet stool riser was available that had a carrying case for when you travel..Anyone know the name of that device? pinkie -- my mom has the toilet seat riser, is it ever good bruce -- I use a 'Tall-ette' for the 'johns' away from home (especially needed where the handicap stall isn't really handicap accessible. pinkie -- My mom's is just a large plastic doughnut bruce -- The Tall-ette is a six in high plastic seat that fits over the john to give you height and better leverage when it is time to get up. pinkie -- It seems so long since the conference...a lot happpened there murf -- Billeric - there is a link on the spead sheet I handed out at the conference. billeric -- Thanks murf. Is that now part of the home page? murf -- Susanne the question was; is the spead sheet going on the web page? susannew -- Bill: The last chat transcript contains a lot of information from the conference. I'm not sure if it was sent out yet, I know Terry was going to do that. But its posted on the site under chat transcripts. We also have a volunteer transcribing the doctors/researchers session - we recorded it versus video taping this year. susannew -- The spread sheet? Do you mean the questionnaire results? murf -- No the spead sheet I compiled with links to web pages. pinkie -- I am still ecxited and baffled about the research they are doing in JAPAN murf -- Susanne will be putting it on with all the presentations we have permission for. billeric -- Thanks Susanne. I will check the transcripts. susannew -- {welcome susannew} pinkie -- It did sound so promising murf -- Morning Susanne bruce -- Welcome, Susanne pinkie -- we have a huge blizzard murf -- I still have to write the text for mine. billeric -- Hi Susanne bruce -- Hint: High-top shoes (ankle height) help give you better support in rough terrain. don48312 -- hi susanne pinkie -- hello susanne, david pinkerton here michigander -- pinkie,WHERE did you say it's a blizzard??? snow here in SLC billeric -- It's got to be pretty, Pinkie bruce -- David, I do not miss the snow at all. don48312 -- what is 'snow'????? bruce -- Don't rub it in! pinkie -- snow is what keeps the whole world from invading CANada pinkie -- The doctor that talked from Japan mentioned a drug starting with L that is 3 months into human trials pinkie -- He spoke near the end of the last day bruce -- I am trying to find the exact spelling of the drug. Give me a moment. murf -- He is gathering 40 patients at the moment pinkie -- It sent me spinning pinkie -- He said that there was good results in the mice susannew -- I believe the drug was Leuprolin? (SP?) But am not sure - Will know for sure once the tape is transcribed. pinkie -- Yes, susanne, i think that is it bruce -- Thanks, Susanne. I have the exact name someplace, but can't find it at the moment. Sorry pinkie -- It seemed to me to be such science fiction bruce -- The potential side effects of the drug are always a concern and that is why the tests... pinkie -- I have been startled ever since susannew -- Dr. Sobue for the University of Nagoya Japan has done some very promising research in which he's found testosterone actually affects mice (male and female) in negative ways. So the thought is to limit testosterone - as he's castrated male mice, he's found improvement. Leuprolin (if that is in fact the drug) is a testosterone suppressant and acts as a "chemical castration". However, there are other affects obviously from reducing testosterone that aren't that pleasant. But it is a choice that will have to be made if in fact this drug proves useful as one of the first treatments of KD. pinkie -- The guy from Japan said there was 9 more months to go for the tests butch -- It all sounds great except for the castration part. Count me out. don48312 -- i was involved in a test at Henry Ford Hosp where we were given Leuprolide to inhibit the testosterone. i became extremely weak during the test. susannew -- Don; That may be the drug. I'm not sure on Spelling! don48312 -- was part of an experement at OHIO state univ susannew -- Once we know for sure the name of the drug we can let everyone know. Its on the tapes. ONce the tapes are transcribed we will post to the site and send out to everyone. It takes time though. THey have to be transcribed and then reviewed and approved by our SRB before sending out. butch -- I still think there must be some drug that would help us to maintain the muscle mass we have. We are not looking to be body builders but, body savers. bruce -- I found it: Gen Sobue, MD, PhD Department of Neurology, Nagoya University Graduate School of Medicine has been kind enough to share some preliminary information in regards to a clinical trial: "We have started a placebo-controlled clinical trial of leuprorelin for SBMA patients. We are carrying out to administer the drug to the patients for one year trial span, and measuring quantitated muscle strength, ADL score, EMG measure, serum CK and several other markers. Although its efficacy