Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I thank God there are so many who will share their story to give others hope!"

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript


Topics: How SBMA affects family & friends..

Chat Participants:

  • susannew
  • gryphon
  • jean s
  • yves
  • phoenixet
  • don48312
  • kdfl
  • Fergi
  • gil
  • michael
  • llb
  • gary
  • bob
  • melski
  • toddrallen
  • smiley


phoenixet -- {welcome phoenixet}

llb -- {welcome llb}

llb -- Hello

susannew -- {welcome susannew}

susannew -- Hi

phoenixet -- Hi llb. I guess we are early

susannew -- The chat officially begins at 7:30 a.m. But it allows people to start getting in around 7:15.

llb -- Hi susannew

susannew -- LLB:  Are you new?

llb -- yes, this is my first time.

susannew -- LLB: Is this Lori?

llb -- Yes. Glad to be here.

susannew -- Hi Phoenixet!

phoenixet -- hello Susanne

phoenixet -- How are you doing?

susannew -- I'm doing good. Recovering from a minor surgery on Thursday. How are you both?

phoenixet -- It is a cold winter day here in Connecticut.

llb -- It is really chilly here in South Dakota with a blizzard coming in tonight.

susannew -- Its grey and amazingly, rainy here in Southern Cal! It was 78 degrees last week. Our weather bounces around and can't decide what it wants to do.

phoenixet -- I dont envy you llb

gryphon -- {welcome gryphon}

susannew -- A blizzard! Wow, I wouldn't know what to do! I've never lived in snow.

llb -- Will there be any doctors on today? Hi gryphon

susannew -- Hi Patrick.

yves -- {welcome yves}

yves -- hello, everybody

susannew -- Patrick will be hosting and leading today's chat session.  Patrick was added to the KDA Board of Directors and is our Secretary.

llb -- Hello yves

susannew -- Hello Yves.

smiley -- {welcome smiley}

susannew -- Hi Smiley? Are you new? Where are you from?

llb -- hi smiley

smiley -- Yes this is my first chat

susannew -- Smiley, are you on the Kennedy's Disease Association mailing list?

smiley -- I am not sure.

susannew -- If you would like to, give me your name here. If not, email me

at This email address is being protected from spambots. You need JavaScript enabled to view it. and we'll make sure to add you.

don48312 -- {welcome don48312}

gryphon -- {welcome gryphon}

gryphon -- Hello, my name is Patrick Griffin. I will be the moderator today. You can      call me Patrick, or you can call me Pat, whichever you prefer.

susannew -- Hi Don. Welcome.

llb -- Susanne, did you get my message this morning? We'll talk later.

susannew -- LLB: Yes, but just got up out of bed and Terry told me we have an email from you. Have not read yet! Sorry.

llb -- That's okay.

gryphon -- I apologize for being late. forgot I had to switch from IE to Netscape in order for this to work for me. I'm OK now.

yves -- some others european patients are with us also? but they don't write in english, but read well.

susannew -- Yves: Glad to have them. Sorry I don't write or read other languages.

(What I believe to be a downfall in the American Education System.) Would love to be fluent in other languages. Just know a little Spanish...

gryphon -- This chat session's focus will be on family reactions to KD.  The holidays are almost here. For most people it is a time of joy, but  it can also be stressful.   Some of us with KD will be seeing family and friends who we've not seen for a year or more. How will they react and how will we deal with it?

don48312 -- hi all. i was waiting on the sign on screen and it wouldnt let me in after 10:15. I had to go out to mda home page and re-enter chat sign on screen

don48312 -- I'm on AOL just like you. only mentioning it as 1/2 of internet suscribers       are on AOL.

susannew -- I'm not on AOL. We can mention the problems you are having with the

MDA chat to the MDA, but this is their chat to program. Not within the KDA's control. The KDA cannot afford a chat program of its own at this time.

don48312 -- sorry

susannew -- Anyone here with AOL other than DON?

