Kennedy's Disease Association

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Kennedy's Disease Chat Transcript

1-27-01

Topics: Spouses & Significant others dealing with SBMA


Chat Participants:

  • susannew
  • gryphon
  • jean
  • jean-s
  • judy48312
  • llb
  • chuck

 

chuck -- {welcome chuck}

susannew -- {welcome susannew}

susannew -- Good morning Chuck! Where are you from?

chuck -- Susanne, this is Charlie Rannells.Sorry I didn't get to you with password. We had an accident.Will get back with you.

gryphon -- {welcome gryphon}

llb -- {welcome llb}

susannew -- Good morning Charlie and Anna Lea, Patrick and Lori.

judy48312 -- {welcome judy48312}

gryphon -- Hello, my name is Patrick Griffin.You can call me Patrick, or you can call me Pat, whichever you prefer.

llb -- Hello everybody

susannew -- Good morning Judy, where are you from?

judy48312 -- Hi Sue. I'm in FL, Don's wife.

susannew -- Welcome Sue!

llb -- What is today's topic?

susannew -- Today's topic is Spouses and Significant Others and their concerns about SBMA

jean -- {welcome jean}

susannew -- However, all are welcome, spouses, friends, significant others and individuals with SBMA

susannew -- Good morning Jean.

susannew -- We will officially begin the discussion on the topic at 7:30 am, pst, giving time for others to join us.

susannew -- Sue, Have you sat with Don at previous chats?

susannew -- I'm glad Charlie and Anna Lea are here. This is their first time to "chat"!

gryphon -- I'm a man and I have KD. Since this session is focused on spouses/significant others, I'll give some details of mine. Feel free to chime in with your details or ask questions. I'm presently unmarried. I have one brother who seems to be unaffected. I have three sisters, none of whom have been tested, so we don't know if they are carriers. Each of my sisters are married and have several kids, although none are old enough to have developed symptoms that we know of, and none have been tested. My oldest nephews and nieces, some of whom have recently married, have expressed the most interest in KD. I answer their questions whenever they ask.

susannew -- For those who may not know, or read this transcript in the future, my husband, Terry has KD.

llb -- Same with me, my husband, Duane, has KD.

judy48312 -- My husband Don has KD. None of his 4 bros/sis have the gene, thank goodness

susannew -- Does anyone have any concerns or questions they'd like to discuss?

chuck -- My wife, Anna Lea is my care giver and my typist. I am concerned about her.

susannew -- While it is difficult on those who have KD, I do not deny they go through tremendous physical changes and emotional challenges, so do their wives, girlfriends and significant others.

susannew -- What are some of the challenges you face?

susannew -- From my perspective, one is not being able to do the things we used to be able to do... hike, roller blade, bike, etc. (And this has had a "physical change" in me!)

judy48312 -- I guess so far I'm lucky Don's not in a chair. He's still able to walk with a cane but is little by little losing strength

susannew -- Does that present challenges or changes in your lifestyle or has not affected you as a couple?

judy48312 -- I agree. we used to walk a lot. now I walk alone with the dog. Don's able to walk in the wading pool we have here but does NOT do it on a regular basis like his doc suggested. Frustrating

llb -- Having to keep up a strong front for everybody and the kids, etc. Always trying to be optimistic and watching the progression of the disease.

susannew -- Lori, you've hit the nail on the head also. We don't have children, but keeping up the strong front for Terry (and his mother) as well as watching him progress. His legs have become so thin. He used to be muscular and very physically fit. It tears my heart out when I really think about him and what KD is doing. I try to remain optimistic as well,

but there are times I cannot.

gryphon -- My second cousin Richard, 20 years older than I, was diagnosed about the same time as I. He gives me a glimpse into the future with some of these issues.

susannew -- What are they Patrick?

gryphon -- Richard is a father, was diagnosed first with ALS, then MS, finally KD. With his wife's help, he was able to live at home after he retired. Later, when his wife was essential to his daily chores, and she wanted to visit their kids and grandkids, he used adult day care.