was profound in our basic research with transgenic mice, leuprorelin has potential adverse effects including anti-anabolic effects, infertility, dys-erection, and psychiatric problems such as depression. Therefore, as we discussed with Prof. Fischbeck, the plan of next clinical trial, that would be multi-central study, should be based on the forthcoming results of our trial in Japan. We hope that our trial would be a hope for SBMA patients and their families. susannew -- Thanks Bruce! susannew -- Good morning - sorry was catching up. I woke up to see Terry leaving and realized the chat had barely begun. I know he was going to come in and have to leave early, but thought I'd pop in to see what's up! michigander -- Has anyone tried an AFO or is it IFO to keep legs and middle of body from wabbling??? pinkie -- I am not sure what AFO is gary -- What stands for AFO and IFO? susannew -- Bruce: What was the topic for today? bruce -- Other ways of doing things mikeg -- Good morning Susanne! We woke up to a chilly 41 in Tampa this morning. I was catching up on reading this chat when I saw that Terry is having quite a few choaking spells... is he taking Neurontin? I haven't had a choaking or dry drowning incident since I started taking it. susannew -- No. He doesn't take Neurontin. He takes Ultram for pain and Klonopin for relaxing/sleeping through the night. Perhaps he should try it. Neurontin is for muscle spasms right? murf -- I've only had choaking spells once or twice a month. Just lucky i guess. bruce -- I rarely have choking spells any more. It used to be a regular thing with me. I only have them now when I try to talk or take a breath while eating. pinkie -- I need to start taking something to help me sleep at night mikeg -- yes - it also helps me sleep at night. I don't know exactly what causes the dry drowning but all I know is it has not happened to me in over a year now. bruce -- One thing that helped me was elevating my head while I sleep. I bought an 8' foam wedge and it made all the difference for my night time choking. susannew -- The "dry drowning" is a laryngeal spasm. I'll have to ask Terry to at least try it. When he get sick, he frequent attacks. When he's not sick, he's fine. Perhaps the phlegm triggers it in someway. don48312 -- Neurontin has many approved and non-appreved uses murf -- Try a sleep study to find out if you have sleep acnia. You may need a CEPAP machine pinkie -- I, and my 2 brothers, have acid reflux quite a bit billeric -- I have taken neurontin for several years. My neuologist recommends it for pain. Haven't had too many episodes of choking. bruce -- I can't remember the last time I woke up choking. For several years it was a 2, 3 or 4 time a night ordeal. pinkie -- I wonder if it is related to KD mikeg -- I'd say for him to run it by his neurologist first and see if would be a good thing to try. I know that's the first thing my doctor put me on when I moved down here. pinkie -- Yes, i have woken up choking butch -- I found that snoring causes my choaking problem. The more I snore, the tighter Mary Lou chokes me. LOL susannew -- Pinkie: The Laryngeal spasm? Yes. don48312 -- i found since i stopped taking 'Contact" which has an anti-histamine, during colds, etc, i havent had a choking spell susannew -- Butch: : ) bruce -- Good One! pinkie -- I haven't choked for a while, i don't know\what to do about it murf -- good one butch! LOL bruce -- What are some more tricks of the trade - ways to get by - get things done - etc. susannew -- Have your wife do it! Hee Hee... murf -- Thats what we're all saying. LOL bruce -- Right on, Susanne. butch -- David--I'm sure you learned alot about KD at the conference. What helped you the most? pinkie -- I do pretty much everything susannew -- I think taking your time is definitely key. Terry pushes too hard and overdoes it. A job that normally would take 3 hours might take you 3 days. Breaking it up into different steps instead of pushing so hard to get something done and overdo it. pinkie -- I think seeing other guys that had it was somehow comforting don48312 -- i was having trouble getting my butt up and back into a van seat. we found putting Armorall on the leather seats made them just slippery enuf to make entry much easier. bruce -- Susanne, that is the hunter/gatherer way of doing things. When I start something, it is difficult to put down until it is done. (DUMB!) pinkie -- there was a lot of thing that alarmed me mikeg -- Very well put, Susanne. We all need to plan for at least 2 times as long as what something used to take butch -- Not heat others have it also but, there is someone to share the good and bad times with. butch -- should be Not that---Sorry susannew -- Bruce: I know - I'm the same way. Just push through and get it done. But if you have the time, its best not to push too hard and feel the pain later! mikeg -- ... and now he will pay for it... may take him several weeks to recover from what he just did. pinkie -- I am so independant - losing my independance scares me murf -- You could invit friends over for dinner and then put them to work like changing light bulbs. susannew -- I know. Last night he looked terrible after being out there all day with my Dad and my mom's boyfriend (Yes, my parents are divorced! Have been for over 25 years!) bruce -- I couldn't agree more and practice it less, unfortunately. When I do put something down until later, I and the project is often the better for it. pinkie -- I get my apt cleaned 2 times per month - that helps a lot butch -- utilize all resources--- susannew -- Murf: That's what we did! My family comes to visit at Foxtail Stables and instead of getting to relax and enjoy the beautiful scenery, they are put to work! susannew -- He also was extremely snappy from the exhaustion and pain he was feeling. This happens frequently after he pushes himself too hard. So, not only you suffer, but those around you also - even if you don't realize it. pinkie -- I wish I could get someone to paint my walls and steam clean my carpets bruce -- We do something similar. Every time someone visits, we have little projects that need to be done. They have been understanding and helpful. The funny thing is that they keep coming back. murf -- Most friends don't mind and always ask if there is something they can do. susannew -- Hmmm. Pinkie - now you give me an idea for another non-profit organization! One that would help those with disabilities who can't do repair/fix it work around their home... pinkie -- Sounds great to me! don48312 -- last monday, i worked as a security dispatcher from 7am till 9am, walked in the pool from 11am till 1pm, couldnt nap, then attended a football game from 6pm till 1am. been paying for all that activity since. pinkie -- I just don't thing I can paint the walls murf -- Susanne - Not busy enough? bruce -- I am THANKFUL for our family, friends, and support groups. Without them I am not certain how we would fair. susannew -- I believe others want to be useful and helpful. Now, I know the jobs we have around here are pretty physical - tree trimming, trenching for drainage, painting ceilings, picking up rocks from the pasture... eventually, they might not want to come back! susannew -- murf: No, I think I have 5 minutes a day that I could spare! michigander -- My wife is a super wife and mom...since she's able its difficult for others to see we could use help in the yard, garage, getting heavy furniture out of the garage and into the house...things don't move very fast and she has to be extra mighty doing things murf -- I tell my guys that they sleep 8 hrs. a night, so must have the time. LOL pinkie -- All i do is take care of the basics - the rest doesn't get done billeric -- pinkie--climbing ladders is almost a thing of the past for us kd ers. pinkie -- I don't use ladders mikeg -- Has anyone noticed their fine motor skills are degenerating faster in the non-dominant hand. I have had to improvise with everything - from holding a nail or screw to putting on my clothes. don48312 -- mikeg, i am losing fine tuning in Dominant hand murf -- What fine motor skills? mikeg -- I do good to get up one flight of stairs. With handrails on BOTH sides! pinkie -- I am so left handed - I hardly use my right hand. when i do i make all kinds of mistakes bruce -- Utah, Yes, I have had a similar observation. I now attempt to exercise both my hands and fingers daily. michigander -- Actually I'm right handed and the three fingers to the far right started curling down and didn't come back up from years of typing...had to give up typing as a job mikeg -- When did you first notice the fingers curling up, michigander? michigander -- Probably 4-5 years ago from a life-time of typing my right hand started to go...and symptoms of KD have been since 1991?? pinkie -- I think hand are better used as objects of beauty rather than tools bruce -- The cold effects my hands - strength and dextarity. If it is cold outside, I lose the use of them quickly. murf -- We can't handle the cold much. I don't know how some in Canada can do it. bruce -- Let's here it for our spouses and significant others! Without them life would be a disaster. butch -- Soo true, Bruce. billeric -- Fully agree Bruce. mikeg -- amen to the spouses! bruce -- So often the spouses and S.O. also take the abuse when things don't go right for us KD'rs. pinkie -- I don't have sharp knives, they cut me too much murf -- Thats cause we're so frustrated pinkie -- I have had to become a philosopher to cope with kd billeric -- your right murf. We tend to take our frustrations out on whoever is the closest. pinkie -- I live alone to spare anyone my wrath pinkie -- we are having a huge snow storm here in CANADA right now michigander -- What part of Canada is having the storm...maybe it's headed this way?? pinkie -- OTTAWA bruce -- Do you verbally abuse yourself, David? pinkie -- I am a very gentle person murf -- Cold here too 54 deg