Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am very glad to see that you have added the personal stories, they are a great help. They give an outlook on what to expect with such a disease. It makes me proud to see people who are willing to express and share their stories with the world, keep up the good work!"

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript
Topics: Filing for Social Security & Disability Benefits, SMA Conference, Muscle Cramps, Cold Weather and how it affects SBMA, Pain with SBMA.

Chat Participants:

  • jean-s
  • yves
  • susannew
  • phoenixet
  • don48312
  • kdfl
  • hilary
  • jean
  • gryphon
  • michael
  • ell
  • gil
  • bob
  • mgoynes
  • toddrallen
  • melski


susannew -- I'm fine, how are you doing with finding French contacts with SBMA?
yves -- We are waiting our official register to find another patient
susannew -- Hello Phoenixet, I take it your from Phoenix? What is your first name?
phoenixet -- no I am actually from Connecticut and my name is Henry
don48312 -- {welcome don48312}
jean-s -- Did you invite some medicine specialist guest ?
susannew -- Not this time Jean, However I'll be making an announcement directly following this chat that Dr. Kenneth Fischbeck will be joining us on November 11th at 7:30 a.m. (p.s.t.) The next chat!
kdfl -- {welcome kdfl}
jean-s -- great news about Dr Fischbeck visiting !
susannew -- Welcome, Kdfl... Where are you from and what is your first name?
kdfl -- I'm from Florida and my name is John
yves -- Do you take a first contact with Diane Merry team also?
susannew -- Dr. Diane Merry (a leading researcher in the area of SBMA) has also agreed to join a future chat, date to be named.
susannew -- John and Henry, are you on our e-mailing list?
phoenixet -- yes, I am
kdfl -- Three weeks ago I fell and broke some bones in my foot and am
sitting with my foot elevated. I urge all of you to be careful. Yes I am on the list.
phoenixet -- been there-done that Kdfl
phoenixet -- but I can tell you it takes forever to heal and it will always be a week spot
don48312 -- lol
susannew -- KDFL: Did the doctors tell you of any special things that you must do with broken bones since you have SBMA? Does that make you heal slower due to torn ligaments, etc?
phoenixet -- Doctors told me nothing
kdfl -- They just said that my feeling wasn't all that good in my feet and it may take longer for the swelling to go down.
susannew -- Numb feet does seem to be a symptom that some with SBMA have.
jean-s -- Sorry about your leg John I left 4 years ago and I broke too some bone. fortunately I could repeat it without definitive damages
kdfl -- I never had a lot of really bad pain and the Doctors seems to think that is bad.
hilary -- kdfl - my wife broke her ankle bones a few years back and the only pain she had was when they set it, so don't worry too much. She is fine now.
susannew -- kdfl: Its good to hear you didn't suffer terribly with the broken bones, but there must be something to do with the nerves that did not carry the message to your brain...
susannew -- Good Morning Jean, where are you from?
hilary -- {welcome hilary}
susannew -- Good Morning Hilary, or is it evening in England?
hilary -- Good afternoon, Susanne, - yes it is 3,30 pm on a miserably rainy day in Lancaster, England
susannew -- Kdfl and Phonenixet, Great!
don48312 -- all, John & I live about 1 mile from each other here in FL
susannew -- Don48312: That's great. Have you had a chance to meet in person?
don48312 -- we plan a huge party in the future
susannew -- Don48312: A huge party? Are we all invited?
yves -- I hope to be invite from France
don48312 -- yes, all invited around pool to drink beer and make merry. it will be a KD extravaganza!!!!
yves -- I take with me a very good bottle of red wine
hilary -- Don, I'm going to start saving my pennies - beer round a poll sounds ideal, especially as the weather here is abysmal
don48312 -- weather is always great here in FL. John & I will provide lap dancing girls!!!!!
susannew -- Don48312: Then I guess I'm not coming!!!
don48312 -- u can dance Sue, lol
susannew -- I dance, but not that kind...