judy48312 -- Don's original diagnosis was also ALS. Thank God it turned out to be KD. Like his doc told him, he'll die WITH KD, not from it. So I guess that's good?

gryphon -- Since Richard is 20 years older than I and we have progressed at the same rate, he is 20 years more advanced in symptoms. As he progressed, he transitioned from living at home most of the time, to an assisted care facility. He would go home at times, or go visit his kids and grandkids with his wife.

llb -- It is very frustrating having to deal with doctors, at least in our area that seem to know nothing about this particular disease and when certain issues come up, such as problems with CPK and Creatine levels that nobody seems to know what to do about this and here we sit waiting for kidney failure or whatever and not knowing why. All they can say is that this is not part of this disease, so what is it then?

judy48312 -- Are you seeing a neurologist?

llb -- Yes, we have two that we see locally and one at the Mayo Clinic and none of them seem to know what is going on and can give us no answers as to why this is happening and what to expect. Very frustrated, they just keep telling us to wait and keep taking blood tests as the values keep going up.

judy48312 -- Maybe we're lucky as far as docs go. Both Don's neurologists in Mich & now in FL are familiar with KD and are pretty much up on things (if that's possible) so that's good.

chuck -- I feel that KD patients should see a MDA clinic if there is one available. I go to John Hopkins Hosp. in Baltimore, MD

judy48312 -- I agree re MDA clinic. That's how we found the new neurologist here in FL. She's great.

susannew -- Something we are seriously considering putting on the KDA site is a list of Doctors (with their permission) familiar with KD. If you would ask your doctors that you think are good and are familiar with KD if they would be willing to have their names, addresses and phones posted to the site, please do so and get back to me. This will help others find doctors that are "relatively" close to them. Even if they are a 4 hour drive away, it may be worth it for some to visit with them.

judy48312 -- We'll be seeing Don's doc next week. we'll see if she'd mind being added to the list

chuck -- Susanne, maybe if you would contact MDA they would give you a list of doctors.

susannew -- Chuck: Agreed that the MDA clinics could also be on the list. I have heard of various individuals going to physicians and neurologists other than the MDA clinics. Some due to the fact that they are not near an MDA clinic...

susannew -- I get frustrated with Terry because he won't "try" anything to see if it might help him. I ask him to try the many supplements (one at a time) that individuals have tried and said have helped them. Some being  Glucosamine, CQ-10, even trying testosterone shots... he wouldn't. We finally had a serious talk, because I feel its worth a shot and if the

supplements won't hurt him, why not at least try. He's now trying the Glucosamine. He had taken one a while ago and it helped him for one day have no pain. He tried the next day and it didn't work so he gave up. Now he's going to give it at least a 2 month try.

gryphon -- I take Glucosamine. Recent research has shown that it does help repair cartilage. My ortho doc endorses it. Since KD weakens muscles, and muscles help support our joints, KD causes much more strain on joints, and can induce arthritis. Glucosamine can help avert or repair the damage.  However, it must be taken regularly and for a period of time to work. It is not like aspirin: take one and the pain goes away. Glucosamine reduces pain by helping your body repair damaged cartilage, which takes time.

judy48312 -- Where are you ILB?

llb -- South Dakota. Land of the blizzards.

jean-s -- {welcome jean-s}

jean-s -- Hello everybody, it's Jean from France, my wife is with me I am her interpreter

chuck -- This is Anna Lea talking for herself. Yes, we all wonder what is coming down the road but I certainly try to stay optimistic but at the same time we do worry - sometimes more than others. Chuck's brother who is 80 also has KD and is much worse than Chuck so that is hard on the two of us. The accident I spoke of earlier was that Chuck walks on his own some,  however, he feel in the garage last week on Monday. He fell flat on his

face. Charlie is 73. He was hospitalized for two days. I didn't even recognize him from his face but he had very little pain. He is coming along good but that hurts and makes you also think more of what may be coming down the road for the two of us..

