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Kennedy's Disease Chat Transcript  05-17-2003

Topic:  Wives & Significant Others

Host: Judy Schings


Chat Participants:



butch -- {welcome butch}
johni -- {welcome johni}
judy48312 -- {welcome judy48312}
chuck -- {welcome chuck}

butch -- Good morning to all. So far I am the only one here.I would like
to thank all you significant others for all your help with us KD guys. I
know we don't say thank you often enough. Sooo--a big thanks for all you
do for us each and every day. THANKS!
johni -- {welcome johni}
judy48312 -- {welcome judy48312}
butch -- Just to let you all know--the session begins at 10:15 edt and
ends at 11:45 edt. So we squeek in another half hour.
butch -- welcome johni and judy.
johni -- Hi, from a wet and windy England. This is Jan, Johns wife, using
his password
johni -- Hi Judy Hi Bruce
johni -- Butch sorry!
butch -- Johni--how are you? Our weather in Penna. is just about like your
England weather. Hope your health is OK.
judy48312 -- Butch: Do you have a significant other who will join us for
today's chat?
chuck -- {welcome chuck}
johni -- John is watching the Football Cup Final
judy48312 -- Hi, Chuck.
judy48312 -- Chuck: Is it you? or your significant other?
butch -- Mary Lou is my wife--Normally she doesn't do chats. if you have
any pertinent questions for her--I'll be glad to relay Q&A.
judy48312 -- Don't really have any questions but the subject for today is
wives' concerns. Does she have anything she'd like to share. (I don't
usually do chats either but agreed to host this won for Susanne since
she's out of town)
butch -- Judy--It is 47 deg in Lancaster, PA. Send some warmth and
sunshine our way.
chuck -- Anna Lea (my wife of 51+ years) is on a tight schedule today but
she is here if we need her. ok?
judy48312 -- Jan: I guess you & I are the only females on line. Any
concerns you'd like to express??
butch -- Hi Anna Lea, How are you and Chas doing?
judy48312 -- Anna Lea & Mary Lou: Any concerns???
johni -- I have come to the chat on Johns password because I was really
glad that we 'supporters ' could have an opportunity to share concerns etc
judy48312 -- Are all the men here in scooters? Or are you mobile?
judy48312 -- Sharing concerns is the gist of the chat. Please share
anything you'd like.
judy48312 -- We purchased a scooter for Don 1-1/2 years ago. It's not that
he likes using it but it sure gives us a lot more freedom as far as
getting out & about & doing things.
chuck -- Guess I have the normal concerns and they just don't go away.
Charlie walks with cane in house but whenever we go out he is either on a
scooter or wheelchair. I really don't know how to express concerns other
than we do worry about what is down the road for all of us, however, we
pray and live one day at a time.
judy48312 -- We even went on a cruise last month using the scooter.
johni -- It is so hard being with someone and watching what KD does to
judy48312 -- Don walks with a cane inside, too. I agree with your comment
re "not knowing what's in store down the road" as everybody is so
different with this disease
chuck -- But you know, I try not dwell on this because we as healthy
people don't know what is down the road for us either.
johni -- John is not able to walk very much at all. He uses a wheelchair
nearly all of the time
judy48312 -- unfortunately, KD is progressive. Don stayed pretty much at
one plateau for a long time, then about 2 years went down to the next
plateau. There are 2 other KD patients right in our community, all showing
different signs of the disease.
butch -- Judy--This is Butch (Ron) So far I am still walking, but using a
cane most of the time. Eventually I'll end up with a scooter. I don't want
to get one till I can't make it walking.
judy48312 -- One of our friends here is in a wheelchair pretty much 100%.
The other isn't to that point yet.
johni -- We have no one we know who suffers from KD. I don,t know if this
is a bind or a blessing.
butch -- Anna Lea--Tell the ladies about the belt lift. It really works.
judy48312 -- I hear you re not wanting to get a scooter until you must.
That's what we did here, too, but it sure does give us a LOT more freedom.
