Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript
Topics: General introductions, Open Forum, Various medications patients are taking, Choking spells, Cold hands & feet.

Chat Participants

  • terryw
  • michael
  • toddrallen
  • don48312
  • pomerol
  • jean-s
  • michael
  • bob-Harkins
  • arnold
  • melski
  • kdfl


terryw -- Hello, Welcome to the 1st KD chat
terryw -- Patrick is not here, he will be hosting the next chat session
michael -- {welcome michael}
terryw -- Hi, Where are you from
terryw -- Michael, are you on our Kennedy' s mailing list ?
michael -- Yes I am on the List I am from PA
terryw -- Where I mean
toddrallen -- {welcome toddrallen}
michael -- Terry are you taking any med.
terryw -- Yes, I take a drug called ultram for Pain
toddrallen -- Is the pain due to muscle cramping?
terryw -- I think it is due to the tendons in the legs getting very tight
terryw -- Are you taking anything? and if so for what ?
toddrallen -- I have occasional cramps that are quite painful but usually they pass after a couple minutes.
michael -- This is what I am taking Testosterone 300mg IM, weekly: Neurontin,1800gm a day: and mysoline 150gm. a day. plus a lot of vitamins and herbs.
terryw -- Michael, How has it been going with the testosterone ?
michael -- It seems to slow down the progression. At the end of the week I can feel that I need a shot, because I am always over doing physical activity
don48312 -- {welcome don48312}
don48312 -- I'm on testosterone 3/4 cc a week
toddrallen -- Do you know if the testosterone has any effect on nerve
degeneration, positive or negative?
don48312 -- I don't know Todd
pomerol -- {welcome pomerol}
don48312 -- Hi all. Don From FL here on this historic voyage!!!!
terryw -- Wow, Lots of people coming in, That's good !!
pomerol -- sorry I'm late just need a few seconds to read messages
terryw -- Today's chat will be an open session with just getting to know
each other and any other topics that may come up
pomerol -- calling from Paris France and for Yves who couldn't be here today
toddrallen -- I heard Dr. Jerry Mendell of Ohio did a study on testosterone. Do you know what his results were?
don48312 -- I was part of the test at Ohio State U that first tried
testosterone. results were positive, according to my Doc
terryw -- I heard the test that Mendell did was inconclusive
terryw -- Don, Has the testosterone help you at all ?
don48312 -- yes. I can feel the difference
terryw -- That's good for you don, I am glad it helps
pomerol -- don I was on testosterone 2 years ago but without any result on the disease
jean-s -- {welcome jean-s}
don48312 -- I was in the study Todd. results were good
pomerol -- slaut jean tu vas bien ?
toddrallen -- How about according to you? Did you feel noticeably better?
terryw -- I did hear it made people feel a little stronger though for periods of time
don48312 -- I can only stay till 11 am today. got a meeting. will make whole chat in 2 weeks
toddrallen -- Any idea if the over the counter stuff like Androsteine or 19 Nora would help as well?
don48312 -- no idea Todd.
terryw -- Don, who prescribed the testosterone injections for you ?
don48312 -- My Neurologist
pomerol -- our association will be put in place in France end of October
jean-s -- salut jj je suppose que tu es pomerol ?
don48312 -- Terry, you are to be congratulated on getting this Kennedy group rolling.
pomerol -- Don you're right congratulations to terry and Susanne
terryw -- Thank you. This is for everyone. There was a need and we wanted to fill it!
toddrallen -- I've been taking creatine monohydrate which gives me a little energy but not a huge effect.
don48312 -- I tried Creatine, but seemed to have effected my Kidneys. doc took me off
terryw -- I tried Creatine also, but with no affect or results.
terryw -- Michael: Does a regular physician prescribe the testosterone or is it through a University?
michael -- My neurologist is at Thomas Jefferson University Hospital in Philadelphia, She was referred to me by Dr. Diane Merry, Who is doing research on our disease with mice.
terryw -- Dr. Merry is a wonderful person and is making great strides in KD research.
jean-s -- I use too testosterone the effect is not sure , I continue because without that will be may be wrong...