susannew -- Anna Lea: Falling is definitely a hazard with KD. Many who continue to walk, even with a cane or braces, have had falls. I'm sorry to hear about Charlie and am glad he is recovering quickly.

gryphon -- Falling: KD weakens muscles, and it does so by killing nerve cells. It also damages nerve cells that provide propioceptive feedback.  That is a fancy term for the way our nerves tell our brains where our body  is in relationship to the ground. KD patients begin to lose that ability to "feel" where they are, and this causes the tendency to lose balance and then to fall.

llb -- Judy, does your husband have any issues with his CPK and Creatine levels or any kidney problems that have arisen? My husband has only been diagnosed for seven months and this has been happening almost since the beginning and still no answers. They have taken him off of Creatine but does not seem to make a difference. They have flushed him with IVs and it takes it down a little but then starts rising right away. Kids are frustrated as they are young and do not understand everything that is going on.

susannew -- Lori: Raised CPK levels are normal and a sign for KD.

judy48312 -- Yes, Don's CPK readings were high. His MI doctor was concerned and at the time he was on Creatine. The doc told him to stop the  Creatine but from Don's finding out on the chats is that all KD patients have high CPK levels. So I think it's just part of the disease

susannew -- Lori: I don't know what Creatine is?

judy48312 -- It was a supplement found in health food stores. Many athletes use it to give them strength. Don felt better when using it. Too bad he had to stop

llb -- It is a measurement of the waste material that is going through the kidneys and that can block the flow causing kidney failure. Doctors are more concerned with this reading than they are with the CPK. Usually with a reading of 3.7 to 4.0, many patients are on dialysis or kidney transplant lists, normal is 0.7 to 1.3, Duane's currently has been 2.3.

susannew -- Lori: Terry's broken out his records and his Creatine is "within range" for normal at 0.6-0.8. Normal levels are 0.5-1.4 according to his medical record. I don't know if this will help you compare Duane's?

chuck -- My throat is a very weak spot and I have trouble swallowing and eating. I lost a lot of blood from the fall from my nose and a bad draining of blood to my throat. They suctioned it out for me which was a help. Anna Lea had to stay with me since no one could understand my speech during this.

llb -- Duane has also had a lot of trouble with swallowing or getting phlegm out of his throat. So far no suctioning, but quite a bit of choking and gagging, but so far we have managed. Have gotten a food processor to eventually grind food up when necessary. His tongue shows some wasting at the back, guess this is normal.

susannew -- Terry hasn't had any problems yet with phlegm or swallowing in general other than dry foods like bread. He does have the laryngeal spasms about once every 3 months.

judy48312 -- Don shared some exercises he received from his swallowing test. I believe Sue has them somewhere on this site. They seem to help him some as he has some weakness in his throat, too. Also, after meals this same doc suggested he eat a spoon or 2 of lemon ice. Seems to help with the phlegm.

susannew -- The exercises Judy mentions that Don does are on Kennedy's Disease Association's web site: http://www.geocities.com/terry_waite_2000/  under the "General Tips" section under "Exercise" then scroll down for "Throat exercises".

chuck -- I had a throat dilatation last Feb. which helped me greatly with eating and swallowing.

chuck -- I went through a protocol a few years ago and since that time Anna Lea gives me a weekly shot of testosterone which in my mind helps me.