gryphon -- AOL has a lot of problems with email, downloads, graphics, etc. between AOL users and any other ISPs. AOL to AOL works great, but that seems to be about it. I think that is the AOL plan: world domination through incestuous communication. ;-)

phoenixet -- Has anyone heard of "firetalk"

susannew -- No, assuming its a chat session... You can email us with suggestions at This email address is being protected from spambots. You need JavaScript enabled to view it.

phoenixet -- It is a program that allows talk and chat in private rooms and it is free

fergi -- {welcome fergi}

susannew -- Welcome Fergi. Where are you from? Are you on the KDA mailing list?

fergi -- yes , of course. I´m from Madrid Spain

yves -- It's the french telethon today, We hope to collect 100.000.000 dollars

yves -- so, Fernando could write in spanish

fergi -- por supuesto. Para mi es mejor

susannew -- Hola Fernando,Bonjour Yves, Guten Tag for anyone from Germany

and An-young-ha-say-oh for anyone Korean!

fergi -- Yves, nosotros tambien podemos hablar a traves de AIM

gryphon -- Hola, Konichi wa, Was ist los, Ca va, and Wazzzzup?

fergi -- don, my nickname in aim is : fernando240448

don48312 -- Fergi, AIM?

fergi -- don give me your nick for AIM and will talk through it .

don48312 -- gergi, u mean aol. my screen name is don48312

melski -- {welcome melski}

jean-s -- {welcome jean-s}

susannew -- Good morning Jean.

jean-s -- Hi, everybody it's Jean from France

gary -- {welcome gary}

susannew -- Good Morning Gary. Where are you from? Are you on the KDA mailing list?

gary -- Good morning Susan. I live in Kansas City, KS.

susannew -- Gary, are you on the KDA mailing list? If not, email us at This email address is being protected from spambots. You need JavaScript enabled to view it. and we'll add you.

gary -- Yes, I am Gary Uchiyama. I am in your KDA mail list. Thanks.

gryphon -- Hi Gary! I live in Washington, KS, on the Nebraska border about two hours west of St. Joseph, MO

gryphon -- We can chat about everything, but occasionally let's try to go back to our goal for this session: focus on family reactions to KD. The holidays are almost here. For most people it is a time of joy, but it can also be stressful. Some of us with KD will be seeing family and friends who we've not seen for a year or more. How will  they react and how will we deal with it?

llb -- Good topic for this morning, I have my two daughters ages 10 and 12 here also. We just recieved my husband's wheelchair, scooter and such yesterday, kind of a hard day.

susannew -- LLB: Did your children go near the chair or play in it to get them familiar with it?

llb -- Yes, all of my children did, my sons ages 15 and 19. But it is not their chair, so just tried it out. I think Duane (my husband) will get a lot of benefit out of this.

susannew -- The day Terry got his chair I resented it, but soon learned of its benefits.

phoenixet -- Some thoughts on today's subject. I think the hardest part about seeing family and friends you haven't seen in a long time is answering the same questions over and over. I realize they are asking because they are concerned but I would rather focus on their visit. I spend enough time dealing with KD and like to put it in the backburner as often as possible and just enjoy their company. But how do you get that message across without seeming rude?

gil -- {welcome gil}

gryphon -- As an example, a little over a year ago, I attended my nephew's wedding. My siblings are scattered across the country, and my middle sister, whose son was getting married, had not seen me for some time. I didn't feel much different, but she remembered me from the last time we met. When she saw how much I had progressed, she broke down in tears. I didn't know what to do and I felt bad that I disturbed the wedding. Does anyone care to share their similar experiences?

phoenixet -- I know how you feel gryphon, sometimes I almost want to avoid seeing people I haven't seen in a long time

susannew -- Terry and I have not noticed any friends having issues with SBMA. Which I have found surprising. It has stopped us from doing certain things with them like the hiking, biking, camping, rollerblading, bowling, but now we opt for the movies.

susannew -- Phonexet: This must be difficult. Our friends and family have been there right along with us from the start of the disease. As you know, Terry and I are very vocal about SBMA and update everyone in a sentence or two (sometimes its just a quick, Terry's doing fine, about the same or perhaps Terry's doing fine, has progressed a little) and we leave it at that and move on to hanging out.

