Kennedy's Disease Association

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"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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Kennedy's Disease Chat Transcript
7-14-01
Topics: Spouses & Significant Others

Chat Participants:

  • Susannew
  • bobcandy
  • lenj
  • paulag
  • phoenixet
  • teda
  • butch
  • chuck
  • kdfl

Begin Chat

bobcandy -- {welcome bobcandy}

susannew -- {welcome susannew}

susannew -- Good Morning!

lenj -- {welcome lenj}

bobcandy -- Good Morning. I'm Bob and my wife Candy is with me.

susannew -- Thanks Bob for having Candy come online with you!

susannew -- Bob and Candy, where are you located?

bobcandy -- Ohio.

susannew -- bobcandy: are you in the Kennedy's Disease Association's member list?

bobcandy -- Yes. I'm Bob Calder. I was on the original list. This is only my 2nd chat.

susannew -- Aha! Now I recognize the name. Thanks Bob.

susannew -- Good morning Len or is that you Jeanne?

lenj -- Hi, it's Jeanne

susannew -- Jeanne: How's the weather in New York?

lenj -- It's sunny and cool, Len is leaving me to do the chat alone

susannew -- Terry's off running around the house somewhere himself.

paulag -- {welcome paulag}

susannew -- Good morning Paula! How are you? Are you fully recovered?

lenj -- Paula, did you get my get well card?

paulag -- Yes, I did. Thanks you so much.

paulag -- I have a couple of fractures and am using a walker. Mike and I are getting a real taste of role reversal. It's interesting

susannew -- Mike didn't tell us fractures!!! How long will it take to heal?

chuck -- {welcome chuck}

paulag -- They say usually 6-8 weeks, but it doesn't hurt much anymore.

lenj -- Paula we feel so badly about what happened, hope you are on the mend.

paulag -- After the experience I've been having, I wouldn't recommend a walker to anybody. They're too cumbersome, and there's no way to carry anything - not to mention the difficulty maneuvering through doorways

lenj -- Just for the record during this chat lenj is me,jeanne.

susannew -- Good morning Chuck. Is this Anna Lea?

chuck -- Yes, this is Anna Lea. Enjoyed your Chicago news. Thanks

susannew -- Thanks Anna Lea. I have been traveling over the last 3 weeks for work and the FSMA conference. Have been in Cleveland, Chicago, San Diego, Minneapolis, Las Vegas, and Chicago again. I hope to do some write ups about the conference soon. But am working on other KDA work that needs to be completed first! There's a lot to do!

lenj -- For me meeting the other wives in Chicago helped me as it gave me

support.

paulag -- I feel that way, too. The Chicago trip was valuable in so many ways, but it always helps as a caretaker , to talk with someone else who deals with the same issues.

susannew -- I'm so glad all of you could join us this morning. Wives and significant others need support too. We're all in this together.

paulag -- It's interesting that we should have this particular topic right now. I guess there's a little good any everything. I think Mike and I both appreciate each other's frustrations more now.

susannew -- I broke my foot/torn ligaments about 2 years ago. It does make you realize how much you appreciate getting around easily.

paulag -- How is Len doing, Jeanne? Is he going to get a chair?

lenj -- He's is looking at scooters, found a Harley Davidson one he likes!

susannew -- We saw that really nice scooter at the restaurant we saw in the morning for breakfast. What was it called? Legacy?

lenj -- Wasn't it the legend?

susannew -- Yes, Legend, that's it. It was very nice and plush!

lenj -- But not as fast as the Harley!

paulag -- I think a scooter is probably the best next step after a cane.

susannew -- paulag: I agree. I think going from a cane to an "electric" assistant (scooter, chair, etc.) is best. Terry went from a cane to manual chair for a bout a year and then to the electric chair. I think the manual chair was very difficult for him to push himself (arm weakness) and his arms wasted quickly and became even more weak after a year of using the

manual chair at work on their carpet.

bobcandy -- I have a quad cane and just got a scooter. It's hard getting used to people looking at you but they're great.