I wouldn't suggest this to anyone without permission of their Dr. The dosage is calculated by your weight I believe.

judy48312 -- Don's been on testosterone for several years. On occasion, they've reduced the amount as his PSA count gets too high.

susannew -- The testosterone does help both Charlie and Don?

chuck -- They have watched me closely on the PSA and mine has never been elevated thus far.

judy48312 -- Sue: I'm having trouble reading these notes a the page seems to jump around a lot. Any idea why?

susannew -- Judy: Are you trying to scroll down? When I do this it jumps every time someone enters a message.

judy48312 -- Is that because it refreshes every 10 seconds? Maybe 10 seconds is too quick?

susannew -- Judy: We don't control the refresh time. The MDA does. You can hit your "pause" link right above the message box and then resume.

judy48312 -- thks

susannew -- Does everyone need a quick break to be able to read and catch up?

llb -- I will just print it out after the chat.

judy48312 -- Is anywhere here experiencing mood swings with their patients?

llb -- Yes. Duane has been started on Zoloft, an antidepressant which seems to help a little but I am thinking maybe he needs to increase this.  This disease is very frustrating for him as he can not do what he was used to and has to be inside and around the house which is depressing for him. I try to understand.

chuck -- Yes, I have also been put on Zoloft just recently. Anna Lea thinks it has helped me also.

susannew -- No mood swings here, but definitely short and "snappy" sometimes. I call Terry "Snappy Tom" when he's doing it. This is especially pronounced when he is hungry. (hypo-glycemic perhaps)

judy48312 -- Well, glad I'm not alone with these moody folks. I hate to see Don go on another pill but I may ask the doc re it

susannew -- Terry has become a bit depressed lately because he is dealing with the adjustment to being home full-time. He is missing the social interaction of being at work and hanging our with the "guys".

judy48312 -- I don't think Don would admit it but now that he's not able to do some of the things he could before, I think he gets in these moods.

gryphon -- I take Zoloft also. Because of three back surgeries unrelated to KD, I have chronic acute back pain. Chronic pain depletes the brain chemicals that help maintain mental health. Zoloft helps the brain maintain the proper levels of the chemicals in the brain.

chuck -- My (Anna Lea) personal opinion is things go better if they can stay active and maintain their interest with their friends. etc. It is hard on them as patients since they cannot do what they did and want to do and it makes it harder on them to watch their spouses have to carry more of the load all the time. I think we can all understand that somewhat if

we try to put ourselves in their shoes....

judy48312 -- I hear ya and I think I am quite understanding on what's going on. but I guess I feel if you're having a bad day, you don't need to take it out on me.

susannew -- I agree with you Anna Lea. I've talked with Terry about him joining some social clubs, hobby clubs, YMCA pool, maybe even taking a college course here and there to keep him out and about and meeting people!

susannew -- I am very empathetic to Terry's situation. However, there are times when its tough to ignore his snappiness.

llb -- I agree with Susanne and Judy, sometimes it is hard to ignore and I just try to smooth things over with the kids so that their feelings are not hurt as they do not understand the reason behind the moodiness.

susannew -- Sometimes one also needs to be able to talk to someone not so closely tied to KD and the emotions.

chuck -- You know I have to admit - I get a little snappy at times myself and I have really nothing to blame this on. (LOL) Anna Lea said this...

susannew -- I've finally let go of my "guilty" feelings of doing something without Terry. We used to do EVERYTHING together. I wouldn't go out roller baldeing, jogging, shopping, etc. without him due to that guilty feeling. I started to get depressed feeling like I was "trapped". Now I play softball on a league every Sunday and feel much better. We were

concerned that Terry would be upset if he came to watch and couldn't play.  But its worked out well. He gets involved keeping score and chats with the team members.

gryphon -- Re: exercises - my cousin has been given a few exercises, and over the years has developed some of his own. I have not been given any specific ones to do. I encourage everyone to email the KDA with the exercises they do so we can share them and find out what works.

gryphon -- Other things besides pain depletes these chemicals. Exercise can help restore these, and when I was younger, I used to run five miles a day, and never had any mood problems. With KD, I cannot exercise, and so my doctor recommended Zoloft. For us, it is no different than taking insulin for diabetes. It is a physical issue, with a medical solution, and there is nothing to be ashamed about.

gryphon -- I agree that exercise and interaction is good. If that is all that is needed, fine. But sometimes, one's situation demands a little help from medicine.