pomerol -- jean-s oui excuse-moi j'avais oublié mais tu t'es rappelé mon amour du vin!
toddrallen -- I urinate frequently and have slowly decreasing ability to "hold it". #2 affected to lesser degree. I feel this is KD related. Does anyone else feel similarly?
terryw -- I'm having the same problem with my bladder. I used to be able to hold it all night long, but now have to urinate once or twice a night.
don48312 -- I urinate frequently also, but due to Diabetes my Doc thinks.
toddrallen -- More embarassing, but I seem to drip after urinating, esp.
when I lie back down. I now hold it in a wash cloth when I return to bed
terryw -- I drip also... Toilet paper...
don48312 -- I have post urinary drip also.
toddrallen -- It's comforting to know it's not just me and that it isn't
likely some other condition that needs diagnosis..
toddrallen -- Ok, even more embarrassing, anyone else have almost zero ejaculation, just oozing later on?
michael -- I also take Viagara which seems to help
terryw -- Yes, a small amount of ejaculation. I went and got "tested" a year or two ago and they said quantity was low, but quality good.
pomerol -- Terry question from Yves: SBMA seems to be much more common in
Japan. Do you hear something about the research there ?
terryw -- Japan: Yes that was a question earlier. Susanne has not had a chance to confer with the Japanese researchers to find out more about SBMA in Japan. We do know that one town in Japan has over 200 SBMA individuals (assuming mostly from same families.)
bob-Harkins -- {welcome bob-harkins}
terryw -- Congratulations go to Pomerol and Jean S. to getting a French
Kennedy's Group going also!!! We should all continue to work together and keep communications going between us.
don48312 -- I was astounded to see other K patients 1) have high CPK levels from liver, and 2)have dry drowning
pomerol -- Don the same for me despite I haven't diabetes
jean-s -- I have high CPK but I haven't diabetes
toddrallen -- Sometimes when I awake I am completely paralyzed. I go through a few moments thinking this can't be real I must be dreaming then like a switch has been thrown fairly rapidly my body turns on and I can move again. Often when I'm sick I have severe choking / breathing difficulties. I feel like I'm losing my ability to "cough up" whatever
blocks my airways. Sometimes I awake choking. This often seems linked triggers waking paralyzed.
terryw -- Dry drowning isn't something doctors have been familiar with as a symptom. We will do our best to make them aware. High CPK levels are normal for fellow SBMA individuals due to muscle wasting.
jean-s -- It's true that is very difficult to awake and start but after a couple of hours that is better
don48312 -- The thing that scares me the most is the chocking usually
when I have a cold or Flu.
terryw -- I fear getting sick because I choke and cannot breathe. I run from anyone who is sniffling or sneezing. I choke when I lay down to go to sleep, so I can't hardly sleep when I'm sick.
don48312 -- Terry, I plan to do a life history for your web site, as soon as we are settled here in FL.
terryw -- Thanks Don, we look forward to your story and anyone else who'd like to post there's to the website.
terryw -- Don: Don't forget to email your picture also. If you want to mail because no scanner, we'll return it to you.
pomerol -- Terry I met doctors yesterday about association they'll help us but there is competition in France SLA/SMA. Thus I should be diplomatic!
terryw -- Right on Yves, Keep up the good work in France. Competition or not, SMA is not SBMA and the distinction should be made clear to the doctors. Again, competition or not, the more help and attention the better.
arnold -- Greetings everyone, from Alberta, Canada -- Suzanne Williamson here.
bob-harkins -- Hi folks. It took a few minutes to catch-up on the dialogue to date
don48312 -- will we be able to get a complete transcript of this chat  Terry?
terryw -- yes, a transcript will be available off the main chat sign on page. Its stays up for future review forever as I understand it.
arnold -- {welcome arnold}
jean-s -- pomerol, penses tu que d'autres français suivent cette session ?
pomerol -- Terry any news about your questionnaire ? when is it ready ?
terryw -- We are planning to do a comprehensive questionnaire to all KD individuals sometime in November or December. We just got back from a 3 week vacation and are getting ourselves caught up on normal life stuff, then will being working on KD questionnaire. We plan to email to everyone so your questions can also be included. So start thinking about things you'd like to know from other KD indiv. and email to us.