susannew -- bobcandy: It was more odd for me than it was for Terry when he first started using the chair. But after a couple hours of getting out and about after not doing much for a year, I soon learned to ignore that he was in a chair and what others might think!

phoenixet -- {welcome phoenixet}

susannew -- phoenixet: good morning. Who is this? I know you've been on other chats, but I forget, sorry.

phoenixet -- Henry capozzi from CT

susannew -- Good morning Henry. Are you married or have a significant other near that can get online with you?

phoenixet -- I am married but she is not at home right now

susannew -- phoenixet: thanks. If she comes home, ask her if she'd like to join in the chat. Today's topic is Wives and significant others. You're welcome to comment or bring up other topics also. We have Len and his wife and Bob and his wife in the chat also.

phoenixet -- Thank you Susanne

paulag -- Have any of you spoken with the other wives from the conference?

lenj -- I have not spoken to anyone since the conference but Len has the group picture as his desktop.

susannew -- paulag: I have not had a chance with all my travel to talk to anyone... barely even Terry. :(

paulag -- Next year maybe we can have a breakout session at the conference just for us. Our guys are so important to us and it helps to know we aren't alone in trying to make thing as good as possible for them

lenj -- {Jeanne} I agree,Paula significant others need support also.

susannew -- paulag: that's a good idea. The Families of SMA controls the breakout sessions, but that doesn't mean if we have it with them again, that we can't have a Wives and Significant Others breakfast! If we decide to have a get together somewhere specifically for SBMA, then a breakout for us is not a problem!

susannew -- Terry posted the photos of the conference attendees to the site about a week ago. I just need to do some write ups about the break out sessions. Lori Benson (a medical transcriptionist) volunteered to transcribe the research meeting. As soon as I get that from her, we'll post it to the site. We do have a videotape of the conference too... go to

www.kennedysdisease.org and go to FSMA conference. Then you'll see information about the video!

teda -- {welcome teda}

susannew -- good morning teda: Is this Ted or your wife?

teda -- It is both of us. My name is Sue

susannew -- Welcome Ted and Sue! Thanks for joining us.

chuck -- I took Charlie to John Hopkins (Baltimore) in June and it was decided it was time for another throat dilation. Did that two weeks ago.

It is helping Charlie swallow better once again. Also working on an appointment date with Dr. Fischbeck in Sept. for our family for some genetic counseling they are offering at NIH in Washington, DC. We have also switched from testosterone weekly shots to daily testoderm patches. I was having difficulty giving shots due to muscle loss. Patches took a lot

of stress off of me. That is the latest news from WV.

susannew -- What do they do in a throat dilation? Is that to help alleviate the laryngeal spasms?

susannew -- or to help Charlie swallow?

chuck -- Charlie was choking a lot. Eating was quite a chore for him. This greatly enables him to eat better (still must eat slowly and small bites). Also, helps spasms some.

susannew -- Anna Lea: What do they do in a throat dilation? What is the

process? Is it painful?

chuck -- Throat dilation = stretching the esophagus. They can do often (sometimes it doesn't work) as long as there are muscles to stretch. He had it done about 18 months ago. His eating was very bad then. They were even talking of a feeding tube. They sedate you lightly. Takes about 45 min. for procedure. Done on an outpatient basis and you are there approx. 3-4

hours. It leaves you with a sore throat for a few days to a week. He really doesn't mind for the results he receives.

susannew -- Anna Lea: throat dilation sounds like a good alternative to a feeding tube. Thanks for sharing that with us. Others who read the chat later will be interested to know about it.

kdfl -- {welcome kdfl}

susannew -- KDFL: Good morning. Hi John. Are you married?

kdfl -- Yes I am married, Susanne.

susannew -- John: Is your wife here with you today on the chat? Our topic is Wives and Significant others. Your welcome to comment and talk about any topic. We have Bob and his wife, Candy, Ted and his wife Sue, Len and Jeanne. I think the rest of us are going solo. Including Henry.

kdfl -- Pauline is looking over my shoulder.

susannew -- kdfl: Great. Welcome Pauline.