We are doing so many things now that we could not before
chuck -- Johni, where do you live - and Judy also? I probably should know
if you were at the conference in Baltimore but can't seem to get it put
together. I feel you are fortunate Judy to have someone near you sharing
our daily/weekly/monthly concerns.
judy48312 -- Are any of you coming to the KD convention in November?? We
went last year. It was a nice way to meet folks with the same
judy48312 -- I'm near Tampa, FL.
johni -- We are in England.
butch -- Judy--Yes Mary Lou and I wikk be going. I'm not sure about my
daughters, Anita and Annette, if they will be going or not.
johni -- We have got no chance of getting to a KD Convention. Financially
it is impossible, but just travelling in this country is difficult.
butch -- wikk should be "will"
chuck -- Yes, ladies. Ron always said I was going to change Charlie's
voice - LOL - but the Drs. has agreed it is the best way to get him up. I
only used to use it to get him up when he fell, however, I use it almost
daily now. Charlie has lost so much strength in his legs that he has
trouble getting up from chairs. I just get a good hold of his belt and
pants in the back and I have more strength lifting that way and once I get
him started to almost a standing position he is ok. I do have to be
careful that he is standing steady before I release him.
judy48312 -- I know I met a bunch of folks last year at the convention.
Unfortunately, do not remember too many names.
judy48312 -- Yes, we've used the belt "trick" too. It definitely helps,
let's you get a good grip on him without pulling on his body.
judy48312 -- We have had handicapped toilets installed. They're only 2-3"
higher than regular ones (so I can use it without my feet dangling) but it
helps Don get up a little easier.
chuck -- Ron, Pete tore Charlie's belt loop off the other Sun. in Sunday
judy48312 -- Too bad (??)you can't find anyone else in England with KD.
Nice to have a nearby support system
chuck -- We have one handicapped toilet but my feel dangle so I just use
the other bathroom.
johni -- We have a great aid for lifting John. It starts off as a flat
cushion that I roll john onto, then it inflates to chair height, where I
can lift him onto his wheelchair
judy48312 -- Really? Never heard of anything like that. What's it called?
johni -- KD is not the same for each sufferer. This makes it hard to
chuck -- We read about that but would like to know more about it. If you
would e-mail me later with any info - I would appreciate. Here is my
e-maill address:
This email address is being protected from spambots. You need JavaScript enabled to view it.
johni -- Mangar International Lifting Cushion. They do a whole host of
products for lifting, including a toilet seat!
judy48312 -- That's true. But based on the 3 guys here, it's like sooner
or later they are getting to the same place with the disease
butch -- I can't tell you ladies how much we guys hate that you all have
to do so much for us. Even the things we used to do all the time, we now
seek help to get it done. Sometimes it is easier for you to do it for us.
But most times we would rather have help to do it rather, than you having
to do it for us. We don't want to appear totally helpless.
judy48312 -- We understand that. It's tough to give up the "freedom" of
doing what you want, when you want, etc. Unfortunately, that's all part of
it. And I don't think any of us mind.
judy48312 -- Jan: Is that cushion place in England?
johni -- I know John doesn't like me having to do so much, but it has to
be done and I am happy to do what I can.
butch -- Anna Lea--If Pete tore Charlie's pants in church, I guess that
made them holy pants.
johni -- Yes Judy. But they are an International Company, and are on the
judy48312 -- Okay. Will have to look them up.
chuck -- I try very hard to let Charlie give things a try unless I feel he
may fall. I don't need anymore falls. I have lived through 2 pretty bad
episodes and I certainly try to avoid them. You are right Judy, we think
we know how it is to give up freedom but then I don't think we really do.
What is the saying - you must walk in someone's shoes to get the full
effect. Ron, I will give Pete your joke & how is Mary Lou?
judy48312 -- We've tried various cushions. One is a "lift" cushion. You
place it on a chair. When you go to get up, it's supposed to assist you
with a little "push". Don didn't care for it. Then we have an inflatable
cushion he uses on his scooter seat IF we are going somewhere that he'll
be sitting in the scooter for a long time.
butch -- Mary Lou is doing well since her hospital visit. She is a
trooper. Wants to do too much. Can't hold her down.
johni -- You are right. It is so difficult to live through the falls and
all the other problems that are happening to your partner. It is so much
worse for them. Johns frustration at times is intense, very
understandable, yet I feel so inadequate because I can't help.
judy48312 -- Another concern here is choking on food. We've learned to
always have a glass of something with all meals to wash down the food as
needed. And to chew things very well. I'm beginning to puree a few items
that Don finds particularly chewy, like clam chowder.
judy48312 -- So Chuck: You were at last year's KD convention?
chuck -- You know when Charlie fractured his pelvis a year ago, he could
not get up at all. We were having thearpy at home. I asked the nurse did
she not think it was time for a chair that lifted him up. She was very
emphatic that it was not a good idea until he absoutely could not get up
by himeself at all. She suggested (and we did) that we have his chair
built up built up. Our friend installed about a 4" platform. He attached
his chair to it so there is no danger of it coming off or sliding.
judy48312 -- The platform to lift the chair would be an option, too. I
don't know if I agree with the nurse tho. I think whatever we can do to
enable the guys to better help them self should be done.