toddrallen -- Terryw, glad to hear it, I'll send you something. I've also been meaning to finish my "personal story" for your website but have been so busy..
bob-harkins -- Terry, regarding your questionnaire-- I am scheduled to visit Ken Fischbeck in about a month. (he is my NIH neurologist). I was wondering if I it would make sense to let him know that there is such an item in work?
terryw -- Bob: ABSOLUTELY!!! Susanne has been meaning to contact all the researchers and have phone discussions with them to let them know 1) We're in existence (most know due to email correspondence, but I don't believe we have Kenneth Fischbeck's email address) and 2) to get their input for the questionnaire. This will take time to coordinate and collate everyone's questions. That's why December looks like a more realistic date for this project.
bob-harkins -- Terry: Kens E-mail address is: This email address is being protected from spambots. You need JavaScript enabled to view it.
terryw -- Thanks Bob. We'll add him to our future mailings!!!
bob-harkins -- question: have any of you experienced increased levels of snoring? My wife indicates that I am getting louder and louder
toddrallen -- Yes, I go through bouts of terrible snoring. I have since my teen years.
terryw -- Susanne tells me that not only do I snore a little, I "moan" loudly like I'm dying (pain maybe?) and gurgle (breathing problems?).
michael -- I have the same problem as Todd
jean-s -- I have no problem with hearing for the moment only a low level of my voice
arnold -- Unfortunately I am unable to tell you if my father has had a problem snoring. (He asked me to get onto the chat then he disappeared to meet his friends for their normal SAT am coffee session.)
toddrallen -- My voice is ever more nasal. When I meet someone new (female) I have great difficulty keeping my voice from cracking/trembling.
pomerol -- no problem snoring but my voice is more and more dull
don48312 -- I got to go in a few minutes, is there anything we can do? to pursue this chocking problem? it would be greatly appreciated
toddrallen -- Yes, choking is the single most scary symptom.
terryw -- Don: Ok, talk to you later. View the transcripts later!
pomerol -- ok Terry, fine I'll do it before end of October
pomerol -- jean-s tu ass trouvé d'autres européens ?
terryw -- I don't understand French, sorry.
pomerol -- sorry terry, I was asking is anybody from Europe here ?
arnold -- Pomerol -- (I understood it -- not from Europe though!)
arnold -- Terry -- is there anything our family can do to help you and Susanne?
terryw -- Definitely. We will need volunteers in the future to help with various things, but I don't know what just yet! We're just getting started.
michael -- does any one have finger and hand tingling, and cramping?
arnold -- My dad has
michael -- When It is cold out, Its seems to cramp more quickly
terryw -- I don't have finger tingling, but do have cramping. Sometimes I can't even hold a pen to write.
toddrallen -- I have finger and hand cramping, tingling only rarely, usually because I let my arm/leg get compressed & reduced blood flow..
terryw -- Does anyone have numb or cold feet at night?
pomerol -- Terry I do as soon as I lie down
jean-s -- My strength decrease a lot when the temperature is low
toddrallen -- My face/lips often feels like Jell-O, no muscle tone & slightly reduced sensation.
michael -- I also have a hard time talking for a long time, I become hard to understand.
pomerol -- Michael I do specially when weather is cold
jean-s -- a little tingling on my face and my face. no snoring
terryw -- My voice goes if I talk for a long time. It gets very hoarse. Susanne tells me I "mumble" a lot when I talk.
toddrallen -- Yes, cold definitely aggravates finger cramping/uselessness,
along with fatigue & stress.
terryw -- No Problem Pomerol. I just can't respond to the French remarks!
toddrallen -- What is the earliest others feel they had symptoms. I lost the lip tone to play a trumpet in jr. high.
terryw -- My first symptom now that I KNOW I have SBMA and what it can do, was in elementary school where I could barely finish the 440 meter run. I didn't know why at the time. No problem with 50 and 100 yard short sprints, I was really fast at those. But I just thought I was a wimp when I couldn't do the 440.