susannew -- Yves: It was great. I've put a post up about traveling in Germany, Austria and Switzerland in a manual wheelchair. I'll also scan some photos and post under my personal story. That will be in a couple weeks.
jean -- {welcome jean}
gryphon -- {welcome gryphon}
hilary -- Bon Jour, Yves and hello to everyone
susannew -- Terry has made a major decision... He will be going out on disability in the next week or two. Anyone out there have any guidance and information in regards to this process that you can share with others. Such as dealing with Social Security? Any tips?
kdfl -- I went out in 92 and had the backing of my boss and the company so
didn't have too much trouble.
don48312 -- I would suggest Terry apply for SS immediately. My application was backdated due to a late application.
susannew -- I believe on day 1,Terry will have a lot to do... He'll have to file for Social Security, California State Disability, make the calls to both a Short-term employer disability insurance and Long-term employer paid disability insurance company! I've heard Social Security is the pits to deal with. You must have all i's crossed and t's dotted.
susannew -- Does anyone who's been through Social Security know any tips?
How should we prepare our paperwork? What should Terry do to speed the process?
phoenixet -- unfortunately a lot depends on what social security person gets assigned to your case
phoenixet -- in my case I was lucky and had an excellent woman who really helped me
susannew -- phoenixet: Can they be bribed? Should we bring chocolates?
phoenixet -- It would work for me, the chocolates, but I don't think it will help with them
don48312 -- my ss worker was pretty good also.
phoenixet -- Your Doctor is instrumental for dealing with the short and long term insurance
susannew -- Phoenxet: When do the benefits kick in? At six months?
phoenixet -- 6 months
phoenixet -- usually short term disability plans cover the first 6 months
kdfl -- My short term lasted six months at which time long term kicked in until I retired from the company at 65 this year.
kdfl -- You will need letters of recommendation from the company and from the doctor saying that you can no longer do the job.
susannew -- Terry has a great primary physician who has be wonderful working with him. He also plans to see Dr. Graves at the MDA medical clinic at UCLA this week. Who can argue with the head neurologist at UCLA???
susannew -- kdfl: Did the letter from the company need to come directly from your departmental boss or human resources?
phoenixet -- companies may be hesitant to get involved because of ADA
laws. They usually prefer to stay in the background
susannew -- Its a daunting process to have Terry go on disability. We're
used to his steady stream of income and I'm a bit concerned he'll become
bored. However he'll have a lot to do with the Kennedy's Disease
ell -- Just got SS approved. All done by phone and mail
susannew -- ell: WOW~ How long did it take you?
hilary -- Susanne - I tried to get disability benefit over here last year, but failed because I could still walk quite a distance. Over here it is not an alternative to working - you can get it and work
ell -- last day of work was June 13 checks begin in Jan
ell -- Certain diseases are on an automatic approve list
susannew -- Almost 5 months to get your approval from Social Security??? and your benefits don't start until 6.5-7 months? Is that because the SS does not pay your monthly check until the month they're you paying you for goes by?
susannew -- ell: Is SBMA on that automatic list?
ell -- they are a month behind don't know disease list...a well kept
secret I was told
kdfl -- I got company disability first and then when I was approved for SS disability my company disability was decreased by that amount.
susannew -- Yes, Disability insurance usually has a cap such as 60% or 65% of your salary less any Social Security you get. So the total amount of payment never exceeds 60 - 65%. They don't want to entice people to go on disability, so they keep the total salary amount lower than usual.
susannew -- Hilary: England will pay you some disability while your working?
hilary -- That is so - not a great deal of money, but you get all sorts of fringe benefited like cheaper travel on trains and busses, lower city taxes, and things like that. It is well worth having, and I am about to try again. also, I can't get a disabled drivers parking badge unless I'm on Dis. Ben
susannew -- Hilary: Sounds like European companies are much more accommodating and generous with disabilities and disability benefits. Sure wish our taxes could be lowered due to the disability!