judy48312 -- that's why I'm trying to get don back into the wading pool. he actually felt much better & stronger plus saw less swelling in his feet/ankles when he walked.

susannew -- Judy: Terry feels he can exercise in a pool because it puts less resistance and stress on the body. I hope Don resumes his exercise!

gryphon -- While I endorse medicine (e.g. Zoloft) as necessary, cognitive psychology cannot be ignored by we KDers. That is, we are in charge of our emotions, not the other way around. Being cheerful and considerate of others is a discipline, albeit difficult during "down days". We may not be totally in control of our situation or our feelings, but ARE responsible for our actions, and have the ability to choose what we do.

judy48312 -- I agree gryphon re treating folks with respect, etc.

however..... we love to play cards. Now that Don's having trouble holding a dozen cards (pinochle/bridge) we aren't playing together much. thank goodness where we live in FL you are accepted as a "single" person into almost all groups and Don has no problem with me playing cards with these groups. it helps to get away from each at times, too

gryphon -- Re: cards. Their are aids which are card holders. I think they were developed for folks with arthritis, but would be great for us. There are web sites and stores with a lot of assistive devices out there.

judy48312 -- actually we do have a card holder for Don to use. And it works out well. but sometimes he gets tired after playing just a few hands of a game and when you go to the organized card groups, you need to be able to play a specific number of hands; since he can't guarantee that he opts not to play. we do on occasion have folks over the house where we can play just a few hands if we want.

judy48312 -- plus this area will work out great when the time he's in a chair as it's all level and pretty much handicap accessible. I hope he returns to wading real soon, too. Thanks Sue

gryphon -- Workload at KDA - I (Patrick) help out, but Susanne and Terry maintain the KDA Web site and do most of the work. They are swamped and need help. I am going to be maintaining the research pages, so email me at This email address is being protected from spambots. You need JavaScript enabled to view it. with any research info you find.

susannew -- KDA email is: This email address is being protected from spambots. You need JavaScript enabled to view it.

judy48312 -- is anyone here from Spain?

llb -- Judy, are you and your husband attending the SBMA meeting in Chicago in June?

judy48312 -- re Chicago: We were planning to but now that Don's checked out the cost of the motel, etc., I don't think so. I think it's a bit much to have to pay $225 or so for a motel room. Seems like they could fine a much less expensive site to hold the convention

susannew -- We were able to get our room at the FSMA conference for $150.00.

judy48312 -- you're staying at the motel where the convention is?

llb -- We were able to also for 150.00 and an organization in our community had a soup dinner for Duane to help defray the cost of this meeting. This community has been great.

susannew -- We are staying at the Fairmont where the FSMA conference is being held. Todd Allen posted on the message board that he had room for someone if they'd like to stay at his place. He has KD and lives in Chicago.

gryphon -- One of the most incredible experiences I've had was attendance of the SMA conference. To meet kids and adults who have never walked, yet are positive, cheerful, and happy was simply humbling.

jean -- {welcome jean}

susannew -- I agree Patrick. I felt the FSMA conference was a huge help for me. It truly made me accept what was going on with Terry and I had an overwhelming sense of belonging and support through meeting others.

judy48312 -- we've been to several conferences. it's sad to see those little kids in their chairs but they fly around like everything is normal with them. it's great to see

susannew -- We never forget that there are others out there who have it much worse than us. When I describe KD, I tell people its not "life-threatening" but "Life-Style" threatening. Life-styles can be adjusted!

llb -- We are really looking forward to the conference as it will be our first and hopefully some understanding and knowledge will come out of this experience.

susannew -- Judy: I could not have described it better than you. The kids have a great time zipping around everywhere.

susannew -- Meeting other adults with SBMA was great, but also other adults with SMA III. We learned alot from the conference workshops and talking with others at breaks and lunch. We've made some very great friends.