pomerol -- do you know if US doctors have links with European or French colleagues ?
arnold -- {welcome arnold}
toddrallen -- I have a symptomatic mother, a younger sister who seems like she's experiencing some early symptoms and a brother who doesn't have SBMA. Do others know of afflicted females?
arnold -- Todd -- my grandmother is going through some testing right now
doctors are confused about what is wrong with her -- they think it might be KD related
terryw -- Todd, Susanne has had email correspondence with you mom. She is the only one we've heard of, but don't rule out the possibility of others. A researcher did say that women can rarely show symptoms. But they are not as severe as in males.
toddrallen -- I felt I was always a little clumsier, less endurance and weaker than other kids, but overcame it for awhile through working out.
michael -- My twin Sister tested positive with no symptoms, She has three sons.
terryw -- I want to know more about women also. This is one of the questions for the questionnaire. Does anyone know of a woman in their family that has symptoms?
arnold -- Terry -- like I said, my grandmother (my dad's mom) -- no chance for me (I'm adopted)
toddrallen -- My mother's onset was later than typical for males but has been quite severe, esp. cramps tremors, muscle atrophy & choking.
terryw -- Todd: How old are you?
toddrallen -- I am 36.
toddrallen -- I have 50 repeats, my mother has 51.
toddrallen -- My mom is 62.
arnold -- I have to get going, the school where I work has a computer training course today for all of us teachers -- take care everyone
pomerol -- what is the meaning of repeat ? is t an important factor ?
terryw -- The "repeat" is the CAG repeat. I believe it is the string of proteins. I will research and get back to you on its definition.
toddrallen -- By repeat, I mean the number of CAG repeats in the gene that they test for to confirm the SBMA diagnosis.
pomerol -- I should read another time my diagnosis!
terryw -- Most KD individuals have CAG repeats between 35-60... This is an estimate. I'd have to look it up. Its on the website under symptoms. The normal repeats is 19-30.
arnold -- Okay -- I'll try to get my dad on it! Cheers, Suzanne
bob-harkins -- I suspect my grandmother also had symptoms given what I know now. However, she died over a decade ago, so there is no way to confirm the fact.
toddrallen -- My guess is that at the higher repeat counts, 60+, women probably become infertile, limiting the diseases progression through the generations..
arnold -- {goodbye arnold}
terryw -- By the way, we're still fighting with Yahoo and Geocities to FIX THE WEBSITE!! Their server died and they are trying to restore all websites they host for free.
pomerol -- thanks terry,  for the next chat, are you planning to focus on specific item ?
terryw -- Any suggestions?
terryw -- Any suggestions for the next chat subject?
pomerol -- I'll think about it and come back to you by mail Terry
toddrallen -- I think this went pretty well. It would be great to get a get for Q&A such as Diane Merry..
terryw -- That would be great.
toddrallen -- oops, I meant to write guest..
pomerol -- Q&A ? what does it mean ? excuse my poor English
toddrallen -- Questions & Answers
terryw -- Todd, I agree. That's a great suggestion. I'll try to get a hold of her next week.
bob-harkins -- Terry: I will also think about possible topics and get back with you.
terryw -- It's approaching 8:15 and we want to warn you that we have a 15 minute grace period. The system will kick us off automatically.
michael -- Has any one needed to use American Disabilities Act when having problems with job performance.
terryw -- I have not had to use the American Disability act. My employer, Countrywide Mortgage, has been wonderful. They've put in ramps and automatic door openers, let me use the freight elevator, rebuilt my cubicle to a larger size to accommodate the wheel chair and even paid $1,000 for a lift on my wheelchair so I could access high keyboards in our server room. I hope I never face a fight with an employer. I'm concerned about facing a
fight with the insurance companies when it comes time for going out on disability eventually.
toddrallen -- My mother did eventually manage to get disability but it was quite a struggle as women are not supposed to be affected by KD.
toddrallen -- My mother was an RN in a hospital. They are not so accommodating for disabled workers..
terryw -- Todd: Your mom, via emails with me (Susanne) sounds like an amazing woman. She's quite "spunky"! Being a nurse, did that help her in this pursuit?