susannew -- Patrick Gryphon has agreed to host this chat. How is it going Patrick?
michael -- {welcome michael}
susannew -- Welcome Michael, where are you from?
michael -- Hi to all I am from PA
jean -- jean--Nice to meet you all for the first time. I'm from Belgium and join the association for two weeks. Sorry for my bad English.
hilary -- Bon jour Jean - or is your first language Flemish (in which case I apologies for my French!!)
jean-s -- Jean where you live in Belgium ? I am French and I was born at Lille
jean -- hi Yves, Jean-s- I'm living near the German frontier by Aachen
don48312 -- when I was in military, I spent several years in Europe, Dublin, Frankfurt, Moscow, Paris
jean-s -- Jean, are yon on the e-mail list of terry and Susanne ?
jean -- hilary sorry my first language is German or French and a little bit famish
hilary -- jean - no need top say sorry - I don't speak Vlaams at all, but I understand a little French and enough German to ask for a beer!
susannew -- Ina Bier Bitte!
susannew -- Patrick?
susannew -- Patrick: Where did you go?
gryphon -- {welcome gryphon}
jean-s -- To speak about other thing : did anyone already use bike with electric power assist ? is it an efficient solution for the weakness of our legs ?
jean -- jean-s- we make the necessary last week. Please note This email address is being protected from spambots. You need JavaScript enabled to view it.
jean-s -- OK jean merci.
don48312 -- Sue, are you Terry's wife?
susannew -- Yes, I am Terry's wife.
ell -- {welcome ell}
ell -- Good morning from NH
gryphon -- {goodbye gryphon}
gryphon -- {welcome gryphon}
hilary -- Patrick - it sounds as though you are having problems with your computer!
jean -- susannew-thank's for your investigation in the association
don48312 -- {welcome don48312}
don48312 -- I think MDA is great for providing us this chat room. Thanks Jerry!!!!!!!!
ell -- I have ALS. Is there a special chat room for us?
don48312 -- are you on aol Ell?
ell -- I am on aol
don48312 -- ell, then go to Keyword BH and locate the ALS chat rooms
susannew -- Ell: I'm not sure, you can browse through the MDA chat lists. There are ALS Associations on the web. Patrick is a member of one...Patrick any ideas?
susannew -- Ell: Did you ever have a blood test for SBMA? I don't want to get your hopes up and then dash them... but the symptoms of ALS and SBMA are very similar appearing. The majority of those with SBMA were first misdiagnosed with ALS. You may want to ask your doctor to rule out SBMA?
phoenixet -- Just a note on activity. My brother and I both have KD, he is5 years older than I. I have always been very active and he has always been very sedentary. Today he is in better physical condition.
gil -- {welcome gil}
yves -- Now , I am more relax....may be to be a " ZEN" man is a good idea to reduce the weakness
hilary -- yves - I agree: I find I can cope much better when I relax
susannew -- Hi Gil, where are you from?
gil -- susannew This Gil. I live in Vermont
jean -- Jean-s- Do you want e-mail contact in French or German with me JEAN
ell -- {welcome ell}
ell -- thanks
kdfl -- We really do have quite a cross section of KD sufferers in this room.
susannew -- Is anyone having problems with the chat room, getting kicked out? I see people popping in but not out?
hilary -- It's working fine for me
phoenixet -- yes it happened once to me, but then I am on AOL
kdfl -- I haven't had any problems yet this morning.
don48312 -- I use AOL and I was kicked off ail once already this morning. Happens a lot with AOL
mgoynes -- {welcome mgoynes}
mgoynes -- Greetings from Georgia.
hilary -- Hello, mgoynes - I take it this is Georgia, USA, no the one in Slavic europe?
mgoynes -- Yes USA.
jean-s -- Hello Mike, I am jean sagnier from France how are you ?
mgoynes -- Sure glad to see you getting this started.