F butch -- I don't think we vent our frustrations on just anyone, but the ones who do the most for us. These should be the people who do the MOST for us and the ones we should not aleniate. michigander -- And Murf where is it 54?? murf -- Houston pinkie -- I hate the cold weather, i might go back to NEW ORLEANS pinkie -- I had a lot of fun there bruce -- Has anyone used those 'grasping' devices shown on TV? The ones that extend your reach to pick up things. Do they work for someone with a weak grip? murf -- Bruce - I bought one of those. pinkie -- grasping devices are good - try it before yoy buy it butch -- Yes Bruce, they extend the arm and don't require alot of stregnth. don48312 -- i got a grip bruce, and it works picking up morning paper, etc. don48312 -- but i would recommend getting one with a lock on grip bruce -- So, the consensus is that the grip works. Interesting. Thanks pinkie -- I need one of those things that can open jars bruce -- Is there a particular make or model that you would recommend for a grip? bruce -- Chattanooga was 28 degrees 'F' this morning. TOO COLD for the south! mikeg -- That's why we moved to Florida - to get down south where it's warmer. But this morning is the coldest it has been in a LONG time... 48 right now. I heard it was as cold here as it was in Portland, ME. chuck -- I strongly recommend visiting an occupational therapist. I just visited one and got a LOT of help and ideas. murf -- Should we buy orange stock? bruce -- 15 minutes remaining michigander -- I find frustration I tend to internalize but quickly put to the back of my mind...but a knap makes being tired and frustrated go away pinkie -- Does anyone else use a hotub? i find it great bruce -- I have one, but I my muscles get too limp and I find it difficult to get out afterwards. pinkie -- Half an hou in the hotub and I AM GOOD FOR HOURS michigander -- I don't have a hot tub but a tub as high as a hot tub because a regular bathtub is to low to get out of pinkie -- getting in and out can be dangerous murf -- Bruce - thats why I don't get in one, can't get out. mikeg -- Like everything else you've got to get in and out VERY slowly. susannew -- Terry used to go in our hot tub all the time, almost every night. But we don't have one since we moved. billeric -- I am going to scoot.Thanks for the good ideas. Always pick up something. Take care. pinkie -- too bad - I use it everyday - sometimes 2 times a day michigander -- I don't care for the water motion or hot tub affect on my feet...and definitely stay away from showers after cracking 4 ribs billeric -- {goodbye billeric} susannew -- I see my mom out in the pasture digging - looking for a pipe leak we have. I'm going to run and help her out! Take care all! pinkie -- I do my yoga in it bruce -- If it works - that is great! susannew -- {goodbye susannew} murf -- Bye Susanne bruce -- Now Yoga is something I do every day. Between that and Qigong, it makes my day. bruce -- 10 minutes pinkie -- must go, bye to all mikeg -- If I lived in Canada I'd probably stay in one half of the day! butch -- I guess it is about sign off time. Stay healthy and happy till next we meet on chat. bruce -- Take care, David bruce -- Take care, Ron butch -- {goodbye butch} michigander -- Does anyone know if doctors have decided whether Viagra is good or bad for KD?? murf -- Bye butch & David, take care bruce -- I have found that stretching is excellent for my posture as well as an anti-injury tool (for when I fall). mikeg -- take care everyone. chuck -- {goodbye chuck} mikeg -- {goodbye mikeg} bruce -- Utah, that is a good question. I don't know. murf -- Does any one know? bruce -- Of couse, if we were part of the 50% mice group, it isn't an issue for them (whether it works or not) michigander -- I find having grown up in Michigan and fallen on the lake skating alot has not saved two teeth, or a few ribs or a finger from taking a fall but must have saved the rest of my body bruce -- I was referring to Dr. Sobue's tests. bruce -- 5 minutes left bruce -- Okay, the key question for today is: Noles or Gaters? michigander -- What a Nole?? murf -- Gaters bruce -- The second key question is: Who is better - USC or LSU? bruce -- And, the third key question: Can anyone beat Oklahoma? murf -- Good question bruce -- Florida State michigander -- IT's Michigan all the way!!! bruce -- You can tell where my mind is right now. It is almost kick-off time. bruce -- Michigan - I was so happy that beat Ohio State. bruce -- ... that Michigan beat ... murf -- Got to go. Take care all and stay on you're feet. bruce -- Okay, we are almost done for today. Thanks for attending. Be safe, healthy and happy until next time. You guys are great! murf -- {goodbye murf} bruce -- {goodbye bruce} michigander -- MY parent's went to the U of M and I to MSU so Ohio State has always been the arch enemy except in the case of ALS/KD research! gary -- {goodbye gary}
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