jean-s -- Usually, members of my family avoid to made comments about my disease and its progression. It's true to said that this progression is very slow...

gryphon -- Jean-s, I have had that reaction, too. Especially with my brother, who seems not to have the KD trait.

susannew -- We also type a holiday greetings letter every year that gets mailed out to about 200 friends/family and in it I put a quick update about Terry and SBMA without focusing too heavily on it. This year I included a couple paragraphs about the KDA and how they could contribute.

susannew -- My brother-in-law has been closer to Terry since the SBMA diagnosis. He is starting to show symptoms, and I think this is what is drawing the two together more tightly.

gryphon -- I enjoyed your Christmas Card, Susanne. For me, another issue: what do I say on Christmas cards? I'm unmarried, and I've found myself not sending them because I don't like to talk about my problems. What do you do?

smiley -- How do you get through the holidays without everyone dwelling on it. I am a carrier with small children. No one knows what their future holds and don't want them to be scared by all they hear.

susannew -- Its an individual choice of course, not everyone is as open as Terry and I are. It can be brief or detailed, your choice of course.

don48312 -- we also use an annual xmas letter to update family about progression.  They do want to know, but are embarrassed to ask

llb -- Our friends and community have been very supportive and very helpful with our children being the ages they are, but they really do not know very much about the disease. What is a good way to spread this information?

susannew -- LLB: Refer them to the KDA web site if they have internet access. We hope to be writing brochures, educational material soon and posting to the web site where anyone, including you, can print and hand out.

don48312 -- a good way to give information about this disease is pass out this site address

gryphon -- My nephew (and his wife) who I mentioned earlier, who just got married, is likewise concerned. I usually just give them as much information as possible, let them absorb it, the wait for specific questions. Knowledge seems to reduce anxiety.

jean-s -- Patrick, I think holidays is a good opportunity to talk about that once a year,        don't you ?

susannew -- I don't like to let family "dwell" on the SBMA. We are fortunate it is a       slowly progressing disease and that it is not fatal. We are hopeful for a cure with the Gene research and therapies being worked on.

gryphon -- Yes, I agree. I'd like others to let me know what the best way is, though. I       don't want to be a wet blanket at a festive occasion...

susannew -- In fact, I don't like to dwell on "SBMA" if I can help it. I try to be positive and proactive. But as a wife, its not always easy.

susannew -- Terry's mother seems to be taking the SBMA the hardest... She feels

guilty for giving it to him. Imagine this, not her fault, but she believes it is.

don48312 -- my mother felt the same way before she died.

jean-s -- I think all mothers think the same, even we try to unguilt them

gryphon -- It's may seem sad, but my Mom passed away (from cancer) before I was diagnosed. In a way I'm glad. She was a great woman and would have felt very guilty knowing she passed the trait along to me. After all, I was her "favorite son",

although my younger brother would disagree. ;-)

don48312 -- Fergi, two weeks ago they cancelled this chat. that is why there were only 3 of us in it. they are also cancelling the chat 2 weeks from now. just letting you know

yves -- My wife want to know how the disease will progress (during next 10 years)

susannew -- Yves: I don't think anyone can answer that, only make assumptions. Everyone progresses so differently from each other. SBMA individuals do not take the exact same path. Just similar ones.

gryphon -- Progression tends to vary to the individual. Some early reseach indicated that the amount of CAG expansion was related to progression.  However,  that is somewhat in doubt now.

gryphon -- It also appears that people who had trauma (nerve damage caused by back injuries, infections, broken bones, etc.) progress faster, or at least more in relationship to the trauma site, than those who have been otherwise healthy.

yves -- So your questionnaire will be helpful

susannew -- Yves: We are hoping it will give some very good indications and correlations.

yves -- about the questionnaire, a french researchers is very interesting with it

yves -- I can help us to complete

yves -- Thanks Suzanne

llb -- Does anyone else have any problems with trunkal spams that last all day, every day which my husband finds very uncomfortable but can not seem to settle it down? Also a rising CPK level?

gryphon -- I have spasms in my back, related to both previous back surgery and KD. I also have spasms in my abdomen.