butch -- Jan--I think not having anyone near to talk with is one of Johns
problems. That is why the bi-weekly chat is a valuable tool. Tell John to
get in touch with NIH National Institute of Health for help.
johni -- Yes, John has water alongside him at all times. Eating is an
increasingly difficult time for John. Food needs to be well cooked. There
is a reducing list of foods that John can actually eat.
judy48312 -- So far we haven't reduced our food list by too much. If
anything, it seems to be the meats that are the biggest problem. Usually
by serving them with a little gravy makes them a lot easier for Don to
eat. All our veggies are well cooked, too. None of this al dente stuff!
johni -- Butch we don't have NIH in England, as far as I know
chuck -- Yes, Judy we were there. If I could see you I am certain I would
recognize you. I am terrible with names. Yes, we had a real problems with
the choking but then Dr. Ravich (he was at conference) has perfored two
throat dilations on Charlie in the last 5 years and what a blessing and
help that was. He still choaks once in a while but he doesn't have to be
eating to choak sometimes.
judy48312 -- Would emailing or IMing the other KD guys in between the
chats be an option?
judy48312 -- Same here (with names). We always sat in back of room.
butch -- Anna Lea--What to you mean that you are terrible with names. You
called me several terrible names at the conference.
chuck -- Judy, I am not certain what you are saying? We sat up front on
the right side with Ron and Mary Lou. We became friends with them going to
NIH (National Institute of Health) together.
johni -- I suppose it might. We have identified a guy who lives about 70
miles away, we are hoping to arrange to meet him. IF HE IS WILLING!
judy48312 -- ??What don't you understand? That we sat at back of room at
convention? Or re email/IM???
judy48312 -- Jan: That would be great. Maybe could find a place to have
lunch halfway between the 2 of you?
chuck -- I am sorry Judy. I understand e-mail but I don't know what
"IMing" is?
judy48312 -- The names Ron & Mary Lou sound familiar but no faces come to
judy48312 -- Instant Message. It's a "given" if you're on AOL. Can be
established if not, just a little harder.
judy48312 -- Are you on AOL?
chuck -- I understand. Ron was the one that was late for dinner because he
was delivering people to dinner on Sunday - remember. I don't like to let
him forget that.....
johni -- One of Johns cousins has recently been diagnosed as a carrier.
She has the awful dilemma of telling her children(all young adults) about
the potential in the situation. I think she is now avoiding us because she
has not told them, and seeing us brings her face to face with the
butch -- RON, the good looking guy with the two daughters who were selling
most of the cups etc. at the back of the room.
chuck -- I now understand Judy. I am on MSN but I can set that up but just
never have.
judy48312 -- Might be a good way to chat in between the chats. I do
remember the gals selling the cups. Maybe because they were in the back by
chuck -- Ron, I didn't want to get into your "looks"........LOL
butch -- What can the guys do to make the significant other's task a
little easier? I know we get grouchy at times. (to say the least). Till we
get an answer--We'll just say Thanks and we Love You.
judy48312 -- {welcome judy48312}
judy48312 -- Hello again. Darn AOL knocked me off!
johni -- I get a lot of flowers!!
chuck -- About the carriers - we know our daughter is a carrier - she
visited NIH with us for genetic couseling. She has two daughters and we
are much concerned about them, however, they won't test them until they
are 18. One just turned 18 and the other is 19 - almost 20. We have not
talked to them about this. I feel remiss about this sometimes and then
sometimes I think that this is certainly a burden to hang on them. We are
going to do this but just have not some up with a time with graduations
judy48312 -- Re John's cousins: Don's bro/sis all were tested. Luckily for
them, none have the KD gene. But one of Don's cousins has it. His bro/sis
refuse to be tested.
chuck -- Butch, Charlie says AMEN to the "GROUCHY" times, but then I must
admit I can get a little grouchy also.
judy48312 -- I'm sure it's really scary to find out you have this gene.
johni -- John was correctly diagnosed 3 years ago. We told all family
members that were relevant, some got tested some have refused.
chuck -- Don't know if you girls recall or not but Charlie's brother had
it also. It affected him differently from Charlie. His speech was greatly
affected and Charlie just has a quiver in his voice sometimes - mostly
when he is tired. His brother just passed away last Sept. at 82 years of
age. He had been in a nursing home for 2 years.
chuck -- Charlie was diagnosed in 1991 at John Hoskines in Baltimore.
judy48312 -- Gee, I sure hope I live to the ripe old age of 82!!!
butch -- I don't think it is scary to have the gene but, knowing that we
are passing it on to our children and grandchildren is very hard to deal
with. I have a cousin who I think has KD but, he refuses to be diagnosed.