gryphon -- Assistive devices: I use a "grabber". It is an aluminum and plastic device that is about 2 feet long. It lets me to lean over and grab things that are too far away to reach (remote control :-) and I'm too 'lazy' to stand up, walk a few feet, pick up, and return to my chair.    Also, it helps me to pick up something that is on the ground, as bending

over really wracks my back.

susannew -- I think I'm Terry's assistive device! : ) LOL

judy48312 -- I've seen those. may have to get don one of these days.

susannew -- I take anything that needs to go, up the stairs. I carry heavy loads around the yard, mow, paint, drill, etc.

judy48312 -- that's why we haven't bought one yet. when it comes to getting the newspaper in the drive, etc., I do it

susannew -- Perhaps though, its time for me to evaluate how an assistive device here and there could help alleviate some of the "burden" I'm carrying... Free some of me up...

gryphon -- Re: card playing and moodiness. My cousin, Richard, is now in a full-care facility, yet maintains a positive mood. Last time I talked to him, I asked him how he does it. He replied, "I learned long ago that you have to play the cards you're dealt with."

judy48312 -- sounds like Richard has a good attitude

gryphon -- The point of my last statement is that we KDers need to cultivate our spirit of self discipline, which helps us maintain our self respect which helps us keep a positive attitude.

susannew -- I agree Patrick. I have to say that Terry has done a great job with that. Only recently with the shift from full-time work to full-time home has it been a bit difficult. I'm sure with time this adjustment will be made also. He's generally in good spirits which helps keep me in good spirits!

judy48312 -- it will take some time to adjust to being home full time (by both parties) but it will happen. I know when I retired and don started working out of the house, then retired, it took a while. but we survived it

llb -- I guess I am lucky that way, Duane is not to that point yet. He is still able to help some around the house and go on errands, etc. Hopefully this will go on for some time.

susannew -- Terry does help me here and there and tries... I'm careful to evaluate how much though. He tends to over-do-it frequently and pays for it for the next few days.

jean -- Jean's Wife. To permit my husband to have more rest and be lesser exited I reduce my work time, also I have more time for myself

gryphon -- I am in awe of the spouses of KDers, and respect their commitment. However, I feel that we must help them help us. To become dependent on being helped to accomplish certain tasks before it's really necessary often becomes a self-defeating spiral downward. IMHO.

chuck -- I still help Anna Lea with the chores she has assigned me pertaining to her cleaning of the house. She won't let me give those up....LOL

judy48312 -- good for Anna!

jean -- Jean's wife. It will be a long process to find out the just repartition between husband and free time

judy48312 -- keep that honey-do list going!

susannew -- This is an adjustment period for me too! I have to go to work, while he sleeps in and gets to stay home!!! We've both carried the weight at home and work 50-50 for the last 13 years and now its a bit unequally yoked. I'm a bit jealous of all the time he has. I know its not fun and games, but when I hear he went to the movies with my brother or something else while I was at work, its hard for me not to be a tad jealous!

llb -- Yes, it is hard to have to work while they sleep or rest but I guess that is what the doctor told them to do and I am grateful I can still work and try to enjoy the kids. Duane is finding a lot more time to be with the kids and going to their school functions that he could not do before because of work so that is a plus I guess.

susannew -- Lori: Its great Duane can be more involved in the children's school and activities.

judy48312 -- yep, you have to put things into perspective at times and then they won't look so bad. like you said, llb, now Duane can spend more time with the kids. that's great!

gryphon -- Chuck, you're welcome to visit me anytime you're free!!!! :-)

jean-s -- shift from full-time work to full-time home is difficult to envisage without fright. I will prefer to reduce work before stop it

susannew -- What is IMHO?

gryphon -- IMHO - In My Humble Opinion

jean -- Jean's wife if the husband stay at home it is normal he do his job like cleaning, cooking ... if he can

susannew -- Jean: I'm going to print out your comment about its normal for him to cook and clean if he can as a reminder for Terry!!! Just kidding,  he does help out.