fergi -- I think , I am one of the older in these meeting with Kd history.  I was diagnosed in October 1992, but since 1988 I had symptoms of weakness in my muscles

llb -- My husband started with tremors at age 20 and was told it was probably due to high blood pressure. Just after an accident did the symptoms really seem to take off and they seem to be progressing a little faster than what the doctors had first said.  yves-- What do you think about electric wheelchair....a doctor said is better to have an electric chair to the

usual work....and keep your legs to walk in relaxing way.

phoenixet -- yves, I agree with your doctor

michael -- {welcome michael}

jean-s -- yves, I will go next next week to a wheelchair specialist to study the opportunity to use it. I think that an electric one is a better solution for us.

gryphon -- RE: Yves, electric chair. I do not have one, though I have a manual chair. I was advised to delay getting an electric chair as long as feasible in order to keep more active and to delay letting my muscles atrpohy.

susannew -- Terry believes the electric chair is the way to go, because it saves his upper arms. Its harder to travel with, so we take the manual then, but has made it easier on Terry (and easier on me since I'm the one usually pushing that manual chair if we're out moving around for a while.)

fergi -- Yves, I use a wheelchair electric since two years ago.It is best to walk with other peoples. I also, use a manual wheelchair when I talk in flat ground as a trades centers or supermarket.

llb -- The hardest part is the not knowing what the next day will bring.  Duane is having a lot of problems with his swallowing and such. Hard to know exactly what to do or what to tell the kids or others.

don48312 -- has duane had a swallowing test iib?

llb -- yes. It showed wasting at the back of the tongue in some of the muscles.  Seem to be progressing along with loss of some vocal cord strength.

don48312 -- the doctor who gave me the swallowing test gave me exercises to do to strengthening the throat area.

llb -- We were not given any exercises for throat strengthening, does it help?

gryphon -- Don, can you describe the exercise?

don48312 -- im just in the process of starting them. they consist of a set of 21 exercises that take 5 - 10 minutes to do. an example would be pucker for a kiss, hold, relax. i will do 2 times a day don48312 -- can do in car, sitting, standing, playing football, etc.......

don48312 -- I could e-mail to anyone if you like, or e-mail to KD site for inclusion

yves -- fergi- Thanks a lot

susannew -- Don, do you have the exercises on a paper given to you from the doctor demonstrating the exercises? We could post to the web site.

gryphon -- Don, I had a mental image of me doing that while waiting in line at a cash register in a store. I'd probably get arrested, or at least get very strange looks! =:-O

susannew -- Don, sounds good. Just read your earlier response.

smiley -- I would like to have the exercises posted on the site too. Have a few relatives that might be interested in trying it.

don48312 -- I have it on the computer sue

don48312 -- sue, I will e-mail u the exercises

susannew -- Thanks Don, looking forward to them.

llb -- That would be great Don.

gryphon -- Ditto, Don.

don48312 -- i usually wait till there are lots of pretty woman around, lol

gryphon -- OTFL

susannew -- What's OTFL?

gryphon -- On The Floor, Laughing...

jean-s -- thank you for the frenchies !

gil -- I had a swallowing problem and had surgery to relax the ring at the top of my

esophagus. it has helped a great deal but this may not be for everyone.

llb -- I know that I am new here, so a lot of questions, but is anybody using Creatine or Vitamin E?

susannew -- Terry tried Creatine, did not notice any results. I believe others have though.

jean-s -- In France you don't use vitamins like in USA, we are a little bit skeptical !

gary -- I tried Creatine, too. It didn't help me either.

don48312 -- I was using creatine, but doctor took me off as they thought it was effecting my kidneys

melski -- {welcome melski}

gryphon -- I take relatively big doses of Vit E, and other anti-oxidants.  My doctor said it could help. The only thing to be careful about is fat-soluble vitamins and others that can build up in your system. Most water soluble vitamins are excreted easily.

michael -- IIB I used Creatine and it made my muscels bigger in my legs, but it made me weaker. If that makes any sense

gryphon -- In my reading about Creatine, and other muscle development supplements (e.g. andostendione), it seemed they work best with healthy neurons.   Without a lot of workable neurons, big muscles still won't be functional. In addition,  they all have some negative side effects.