paulag -- Sometimes I think I really help Mike, sometimes I feel like he thinks I am overprotective and he feels smothered. Sometimes, I just irritate him and don't know how to help.

susannew -- paulag: I know what you mean. I try to leave Terry to be as independent as possible. Then there are times I can see he's doing something he shouldn't, like pushing himself too hard to walk too long, or trying to carry things up the stairs. I try to stop him cause I know he'll pay for it later. Sometimes, he listens. Sometimes, he doesn't. Its hard

sometimes to judge when I should jump in or not.

bobcandy -- Susanne: We have a 10 year old boy and it's hard for him too to see his dad in a scooter in front of his friends or baseball team. We forget about the kids.

paulag -- I've been on the receiving end of those looks the few times I've been out since the fall. It's a little unnerving to know people are watching you.

susannew -- bobcandy: I can see how that might be a challenge. Terry and I do not have children. How do you approach your son about SBMA?

bobcandy -- I've had the symptoms of the disease for as long as he can remember so it's all he knows. He's good about it but he misses dad being able to play catch with him and teach him how to ride a bike.

susannew -- bobcandy: That must be very hard. I know Terry would like to be able to play with our nieces and nephews. I'm the one who does the roughhousing and sports with them.

butch -- {welcome butch}

paulag -- I think we women take to the nurturing process naturally, but I believe the men have a hard time accepting that they need help. It has something to do with that whole "macho" concept, I think.

chuck -- I really agree with knowing when to help and when to leave them do things on their own. Our local Dr.advises letting him be as independent as possible even when he was going to through a bout of bad depression.

lenj -- [Jeanne] I also worry and am overprotective, then yesterday, I wash the bathroom floor and the one time I'm not being careful and warn him he falls in the bathroom, can't get up etc. but not hurt. I felt awful and stressed, feelings it's my fault for not always stating the obvious.

susannew -- Jeanne: We'll have to get you one of those cones they use at public restrooms that warn the floor is wet. :)

lenj -- [Jeanne] WITH A FLASHING LIGHT!

susannew -- Glad to hear Len wasn't hurt. Falling is a common occurrence with those who have SBMA. Terry has taken a couple falls, but not many, since he uses the chair a lot.

paulag -- It's hard to watch someone suffer the physical and emotional traumas when you love them so much.

bobcandy -- Susanne: My wife likes the orange cone idea. She wants to know if you have any to give out??

susannew -- bobcandy: Maybe we can purchase some, slap the KDA logo on them and sell them!

susannew -- Terry choked last night. That's when I feel helpless. There's nothing I can do for him. Although, last nights bout was over in a matter of seconds. I told him next time, we're going to do an experiment and I'm going to try mouth to mouth to see if my breathing air in will help or not. We'll let you know after we try that if it helps.

lenj -- MOUTH TO MOUTH KISSING CAN BE FUN TOO!

paulag -- You know, Suzanne, some girls will use any excuse to kiss their man.

susannew -- paulag: I guess you've found me out!

butch -- GOOD MORNING ALL: SORRY TO BE LATE. HOPE EVERYONE IS WELL.

susannew -- Butch: Welcome Ron. Is your wife in the chat with you this morning?

butch -- Susanne: Mary Lou is here but she is just trying to gain insight into your roles with your men.

susannew -- Welcome Mary Lou. Feel free to dive in with any comments.

paulag -- Mike & I had dinner with a friend who's totally wheelchair bound last night. She wants to "run" the Peachtree 10k next year in her wheelchair.

susannew -- paulag: Have Mike and others join her in the name of Kennedy's Disease! That would be great.

paulag -- That's not a bad idea. Maybe we could do something like that and take pledges like Tom did for the canoe race.

susannew -- paulag: That would be great. Ed Meyertholen has enlisted in the New York Marathon... He intends to run it in the name of Kennedy's Disease with his sister if all goes well. We'll keep you all posted.

susannew -- Terry is talking about wheel chairing across America in thename of KD. Different individuals with KD could take up different sections as we come across or near their states!