susannew -- Terry still does the laundry for us. I just bring it down and up the stairs! We share vacuuming, dusting, and taking out the trash!!! I do all our finances, maybe its not a fair trade.

gryphon -- Jealousy of KDers - although I'm not married, my best friend Dave sometimes makes comments. The amazing thing (to me) is that his company was bought out a couple of years ago and he was downsized and lost his job. Thus he hasn't been working and spends his time putzing around the house while his wife works. I am jealous of him. I want to tell him,  that if I could, I'd be working...

chuck -- You see, we are old and both retired and have no kids at home to consider. I feel we have it easier than you young ones. Maybe we have found ONE advantage to being old. LOL Anna Lea worked for 13 years after I retired because she loved her job and can't be still. Guess that is her makeup.

susannew -- I love to work also. I enjoy the challenges and the thrill of overcoming them at work. However, I've felt less and less free time for myself.

susannew -- May I ask of each of you... how long ago was your husband or were you diagnosed with KD? Terry was 4 years ago.

llb -- Duane was 7 months ago.

chuck -- I was diagnosed in Oct. 1991.

judy48312 -- Sue: what are plans for future caregiver chats. I wouldn't personally want to do one every 2 weeks but maybe every several months? Don was diagnosed in 1990.

jean -- 7 years

susannew -- When would you like to see another Spouses and Significant Others chat? Maybe once every 6 months? You can always join in a chat at any time...

susannew -- The chat will close in ten minutes!

judy48312 -- that sounds good to me. how about everybody else?

llb -- That's fine with me.

susannew -- You all seem to be doing a great job adjusting to KD!

gryphon -- Guy psychology 101: some of us have been socialized to equate our self worth with what we DO, not who we are. When our ability to DO is reduced, our self image suffers. However, KD does not eliminate our ability to DO, it just changes WHAT we can do. We must take responsibility to learn new abilities, and then DO them. That helps us maintain our self image. Sometimes we also need to learn new WAYS of doing, too. For

example, I've found that using a bar stool helps me do dishes, as standing over a sink was getting almost impossible.

chuck -- Fine here. Thanks for a job well done Susanne...

llb -- There are good days and there are bad days, you just take one day at a time.

jean-s -- Susanne : my wife and I have difficulties to follow the chat enough quickly. We read all later with time. My wife has the same problems

than you Susanne or other KD wives : lot of work to do that I cannot do myself. But the most important cause of pain for her (and me too) is consequences of KD for our daughter.

jean -- Susanne You have quickly to find a solution, before you anger will grow up and the "bomb" will explode

judy48312 -- practice makes better! it's been nice talking to y'all and glad to see we're experiencing the same things

susannew -- I don't feel anger truly. Just sometimes it bothers me. For the most part I keep a good outlook and understand the situation. I was fine with the KD until our latest challenge, Terry home full-time. Its only been 1 1/2 months and I'm still adjusting. I'll figure it out over time! Thanks for your concern.

judy48312 -- You take care. Hope to see you at the next caregiver chat.

gryphon -- I sense that their are a lot of emotional issues out there. I have an undergraduate degree in psychology and a masters in health care. I volunteer to write a page for the KDA site on emotional problems,  psychology, and self-help. I welcome you experiences and suggestions.

llb -- Nice talking to everyone, hope to talk to you next time.

judy48312 -- Sue: Is the next KD chat in 2 weeks for the regular group?

susannew -- JeanS: You may want to review last weeks chat if you haven't already. It was all about Carriers concerns and children inheriting KD was one of them.

susannew -- Thank you everyone for coming. We'll "Chat" with you in two weeks! Take care!

judy48312 -- Bye all.

judy48312 -- {goodbye judy48312}

chuck -- Enjoyed and everyone take care.

jean -- Auf Wiedersehen

llb -- See ya!

gryphon -- Re: child bearing and research - let me know of issues and findings on fertility, sex selection, etc. related to potential parents with KD in their lives.


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