toddrallen -- I'm a computer programmer, so I can probably work until
extremely far gone.
terryw -- Todd: We were writing at the same time. Wow, wonderful to know our nurses are being taken care of... Got to love disability insurance and the fight for it.
toddrallen -- It took her a very long time to get the disability. It took many tests to prove severe nerve & muscle damage.
terryw -- Todd, meant her pursuit of disability insurance coverage, but looks like it was difficult.
toddrallen -- In what fashion do you mean "pursuit"?
terryw -- Todd: Understood!
michael -- I'm am a Corrections Officer At a State Prison. They have made some accommodations for me. But I feel that I will not be able to do this too much longer.
terryw -- Michael: Wow, that's quite a job. I'd imagine very physical at times. That's got to be tough on you.
toddrallen -- I've still been able to keep my condition confidential from my employer, but some of my coworkers realize something is up..
pomerol -- I used to be Deputy Managing Director Catering company on motorway and railway stations New shareholder (Benetton) gave me opportunity to reduce my job I work only every afternoon 4 days a week.
michael -- Yes It is, That is why I will not be able to do it much longer. They told me that I could work in records which is a lower paying job, but less physical.
toddrallen -- I was really glad to hear more of others symptoms. I have scanned Medline which is how I figured I had SBMA, but it doesn't contain detailed clinical symptomatic information.
pomerol -- ok for Q&A I'll ask my friends in France and do the translation for next chat
terryw -- Well, wrapping up, what did you think of the first chat? Helpful? Will you return? Will you ask your friends and family to join?
toddrallen -- Yes, it was very good. Thanks!
melski -- {welcome melski}
toddrallen -- Hi melski, looks like you got here just as were leaving..
terryw -- Welcome Melski, We're just wrapping up. I'm sorry. But you can read the transcript. It will be posted on the Chat link. Where are you from?
bob-harkins -- I though it was very good and look forward to future chats.
Take care all
pomerol -- thanks terry for this chat, great idea it was a real pleasure to talk with all of you I 'll be here for the next chat
melski -- Sorry about that!!! I will read previous messages after you folks leave. Glad the room got started
melski -- I am from the Phoenix, Arizona area. The Valley of the Sun
terryw -- 5 Minutes til auto shut off. Take care all, We'll be heading out soon.
toddrallen -- Ok, bye folks!
terryw -- Melski: What is your name? First if that's all you'd like to put.
melski -- Larry Malinoski!!! A good Irishman. RIGHT!!!!
terryw -- Thanks everyone for coming. We look forward to chatting with you in the future. Take care and goodbye.
kdfl -- {welcome kdfl}
jean-s -- This chat is a good experience, but a little bit difficult exercise for frenchies ! however I will follow the next one. thank you Terry
terryw -- Larry, of course!! Thanks for coming in, sorry we're heading out now.
bob-harkins -- terry: good show. Thanks for your leadership. I will stay in touch. Bye all
melski -- Terry: Thanks for setting up the room. Will get here earlier next time!! Take care and have a good weekend.
terryw -- Hi KDFL, We're just wrapping up now. You can read the transcript on the chat line page. It will be posted there. Where are you from? What is your first name?
melski -- Terry
terryw -- KDFL Thanks for joining us. We're heading out soon. The system
kicks us off automatically at 8:30 a.m.
pomerol -- well it is time to go !!bye everybody take care Jean-Jacques
terryw -- Another Chat session scheduled in 2 weeks at the same time. Saturday at 7:30 a.m.
terryw -- 7:30 a.m. (p.s.t.)
michael -- I want to thank everyone for sharing all your information. And Terry Keep up the good work, I commend you.
jean-s -- Good bye everybody, take care - Jean
terryw -- Goodbye, Au Revoir, Adios, Aufitizin?, Chow...
toddrallen -- {goodbye toddrallen}
pomerol -- goodbye and have a nice week end
terryw -- {goodbye terryw}
jean-s -- {goodbye jean-s}
pomerol -- {goodbye pomerol}
jean-s -- {welcome jean-s}
jean-s -- {goodbye jean-s}