llb -- Anything else that is helpful?

fergi -- I take MESTNON , is a medicine indicated for "miastenia gravis" but in our case permit have a bit stronger muscles during its effect. Its effects are  long about 3 or 4 hours, so, I take 1 and 1/2 pieces every 4 hours.

jean-s -- fergi, I took also Mestinon many years ago, at the beginning of my symptoms, but I didn't find benefits at that time

smiley -- How do you tell your very young son and at what age that there might be a possibility that they may have Kennedy's.

llb -- On the same line, how do you tell your daughters that they are carriers and how this might affect them.

susannew -- Smiley, We do not have any children and I do not have a good answer for you. I think again, this is an individual decdision. Your son will not be affected if you are the one with SBMA. If your wife is the carrier, then he has a 50/50 chance of getting the gene.

kdfl -- {welcome kdfl}

smiley -- llb - I too have a daughter and not sure if she is a carrier.  Which is worse to have to tell the son or daughter. Probably equal. I am the mom and carrier.

susannew -- Smiley, sorry, assumed you were a man... we all know what happens when we assume.

susannew -- I think it would be best to get a privately done Kennedy's blood test where the information would not be released to any medical office or the Medical Information Bureau to see if you children are carriers or have the gene. This way,  you may find out there is no need to tell them, if they don't carry the gene. Of course there is a cost to doing a test like this that you wouldn't want to let insurance pay for or else they'd have the results.

don48312 -- my doc tested my whole family with a DNA test.luckly, nobody else was affected

don48312 -- no cost

smiley -- Heard that there is still a chance that insurance companies can find out about a private test. Then it could cause problems for the kids later.

susannew -- The KDA will look into finding a facility that would agree to keep tests


jean-s -- From the beginning of diagnosis 10 years ago, I have said to all my children what I know about this disease. I thought that is better, even if that is an hard problem for my daughter.

don48312 -- sue, that is why I am balking at putting my name on the KDA'S membership list that is public domain, Ii think

susannew -- I can understand that Don. There are many others who feel the same way and we respect their privacy. However, those not listed on the email list can initiate an email anytime to chat with others!

don48312 -- i understand sue

gryphon -- The list is not shared with anyone but the KDA associates, is that not correct, Susanne?

susannew -- The main list is only shared with the Board of Directors and is kept private. The contact list in which those listed have given permission is shared with anyone who asks for it or lives with SBMA. The web site contact list is out there for all to see and again, lists only those who have given permission to be there also. There are some individuals on the emailed contact list that if you compare, are not listed on the web

site at their request.

gryphon -- Susanne, is there a way, perhaps after we move the list to a private server, to password protect the members' names from the general public?

susannew -- Gryphon: Lets discuss at the next board meeting. Anything can be done, but costs and other issues might be involved.

smiley -- This may sound silly but who are the board of directors?

susannew -- Susanne Waite, Executive Director, President Terry Waite, Vice President, Treasurer Patrick Griffin, Secretary

susannew -- Terry and Patrick have SBMA. I am Terry Waite's wife.

smiley -- Thanks

gary -- I thought I would need a wheelchair sometime this year.But I tried to lose weight. It helped me lots. Of course it is a temporary solution.

don48312 -- gary, fight it as long as you can

don48312 -- i am

gryphon -- Gary, I'm not able to get much exercise. Before KD, I ran about 5 miles a day, and never had a weight problem. Now, anything I eat (and I eat relatively little),  I still seem to gain weight, or at least not lose it. How did you lose weight?

yves -- The problem is losing weight without losing muscles

gryphon -- Yves, that is a good point.

gary -- I lost 25 pounds. My muscle looks very skinny, but I believe I lost fat and didn't lose strength.

llb -- Did you just cut back on calories or portions or what?

susannew -- Terry has also noticed he's gained weight since the SBMA diagnosis... He's recently lost weight cutting out soda's, fast food, and drinks more water.