Doesn't want to know.
judy48312 -- We had one friend in Mich who had KD along with 2 brothers.
You just never know who it's going to hit
chuck -- My typing leaves a lot to the imagination today. I meant John
Hopkins. Charlie will be 76 in Oct. and he said he is looking to obtain
the 82 also.
judy48312 -- And I guess if they choose not to be tested, that's their
judy48312 -- When we look back over the last 15-20 years, now that we know
Don has KD, we realize the "signs" were there for a long time, but we
didn't know what the cause was.
judy48312 -- When Don's Mom found out she was the carrier and "gave" him
KD, she was really upset about it. We just kept telling her it wasn't her
fault. It's not like she did it on purpose.
johni -- I accept that Judy. but in some cases the ones refusing to be
tested have adult children, who don't know the situation, and have no
opportunity to make their own minds up.
chuck -- Yes, Judy I do believe everyone should make their own decision of
being tested. That is a lot to lay on you and at a young age. We agree
also about the signs being there for a long time NOW.
judy48312 -- I agree with you re the adult children. It's probably very
stingy on the parents' parts but what can you do?
butch -- It was nice chatting with you all. I must go for now, so I'll say
stay healthy till next we chat. Goodbye for now.
chuck -- Charlie too feels so bad about passing it on which I think is
only a natural and normal feeling but we didn't know back in our young
butch -- {goodbye butch}
johni -- John has always been thankful that his mother died before he was
diagnosed, he couldn't bear the hurt it would have caused her had she
judy48312 -- That's what we told Don's Mom, too. Maybe the adult kids will
notice Uncle Charlie is having some problems & ask for some details???
Maybe if they find out it's genetic, they'll deal with it themselves?
chuck -- Well, I have enjoyed this very much but as I said earlier I am on
a tight schedule today, however, I said first things first so I stayed and
enjoyed the chat.
johni -- Its like everything else Judy, there are so many things we can do
nothing about.
judy48312 -- I'm glad you joined us. Not too many here. Take care of
chuck -- Judy, I am sorry to say it isn't "Uncle" Charlie - it is our two
judy48312 -- That's true Jan.
judy48312 --'re right. Sorry.
judy48312 -- I'm not sure if we covered "wives concerns" as scheduled but
it was nice to talk to you.
chuck -- No problem Judy. Thanks again for the chat. You did a great job.
Also enjoyed hearing from England. Perhaps all wives etc. are too busy. I
also went through a stage of denial. Did you?
judy48312 -- Is there anything else we want to chat about? I'm not sure
how long you want to keep chat room open?
judy48312 -- I don't think I did. We knew something was going on. After
initial diagnosis of ALS, we were glad to hear it was "only" KD.
johni -- John has always found KDA and in particular the chatroom a great
help. He feels far less isolated since he became a member. He is the only
KDer on his Doctors caseload, one of three on the Consultants, and one of
four known to the research Professor. That is isolating in itself. He
knows more about KD and how it affects sufferes than they do!
chuck -- I just must go. I "believe" you can have another 15 minutes but I
MUST move on now. Just one more thing Judy. Charlie was never miss
diagnosed. We were thankful it wasn't ALS but the impact was probably
different on us.
chuck -- Bye for now and take care.
chuck -- {goodbye chuck}
johni -- Judy I have found this very helpful. I hope it can happen again
in the future?
judy48312 -- Yes, I think the support group is great. Too bad more
can't/don't join in. There were several diagnosed with KD in Mich (6 I
think). The 3 here all use the same neurologist. We try to get together on
occasion for lunch.
judy48312 -- We're finding many KD patients were originally misdiagnosed.
More & more are being ID'd nowadays
judy48312 -- I would say let Susanne know if you'd like another chat. I do
wish it were just "the girls" but it never seems to work out that way.
It's been about a year since our last caregiver chat
judy48312 -- If you ever want to email me, it's Do put
something re KD in subject line as I'm getting so many SPAM items
nowadays. I'd hate to delete you
johni -- Will do. I type for John when he is in the chat, but today he is
watching football on TV, so I am on my own.
judy48312 -- Well, ready to sign off for today?
johni -- Thanks for that. I might do that. Its good to know I can if I
need to.
judy48312 -- Plz do. Any time. I'm on line most days. Would like to hear
from you.
johni -- Yes I'd better go. Thanks Judy. Take care, of both of you!
johni -- {goodbye johni}
judy48312 -- You both take care, too. "see you" another time. Judy
judy48312 -- {goodbye judy48312}