susannew -- Thanks Mike. The chat is a great idea and a great forum for anyone to join and raise any issues or questions they'd like to know more about!
susannew -- Terry also says hello to everyone. He's sitting next to me and sometimes... being a backseat typist!
phoenixet -- cold weather really bothers me and makes my hands just about useless. does this happen to anyone else?
jean-s -- Mike : A little bit like the begin of this year and happy to see that things are moving with Terry and Susanne !
yves -- I had a biopsy Two years ago, and always pain in my upper foot, is someone the same problem?
jean -- Yves- I hope make contact with you because I have parents in the around from Nantes, more later on your e-mail
michael -- Yes I have the same problem with cold weather
hilary -- phoenixet - yes, does it ever. I was out this morning in the cold and wet and when I got back into my car I hadn't the strength in my fingers to turn the key in the ignition. Thank goodness my wife was with me to take over the driving. This is the first time it has been as bad as that.
kdfl -- Boy, is the useless hands in the cold ever apply to me. I'm really glad for Florida in the Winter.
don48312 -- Ditto John
jean-s -- I have also more weakness when the temperature is below 10 °C
toddrallen -- I saw somebody mention cold as a problem. I lose my manual dexterity extremely rapidly when cold.
susannew -- Cold makes Terry loses the ability to use his fingers when cold. Circulation issues perhaps with SBMA?
jean-s -- Todd : me too.
melski -- Todd: Had to move out of Wisconsin because of the cold weather. Tough on dexterity
mgoynes -- On the subject of cold weather which is on it's way to Georgia. Has anyone found any heated gloves to keep the old fingers warm?
melski -- Live in Arizona now!
don48312 -- Left MI 4 FL Melski
mgoynes -- When are we all going to get together someplace and meet everyone in person?
jean-s -- Mike : that is a great idea but a little difficult for Yves and me
don48312 -- is there any easy way to scroll back to read these messages. my messages keep jumping back to the current one?
susannew -- Don48312: You can click on the "Click here to pause the chat screen auto - refresh" right about the "Type Message" window and then scroll down to read previous messages. I'm not sure how to turn off though?
susannew -- We'll also be sending an email with this information to everyone like we did last time!
mgoynes -- Don, which browser are you using?
don48312 -- IE 5.5
mgoynes -- The best way is to select all and copy/paste into a text editor like notepad or something. Then you can read it a lot easier.
phoenixet -- Susannew, I don't know about where you live , but in Connecticut you do get a tax break. In some individual towns you also get a tax break. they don't advertise-you have to ask.
hilary -- Susanne - it ain't the companies - it's the government that does all this.
susannew -- We're in Sunny (Terry... foggy today) Southern California. The Los Angeles area.
susannew -- I'll have to check into reduced taxes...
susannew -- Phoenixet: Your referring to property taxes right?
phoenixet -- yes property tax
phoenixet -- If you buy a van to carry an electric wheelchair, some towns consider it a ambulance type vehicle and make it tax exempt
susannew -- Hmmm... A van for the electric wheelchair could be tax exempt? We'll have to call the Department of Motor Vehicles and find out more?
susannew -- I wonder if some states are considered more "disability" friendly than others... Just like some are better on costs for retirement.
bob -- {welcome bob}
don48312 -- right mg, tks
toddrallen -- {welcome toddrallen}
michael -- Hilary how old are you?
hilary -- michael - I'm 61 next month - I was diagnosed in 1995, after my elder brother (now 71) was diagnosed.
susannew -- Welcome Todd and Bob! Where are you from?
hilary -- Hello Bob
susannew -- Todd: Your from Illinois right?
toddrallen -- Hi, I'm from Chicago.
susannew -- I'll be in Chicago in two weeks on a whirlwind business trip! Kansas City on Monday...
toddrallen -- Would you have time to meet?
susannew -- Todd: I'm not sure how my itinerary is looking. They hold me captive for lunches and dinners... I'll have to let you know! We do plan to go to the FSMA conference. Have you already registered! You must register as soon as possible or else they will run out of attendee space!