gryphon -- Re water: I find that drinking a lot of water gives me more energy, reduces cramping, helps digestion, etc. Oh, yeah, and the trips to the bathroom give me plenty of exercise. :-)

toddrallen -- {welcome toddrallen}

toddrallen -- Hi, this is Todd & Sara

susannew -- Hi Todd and Sara.

don48312 -- hi todd & sara

gryphon -- For information and advice about genetic issues, try the National Society of Genetic Counselors, on the Web at

kdfl -- I have a cousin who is a doctor and worried about it affecting his job if his supervisors find out

michael -- {goodbye michael}

susannew -- KDFL: If he is a surgeon, then I understand. If he is a regular counsellatory doctor, then I don't! It would be discrimination.

don48312 -- {welcome don48312}

susannew -- Sorry Don... Kicked you off again I see.

don48312 -- no, kicked myself

susannew -- Is there anyone else here on AOL?

phoenixet -- I am

don48312 -- i only have 2 speeds, slow and stop, don't get into slow often, lol

llb -- The holidays will be rough being this is our first year with this diagnosis, so I expect a lot of questions and this has helped me in ways that I could possibly respond, thanks.

don48312 -- iib, as most have access to a computer, just give this site address

susannew -- Psuedonyms: Gryphon = Patrick Griffin Susannew =

Susanne Waite

don48312 -- don = don

gryphon -- To new participants, my name is Patrick. FYI, I also built a KD Web site and met Terry and Susanne via the Internet. I am 50, unmarried, no kids, live alone in rural Kansas, am a retired (last year) Army Medical Service Corps officer, and am lucky to have the VA provide me with medical care.

susannew -- Terry had a web site out there because when he was diagnosed 4 years ago, we could not find much information anywhere. So Terry posted what he had collected, some links and his personal story. Over time, the list of those signing the guest book grew. Last June at the Families of SMA conference, Terry and I met others with KD, including Patrick, face-to-face. It was time to start the KDA. So we took Terry's web site and turned it into the Kennedy's Disease Association's web site and started the search for an attorney to help us pro-bono to get incorporated and apply for non-profit status (which we now have.)

susannew -- Many of you have been along on this ride since June 2000. Thanks for your support!

llb -- I think the web site is great.

susannew -- Thanks Lori. Any one else have any suggestions for the web site or topics for future chats?

don48312 -- I think site is just great. a definite asset

don48312 -- well show our thanks in Jan sue

susannew -- Thanks Don, looking forward to it!

susannew -- And to those who are new, welcome!

don48312 -- sue; do you plan to put a copy of the IRS Determination letter on the KDA site?

susannew -- yes!

jean-s -- Susan, congratulations for the birth of your KD association.  Yves and I hope that a french association start soon with other french KD

yves -- European researchers are waiting for the result of DR Diane Merry

kdfl -- KDFL - -John Mengel

don48312 -- hi John, neighbor

gryphon -- John, are you related to the genetics pionere?

kdfl -- No relation to the genetic pioneer

don48312 -- i had lunch with kdfl and his wife last week

llb -- llb--Lori Benson, Duane, husband has disease.

jean-s -- jean-s : jean sagnier

yves -- yves Yves Martin

fergi -- Fernando Ginés Ortega

gryphon -- How about a little more discussion of how you deal with KD and meeting friends and relatives who you've not seen for awhile, such as during the holidays?

gary -- OK, I will send you email later, gryphon.

yves -- I have you receive documentation

susannew -- I know Jean, that's so wonderful. You will be able to reach others in French, you'll probably pick up some individuals from Canada also.

gryphon -- jean and yves: Let's hope FKDA is not misunderstood for French Kissing Disorder Association... :-)

kdfl -- Liked your remark gryphon

jean-s -- Patrick, OTFL !

yves -- DR Fischbeck has spoken about DR MERRY Doc next month

susannew -- Yves, I don't understand... Dr. Merry and Dr.Fischbeck are doing what?

gryphon -- We have about 15 more minutes on the schedule. Does anyone want to add something about KD and the holidays?

gary -- Terry and Susanne, thanks lots for contribution for KDA since you opened the    web site. Its helped me lots.