paulag -- Susanne, that would be great! They could hand off a flag or something like they do with the Olympic torch.

paulag -- I think it would be a good idea if those who are interested swap emails and phone numbers so when we need support we can talk to someone else who understands.

susannew -- I think that's a good idea too Paula. Please note: If you do, it is posted to the MDA web site for all to see for quite some time. It might be better for emails now.

lenj -- [Jeanne] I agree it would be a help to have that support

susannew -- Then you can send your phone number, address privately.

susannew -- I'm at This email address is being protected from spambots. You need JavaScript enabled to view it.

bobcandy -- We agree that paulag's idea is a good one.

susannew -- Should we make a wives/significant others and a carriers contact list on the Web site?

lenj -- yes

butch -- {welcome butch}

kdfl -- My email address is This email address is being protected from spambots. You need JavaScript enabled to view it.

bobcandy -- Susanne: We like the significant others contact list idea.

chuck -- Anna Lea is on for Chuck. He doesn't use computer at all.I am

also secretary.LOL My e-mail: This email address is being protected from spambots. You need JavaScript enabled to view it..

bobcandy -- Candy's email is This email address is being protected from spambots. You need JavaScript enabled to view it.

susannew -- Our home phone number is the same as the one on the KDA web site: www.kennedysdisease.org We'll work on putting together a wives/significant others contact list and a carriers contact list on the site.

teda -- (Sue) I like the idea of significant others list you can add us to the list

susannew -- All of you attending don't mind if I put your email and names on the site do you if you've given it here in the chat?

paulag -- Mine is This email address is being protected from spambots. You need JavaScript enabled to view it.

bobcandy -- Susanne: sure

chuck -- You have my permission. Anna Lea

lenj -- [Jeanne] you have our permission to use our e-mail address

paulag -- Boy, messed that last one up, but you know what I meant, right?

kdfl -- My email address is OK also.

paulag -- There's nothing worse than feeling like you are the only one dealing with an issue. I would do anything possible to spare that someone else that feeling.

susannew -- paulag: That's exactly why Terry and I put up a personal Web site 4 years ago and then took the next step and formed the KDA. We don't want anyone to feel isolated, alone, and information-less any more!

paulag -- I think this web site has done more good for people like Mike and me than anything else we've been involved in. The trip to Chicago and meeting everyone there was such a blessing for us.

lenj -- [Jeanne] YES I do that is why the wives should have their own support group on line or staying in contact via e-mail or phone

susannew -- Do any of your husbands (or you) feel depressed at times? What do you do to help alleviate that. Since Terry stopped working, it is an issue. While he was working SBMA couldn't stop him. Now it has slowed him down and stopped him from doing what he wants to do, one of which is work.

paulag -- Mike is incredible. He gets angry sometimes and frustrated, but seldom feels depressed. I don't know how he does it. I find myself having more trouble with that!

kdfl -- My wife does sometimes because we can't do all the things she would like to be doing in retirement. I manage to keep busy and don't have any trouble with depression.

susannew -- We can always arrange with others to get on the 24-hour chat cafe located on the KDA site a time to get together and chat again. Those transcripts are not recorded anywhere, but its a cost effective way to chat with each other all at the same time!

chuck -- I have certainly experienced that alone feeling for many years before we found KDA. Charlie was diagnosed in 1991 and we certainly felt alone in this. I have often felt if a "famous" person contacted KD, it would be more well known which could possibly promote more money for research. Look how Lou Gherigs made ALS so well known. I too really feel this chat line has blessed both Charlie and myself.

lenj -- [Jeanne] Len was used to working two jobs a lot of outside activities etc. He is a people person and all that has come to a halt. I told him he needs to reinvent himself go in a different direction that will accommodate his disability

bobcandy -- Depression can be an issue for both. We assume that he has already considered this but is there any work can they can do by telecommuting? I will probably have to do more of that as the disease progresses.

susannew -- I suppose I have to be honest and say I get depressed to. Our lives are not the same anymore. We have more challenges now, both physically, mentally and financially. We will not achieve many of the goals I had set. I was only 27 when Terry was diagnosed and was just really getting where I wanted to go. I can still go there, but its more difficult.