toddrallen -- Thanks for letting me know. I will register after this chat if possible.
bob -- Hi, I am from the county of Suffolk,Uk.Please bear with me this is my first chat ever.
hilary -- Pleased to meet you, bob - I live in Lancaster, UK
bob -- Hi Hilary, Good to chat find someone in the UK as well as me
hilary -- Bob - I'm in touch with a few other KS sufferers in UK by e-mail
- you'll find my e-mail address on the KD list that Terry and Susanne have
yves -- is someone has tingling...I do not why?
jean -- yves please translate tingling in fresh
hilary -- yves - by tingling, do you mean small pricking sensation in fingers and toes especially, a bit like small electric shocks? If so, yes, I get that sometimes, especially when it is cold weather.
toddrallen -- perhaps tingling was a typo and should be tingling..
yves -- is tingling ...OK
susannew -- Yves: You had it... tingling.
don48312 -- are any of you planning to go to the FSMA convention next June in Chicago?
yves -- O.K. will go to Chicago from France
toddrallen -- Yes, I most definitely plan to go. I wish I knew about the last one in time.
don48312 -- I found out too late about KD last year also, Todd
mgoynes -- Don, how long will the convention in June be and do you know the dates?
don48312 -- don't have the dates hands, but its in late June for 3 days at a hotel downtown. I have been to 2 conventions and they are great.
mgoynes -- Sounds good - I'll be there!
susannew -- The FSMA conference is in June for 3 days. I do not have the dates handy, but you can access this information on our web page from the home page there is a link.
mgoynes -- Susanne, are you guys planning on going?
susannew -- Yes Mike, We will be there in June. See you there?
mgoynes -- Great!
toddrallen -- I keep trying to read the past stuff but every time an update occurs I get flung to the top page..
hilary -- Todd - try scrolling down to where you want to read, then click on "Click here to pause the chat screen ---" That holds it for about a minute - long enough to read
toddrallen -- thanks hilary
toddrallen -- nuts, the pause feature doesn't work
don48312 -- just found it hilary, thanks
don48312 -- oops, pause feature does not work
don48312 -- OK, Who broke the Pause Feature!!! lol
susannew -- Bob: Are you on our email list?
susannew -- Bob: The Kennedy's Disease mailing list?
melski -- {welcome melski}
susannew -- The message board on our web site is working again and all the links are restored!
yves -- Hilary....Have you SBMA researchers in U.K
susannew -- There are SBMA researchers in the UK. I think University of London, but not sure, would have to look up to confirm...
bob -- Does anyone else take Baclofen for alleviating cramp?
toddrallen -- Yes, I recognize that drug as one of many my mother takes for cramp relief.
toddrallen -- Her cramps are so severe that at times they cause bruising.
susannew -- Todd: Please post your mom's experiences to the message board on the web site for all to see.
bob -- Thanks Baclofen and carbamazepinn ( tegatol ) has helped keep my cramp mostly under control
bob -- My cramp was so bad that it was almost completely disabling before the drug. However the side effect of Baclofen is that it makes you tired. The disease already makes me tired as well but it is a price worth paying.
susannew -- Terry gets pain in his knees and thighs up to his hips. Its difficult for him to sleep. He tosses and turns all night trying to find better positions. Although at the end of the day when he lies down, he says it feels like, "Heaven."
phoenixet -- I have the same problem as terry. I have not slept good in 5 years. I take ultram to help during the day but at night it keeps me awake
susannew -- Phoenixet: Terry takes Ultram also!!! It KEEPS HIM AWAKE ALSO!!!
He takes in the morning and tries not to take in afternoon for fear he won't be able to get to sleep at night. BUT IT WORKS FOR PAIN AWESOME!