llb -- Would like to visit with Dr. Fischbeck sometime. Lots of questions.

yves -- Dr Diane Merry have to prepare a paper about genetic research

gryphon -- Susanne, what is the date of the FSMA conference? Is not Dr.Fischbeck going to attend?

susannew -- Dr. Fischbeck will most likely be at the Families of SMA conference in June in Chicago. We have this information listed on our web site. You will need to register soon as the FSMA conference usually sells out and the hotel only has so many rooms available. The FSMA is granting the KDA a room where we can meet on the topic of SBMA for an hour or two.  Still working out the details with Audrey at FSMA. We'll let you know more when we know more!

llb -- let me know how to register.

don48312 -- does anyone what time the Conference in CHI TOWN will start, and end?

susannew -- Don: Chicago conference is in June, I think somewhere around the 21st'ish... It runs for 3 days. Not all sessions will be applicable as the FSMA Focuses on SMA types I, II and III. III is adult onset, but it is sometimes good to meet them and see how they are handling their disability which is similar to SBMA, but not exact. They do not have the bulbar symptoms.

susannew -- I'd go look up right now the dates on our site, but fear I'd get logged off the chat and Terry is not here right now to get me back in.  He knows the password!

don48312 -- i know sue as i have attended before. but what time??????

susannew -- What time is the KD session? I don't know yet. We have to see what

FSMA does with us. Its their conference, we're piggybacking for free.

don48312 -- not just the kd session. what time does conference start and end?

don48312 -- 8 am, noon, etc

don48312 -- I can find nowhere on KD or FSMA sites

susannew -- Some of the FSMA sessions are applicable also as they deal with general topics. Last year we went to a panel of adults who answered general questions from the audience, information from sleeping problems to traveling... Also, went to Couples, when one of you has a disability session that was good.

susannew -- Don: I don't know, please go to our site afterwards and go into FSMA

Conference. Their web site has all the information you need!

susannew -- If times aren't there, we'll try to get and post on the KDA site.

toddrallen -- I'd be interested in a chat about mechanical aids such as scooters, chair lifts, etc. and people's experiences with these products.

kdfl -- Todd, Good suggestion

llb -- That's a good idea. Wish there was some further research being done.

don48312 -- thought i would mention, my new MDA DR proscribed mw a drug called Neurotin that is suppose to help with swallowing.

gryphon -- Don, I have a pretty good contact list of aids like that. It was deveoped by an ALS group. I'll add it to the KDA Web site. Or I could send it to you via email. It would be a good beginning point for a chat.

jean-s -- Today in France that is the Telethon, but unfortunately I think nobody will talk about KD, may be next years...

susannew -- Jean: Call them up!!! Talk to them about KD!!!

jean-s -- Susan, we have talk about KD to the AFM, but we will try again and again !!!

susannew -- Persistency is the key to everything in this world!

smiley -- FYI - think it is important how we relate Kennedy's to children that potentially could have it or be a carriers. Their future could depend on it as well as the type of attitude they have.

susannew -- Smiley, I agree with you. I'm sorry I truly cannot respond as I am not

faced with your situation and would believe my answers to be way off base. Do others have suggestions of how they have or plan to relate to their children they may have SBMA?

llb -- I have not decided quite yet how to approach this situation or at what age to begin?

smiley -- definitely think you should not tell kids when they are teenagers. Too emotional.

jean-s -- Susan, is that the subject of a Chat session to come ?

susannew -- What's that Jean? What topic?

jean-s -- Susan, topic : careers

susannew -- Good one Jean. We'll put on the site for a chat in February or March!

jean-s -- Good bye everybody have a good holidays and see you next year !

susannew -- Goodbye Jean. See you all on the chat after the new year!

susannew -- Have a wonderful holiday!

don48312 -- thanks sue

phoenixet -- Good bye to all. It was good chatting and listening to everybody. Hope all have a good holiday season.

llb -- See you later. Happy Holidays.

don48312 -- Merry Christmas and Happy New Year to alkl of you. See you all next year

fergi -- Jean - Yves , and I continued talking for AIM line