paulag -- It's funny how life just jumps up and "smacks" you that way.

susannew -- paulag: We certainly got smacked! If there were going to be health issues, my expectations were when we were in our late 40's and 50's on. I didn't expect anything so soon in our lives.

susannew -- Now we have a new focus in life. Its the Kennedy's Disease Association and the friends we've made through the association!

bobcandy -- Susanne (or the group): any suggestions on how to handle goals and dreams no longer attainable because of physical, emotional or financial pressures?

paulag -- I've always talked to myself when things were bad. I would say"This too shall pass", but now we've all run into something that won't "pass". I think it's hard no matter where you are in life, but I do believe it's probably harder if it hits when you are young.

susannew -- bobcandy: What I've done is reset my goals and expectations. It wasn't easy. I had to put some of my now unrealistic goals aside and find new goals. I always say to myself, "tomorrow will be a better day".

kdfl -- I guess we have been lucky then. Ours didn't show up until 55.

butch -- As hard as it is to cope with KD we are so lucky not to have some of the neuromuscular diseases which move much more quickly than KD. There is always a bright side. Just take time to look for it.

lenj -- Bob, make some new goals that are attainable. But set them high enough so that the challenge is still there.

chuck -- Charlie made it until about a year ago on his own and then his depression got really bad. Dr. put him on Zoloft and it has helped greatly. Yes, I too can get depressed, however, I can get out and do things yet. We have two cells so I never go more than a 1/2hour away. Susanne, we want to still go even at our age but we both know it can be very tiring on the spouse when we are in charge of ALL. We are older than any of you and my heart goes out to all of you for being hit with this at such a young age. I feel it is much harder for you all than for us. It is really learning to live a new life and telling or convincing yourself that you are or must be satisfied with it. Age - I am 69 and Charlie is 73.

paulag -- We found out when Mike was about 40. Now, we are both 53.

susannew -- butch: I agree with you. We constantly look at other diseases such as Duchenne's and SMA types I and II and feel so blessed not to have them. Terry is glad he had a chance to hike, bike, etc. when younger. Some never get that chance. I look at that and I'm always removed from my self-pity party. But sometimes, I look selfishly at what we were going to accomplish in life, and that's all changed. It does affect me and I have to admit that! We usually stay on the positive side.

teda -- (Sue) Ted was 38 when first symptoms and now he is 50 and I'm 47

bobcandy -- One of the problems is that we didn't know that KD was coming.How many of you knew that you had a chance to get KD?

teda -- (Sue) what do you do for fun?

lenj -- [Jeanne] Len says that he feels fortunate to have been able to go hunting and play sports as a young person when the children with MD can't

susannew -- We have strong hope that SBMA will be curable or treatable! The FSMA conference did update us on recent research. They now have mouse models and are going to test 1200-1400 FDA approved compounds during the next year to see if any have any affect on KD. If any do show an affect, we may be able to skip animal testing and go straight to clinical trials. We'll keep you posted as we hear more.

kdfl -- I didn't have any idea it was coming.

paulag -- One thing that bothers me is that our 20 year-old son still lives with us and shows no signs of leaving. I thought it was just because he's got it made here - no real bills, but he told me one day that he feels that he should be here to help us. I never wanted to have our child feel that HE needed to help US.

susannew -- We had no previous knowledge of KD in Terry's family. I think that was harder. It wasn't what I signed on for, but I think God has a definite plan. The KDA is what came out of it. When life gives you lemons, make lemonade!

butch -- This is Butch--I still can't get used to my wife Mary Lou having to do some of the tasks that I used to do exclusively. Thanks to the wives and other care givers who are there for us. Thanks

teda -- I didn't know either. That is the reason that I have been letting family members know of their possible future

susannew -- Terry and I together for fun go to the movies, drives to the beach, video games, shop! Alone, I like to garden, oil paint, write, read, play piano when I have time. Terry likes to build models.