Does anyone else get bruising from their cramps?
don48312 -- not me Todd
toddrallen -- My are occasionally very painful, but they tend to only be for a few minutes and haven't reached that degree yet.
phoenixet -- Has anyone else put on weight after KD slowed them down. I never had a weight problem until KD really slowed down my activity.
mgoynes -- phoenixet - Yes I have had that problem, you've really got to watch your diet.
phoenixet -- hilary I eat one quarter of what I use to.
susannew -- Terry is eating less in order to try to maintain his old weight. He's got a little additional weight around the middle. He's become more conscious of weight gain and is frustrated because he really can't exercise to lose it!
don48312 -- Sue, tell Terry thanks for sending the chat transcript to me for the last chat. or was it u?
jean-s -- good idea melski !
phoenixet -- I am also curious about pain. I have read that there is no pain associated with Kennedy's disease yet my brother and I experience a lot of pain.
melski -- Phoenixet: Only when I fall. Love advil!!!!
hilary -- phoenixet - yes, I am a greater man that I used to be when I could (and did) walk twenty miles every weekend
toddrallen -- I think it is the motor neurons as opposed to the sensory neurons that are most strongly affected thus the description of no pain..
toddrallen -- Unfortunately the motor neurons through cramping seem to cause a lot of pain at times..
toddrallen -- I tried quinine to relieve leg cramps but it had a very minimal effect.
phoenixet -- I tried quinine and found it to affect my muscle strength
hilary -- Bob - I've not heard of that drug for cramp. I've found that stretching the muscles alleviates cramp almost instantly - it is just a matter of experimenting to find which way to stretch for what cramp. The most difficult are cramps in the jaw (which I get quite often) and in the neck. For the neck cramp, I hang by my fingertips from the door frame -
that usually does it!
susannew -- OK, I have to come clean. Most of the emails that go out are my doing...
don48312 -- and Terry gets all the credit, sounds like our home Sue, lol
jean -- susannew-what's news about the questionnaire, because my uncle had also SBMA and is died at his 68', but his wife is still living and could answer to many questions
susannew -- Don has volunteered to collate the questionnaire. I send him questions as they come across with the name of the sender and email address removed for privacy sakes.
don48312 -- I am assembling the questions as I get them, and the questionnaire is scheduled to be completed for mail in late Nov
susannew -- Thanks to Don for taking on the task of helping put the questionnaire together.
susannew -- Does anyone when standing press their stomach out forward to help assist in standing and upper body weight. It makes Terry look like he has a "pot-belly".
don48312 -- I do Sue. look pregnant
phoenixet -- Yes Susanne, I do
phoenixet -- I think it is a balance thing
phoenixet -- falling and weight gain go hand in hand. The more we weigh the more off balance we are
phoenixet -- the more KD progresses, the more walking becomes a balancing act
toddrallen -- I believe I have a faster than usual metabolism. Do others feel similarly?
jean-s -- I agree that don't take more weight is very important for us !
mgoynes -- phoenixet - I do have a lot of low back pain - especially while trying to sleep on my side.
hilary -- I get pain in my knees and , occasionally, in my elbows. Knee pain I've had for very many years: long b4 diagnosis
susannew -- Pain, is becoming more and more known. Not everyone has pain, but Terry has it and we've found probably 20 others who also experience it. That's a question for the questionnaire that will be coming out and we will try to determine who prevalent it is and if it needs to be recorded in medical journals as a symptom.
hilary -- Yes, I've cut down on food quite a bit - but I haven't cut out the beer and the wine - you've got to have something to make life worth living! :-)
melski -- Took metabolite for diet. Now my doctor says to get off because of effect on kidney. Gave me extra energy. Anyone take herbal for energy?
toddrallen -- I can still walk fine, but my ankles have gotten so weak that I thought I was going to be in a wheel chair by now.
toddrallen -- Fortunately very simple ankle braces have done the trick for me.
phoenixet -- Todd- look into ankle braces before you start with the falling
toddrallen -- It turns out that my real problem was that I was stepping down with my foot already turned and then it would give out.
toddrallen -- The braces let me feel the orientation of my feet better. Now I'm even running some again.
phoenixet -- Me too Todd
phoenixet -- a small rock is enough to twist my ankle today
susannew -- Todd, be careful... running with braces?
toddrallen -- My HMO physician kept taking x-rays but could offer no explanation. I finally on my own went to an ALS clinic where they were able to tell me to try the braces..
toddrallen -- The braces are canvas lace ups that have plastic stiffeners on the sides. The whole thing fits inside my shoes.
jean-s -- I am walking but with some pain and difficulties, so I think that in a short time I had to use a wheel chair for more mobility !
phoenixet -- better than running with scissors, lol
kdfl -- Amen to all the comments on weak ankles and having to be very careful.
mgoynes -- Well, I need to go - I have about 9 members of our local MDA support group in Atlanta coming over for a get-together this afternoon. Sure has been great to see so much buzz on a subject I thought I was alone on. I'll be looking forward to the next chat. Bye
jean -- susannew- My uncle have similar symptoms, he had a stomach hernia. it needs a medical check, in German we call it a MAGENSPIEGELUNG
susannew -- Terry had a hernia when he was around 30. This is probably due to SBMA making muscles weaker.
phoenixet -- I also had a hernia around the same age. sounds like terry and I have a lot in common at the same ages.
phoenixet -- I also had a hernia around the same age. sounds like terry and I have a lot in common at the same ages.
don48312 -- {welcome don48312}
susannew -- Good by Mike. Keep in touch!
don48312 -- Kicked off chat again
susannew -- Nice: Goodbye. And I'm an English major to boot!
mgoynes -- {goodbye mgoynes}
don48312 -- John, ill be seeing you soon
susannew -- If anyone would like to contact us: This email address is being protected from spambots. You need JavaScript enabled to view it.
phoenixet -- yes it does and it doesn't seem to make you drowsy or "doped up"
susannew -- Phoenixet: How old are you. Terry is 39.
phoenixet -- I am 44. I will be 45 in February
phoenixet -- I also left work at 39
hilary -- I have to go, now - its been good meeting you all. Keep safe and take it easy. all of you. al; the best Hilary
hilary -- {goodbye hilary}
bob -- susannew, what kind of pain does terry get?
susannew -- Terry tried Vicodin and other pain medications, but they made him drowsy and did not work for the pain. He found Ultram and it has been great for him. It focused on the pain associated with SBMA and sometimes he likes the "alertness" it gives him.
toddrallen -- Susanne, I started writing about my experiences with SBMA and will be including some info from my mom as well. I'll send the whole thing to you when I finally finish.
susannew -- Todd; Thanks. Can't wait to get your story! Also anyone else's who'd like to do a write up for the web site.
susannew -- Phoenixet: What kind of work did you do?
phoenixet -- I ran a needle grinding department for Johnson and Johnson
susannew -- Needle grinding?
phoenixet -- IV needles
don48312 -- 56 going on 19
jean-s -- I had to go, thanks for this chat, Susanne, I will be there for the next time. Bye every body
jean -- susannew- if anything I could ask my uncle's wife about Terry's
problems, e-mail me.
susannew -- Terry takes 50 mg of Ultram. 1-2 pills staggered throughout the morning depending on pain. Does not want to take more due to possibility Liver damage with overuse.
phoenixet -- I do the same with the ultram
jean -- Thanks for this chat, hope to find you back next time
toddrallen -- Does anybody else feel like they get weak or dizzy when they haven't had enough to eat? Especially not enough sugar?
phoenixet -- yes I do Todd
susannew -- Terry will take off my head if he doesn't eat!!!
phoenixet -- I believe sugar plays a part in feeling like that
don48312 -- I also have diabetes Todd
toddrallen -- I don't think I have diabetes. At least no physical has turned it up. Should I have it checked for? I tend to drink a half gallon of orange juice at breakfast to get myself going. Is that diabetes?