susannew -- paulag: WOW! What a son. What did you tell him?

paulag -- I told him how much I love him and appreciate him. What else can you say?

butch -- Thanks again one and all. Ron and Mary Lou are signing off until the next chat. Also you all want a FAMOUS person to champion KD. Well we have him--Terry Waite. Thanks Terry and Susanne.

bobcandy -- Thanks from us too!

paulag -- and from the Goynes family!

susannew -- I've found that for myself, I have had to stop myself from saying "no" to activities because Terry can't do them. I used to feel guilty. But, that's when I really began to feel trapped and depressed. So we've talked about it in great length. I now play co-ed softball (a game I have played and loved since childhood) once a week. Terry comes out and routes us on. We weren’t sure how he would feel about it sitting on the sidelines, but we tried it and its been great. He's met others to talk with on the stands each week (We also go for dinner/drinks after games, another social activity for us). I also have now gone for hikes with my Dad (something we've always done until Terry could no longer.) Its been good for me to go even though, its without Terry. But he goes and does something with another friend or family member then.

teda -- and from the Abbott's

susannew -- We have 15 more minutes before we're shut down!

susannew -- Thanks for all of you joining us today. We should try to do this chat topic at least once a quarter. What do you think?

chuck -- We do worry and fret about our two granddaughters which are 17 & 18 and going through their child bearing years. That is one of the reasons our daughter and son-in-law are going to NIH and genetic counseling withn us. That family of four lives about 1 hour from us but the four of them just dote on Charlie and give him so much love and attention. They too

treat me great and seem to realize I have a plate full in life. Butch you are correct in saying we have two absolutely GREAT CHAMPIONS when we have Terry and Susanne leading our way and may God Bless them abundantly as well as giving each of us extra strength and courage in our caregiving.

paulag -- That's good. This has been great for me. I'm really happy about the idea of a support group for us "supporters".

teda -- I think that is a great idea

lenj -- Jeanne says she would like it once a quarter. Also goodbye and thank you from the two of us

lenj -- {goodbye lenj}

paulag -- {goodbye paulag}

susannew -- Anna Lea: Has your daughter been tested? Is she a carrier?

kdfl -- Anyone who wants a one on one chat on the KD Chat room, email me a time and I'll try to be there.

susannew -- That's a great idea John. That's what its there for!

chuck -- This too will be discussed in depth. As of now, no she has not been tested. You know this is a big decision and involves a lot of different areas in life. Will keep you posted.

susannew -- Anna Lea: Oh shoot! What am I thinking. She is an automatic carrier since her father is the one who has the disese. Her children have a 50% chance each of having inherited the gene.

bobcandy -- We have to go. Thanks to everyone.

susannew -- Sons do not inherit the gene from their father, but daughter's automatically get their father's X with the gene on the chromosome.

bobcandy -- {goodbye bobcandy}

susannew -- Good bye Bob and Candy!

chuck -- Correct Susanne but it is our understanding it isn't definite she

HAS to be a carrier is it????

susannew -- Women with the gene (Carriers) can give the X with the SBMA

gene to either children. Girl or boy. But the mother also has a good X

that either child could inherit instead. So a 50/50 chance.

susannew -- Yes, Anna Lea. From my understanding. A female from a father who has SBMA is automatically a carrier. She gets his bad X and your good X.

kdfl -- Good bye all. We both enjoyed the chat.

susannew -- Confirm that with the doctors and email me please. But that is what we have been told a few times by different doctors including a genetic counselor we went to see.

kdfl -- {goodbye kdfl}

susannew -- Goodbye all.

chuck -- We strongly feel that it is that family's decision how they want to handle and we to to try to give them all of the education that we possibly get our hands on and a Dr. from JH offered us this counseling appt. with Dr. Fischbeck.

susannew -- I thnk its great you'll be going to meet Dr. Fischbeck. He's great!

chuck -- {goodbye chuck}

susannew -- Well, we're about to get kicked off. Goodbye all!

teda -- Bye all

teda -- {goodbye teda}

susannew -- {goodbye susannew}


End Chat