michael -- Todd I get a little weak when I do not take time to eat.
jean -- toddrallen- try to eat fruit sugar, like apples ...
susannew -- Terry gets shaky and feels nauseous when he does not eat. He also gets "snippy". I just look at him and tell him "You need to eat." Then we laugh! It breaks the tension.
toddrallen -- Yes, I also get extremely irritable feeling when hungry,
sometimes panicky..
susannew -- I think its called, hypoglycemia.
michael -- Todd It sounds like your blood sugar is to low
don48312 -- Todd, have doctor check u 4 diabetes
phoenixet -- that's the word Susanne
toddrallen -- Is hypoglycemia common with SBMA?
yves -- We need to eat keep muscles
susannew -- Don't know, but we'll find out in the questionnaire. Got that one Don?
don48312 -- got it sue
don48312 -- extremely common with diabetes
phoenixet -- I worry about diabetes because of the recent weight gain I am experiencing, but nothing has turned up yet.
susannew -- Terry still eats, but watches the junk food.
yves -- eat...not too much
toddrallen -- It seemed worse when I was working out frequently, but it
doesn't relent entirely even when I don't exercise hard for an extended period.
susannew -- Terry does not have diabetes, has been checked.
phoenixet -- my brother ,who has KD, also has the same problem
toddrallen -- I've never eaten much junk food, but drink lots of apple and orange juice. Really 'perks' me up..
bob -- I am regularly checked for diabetes ( which I don't have yet ) but it seems that the Dr is waiting for it to appear.
susannew -- Apple juice is very high in natural and I'm sure, added sugars! Love that sugar to get you up but slams you down hard.
don48312 -- do you all use the MDA clinics, or do you use other neurologists?
kdfl -- Don, I use Dr. Petrella in Sarasota.
don48312 -- ill b seeing her soon John. I wanted to ask you that very thing. Tks
susannew -- Terry will be going to the MDA clinic on Tuesday for disability evaluation. He's been there before, they call everyone over to "study" him. SBMA is so rare you know... not.
phoenixet -- I use the MDA clinic in Farmington CT but my private Dr. takes care of most of my concerns
susannew -- Jean; When we do the questionnaire you will receive one also. Please pass along to any family members with SBMA who could answer questions.
susannew -- 10 MINUTE WARNING! Auto-logoff coming.
jean-s -- {goodbye jean-s}
kdfl -- Susanne, this has been very interesting and hope we can get together again,
susannew -- Well, time to say goodbye's... We'll be back in 2 weeks with Dr. Kenneth Fischbeck as a featured "special guest".
don48312 -- chat on second sat of month are bad 4 me.
susannew -- Sorry Don! Whatever your doing, cancel it and be here for Dr. Kenneth Fischbeck!
toddrallen -- Excellent! Glad to hear you got him! I'll work on my
questions in advance..
don48312 -- been fun and informative again. c u all again
yves -- Bye, Bye.....good w-e in U.S
don48312 -- have other commitments every 2nd Saturday, sorry
melski -- Susan: Thanks for the room. Have a good two weeks. Enjoy the little trick and treaters
susannew -- Thanks to the MDA for allowing the Kennedy's Disease Association to put this together and others who find it to join in.
bob -- Bye everyone and thank you all for the chat I most enjoyed it
susannew -- Goodbye - take care... Aufweidesin, Adios, Au Revoir, Chao!
phoenixet -- It has been great sharing. One thought my late uncle, who also had KD, shared with me. Life is short, eat the dessert first. Goodbye.
toddrallen -- Goodbye to all, wish I could have got in at the start.. At least there is the transcripts.
susannew -- {goodbye susannew}
melski -- {welcome melski}
phoenixet -- {goodbye phoenixet}
kdfl -- {goodbye kdfl}
toddrallen -- {goodbye toddrallen}
michael -- {goodbye michael}
gryphon -- {goodbye gryphon