Kennedy's Disease Association

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Kennedy's Disease Chat Transcript  08-20-2005

Topic:  Learning from challenges in life

Host: Bruce Gaughran

 

Chat Participants:

Bruce
Terryw
murf
kelly
Gopher
billeric
loulou
Gary_KS
denny

BEGIN CHAT

Bruce entered the room.

Bruce's new status is 'administrator'.

murf entered the room.

Bruce: Good Morning, thanks for joining me today. I was just singing, "All alone am I ..."

murf: Morning Bruce

Gopher entered the room.

Bruce: Morning Beverly

murf: Morning Beverly

murf: Hows the weather up there?

Gopher: Morning it's a beautiful day in MN

Bruce: What is the weather like today in the Gopher State

LouLou entered the room.

Bruce: We are going to be 95 and humid in Georgia today.

Bruce: Morning Ron

Gopher: about 70degrees going to78

murf: Bruce - still can't open your document or up-date with Johns CDs

murf: 88 in Houston

LouLou: Hi Bruce--Hope you are healing.....

murf: Morning Ron

Bruce: What is the problem with the CDs

murf: The key

Bruce: Ron, I am slowly ... very slowly healing. Thanls

Bruce: What about the key?

LouLou: Hi Murf and Gopher.

Gopher: hi Lou Lou

LouLou: Murf--are you ready for John's hoe-down.

Bruce: Ron, we haven't been hearing much from you recently. Is your computer fixed?

Gary_KS entered the room.

Gary_KS has left the room.

Bruce: Morning, Garu

Bruce: Gary

LouLou: Yes--have been traveling--alot of day trips.----thanks for your concern.

LouLou: Hi Gary.

Bruce: Murray, the registration (key) number they provided doesn't work when you type it in? Is that the problem?

billeric entered the room.

murf: Thats right

LouLou: Morning Bill.

Gary_KS entered the room.

Bruce: Morning, Bill Have the monsoons ended down there yet?

murf: Morning Bill

Bruce: Morning, Gary

billeric: Morning guys from hot and humid Cincinnati

Gary_KS: Good morning, all. Gary Uchiyama joined from Kansas City.

billeric: Visiting our son in Cincy so don't know Bruce

Bruce: The zeros and 'O's look a lot alike. I did not have any problem with my installation. Ron, how about you?

LouLou: Mine was OK---no problem.

Bruce: My sister told me it has been raining quite a bit down there. She lives in Gold Canyon.

Bruce: Murray, perhaps we could talk later and I might and I emphasize might be able to help.

billeric: Think your right Bruce but they can use it all.

Bruce: Bill, my impression was that most of it was soaked into the sand and when that was saturated, it flooded

Bruce: Gary, how about your weather today?

LouLou: Talked with Ralph Glick--Says brother Peter Glick not doing well. Tried to talk them in to coming onto the chat today.

Bruce: The subject I selected for todays chat was: Learning from Challenges in Life.

Gary_KS: It was heavey rain last night but it is now overcast in KC now.

Bruce: This is something I have firsts hand experience with this year.

billeric: Our neighbors down there said they got 2.5 inches in a rough storm. Lots of trees down etc.

Gopher: Bruce, how long have you had KD?

Bruce: In January, I fell and broke two bones in one leg and one bone in the other. When I was finally healed for a month, I fell again and broke two bones in the left leg.

Bruce: I begin to see signs of it in the late 20's and by the early 30's I knew something was up. I am now 58.

LouLou: Learning from challenges---meaning living with-in our limitations...RIGHT!!!

Bruce: For 9 weeks this summer, I could not put any weight on the left leg and had to keep it elevated for 20-22 hours a day.

Bruce: Yes, Ron, and more ... when because of an injury you have even more challenges.

billeric: Man Bruce you have had challenges.. I fully believe falls are one of our hardest challenges. If I get through a week without one I feel good.

LouLou: Murf--did Dr. Fischbeck say when he wants to come on the chat again?

Bruce: Anyway, I learned that I could survive and even found some benefit from these two experiences and I was hoping to hear some positive stories today about all of your experiences.

Gopher: 58 and fromAustin MN...I don'tremember your last name, but I wentto West for 7th and 8th grade

Bruce: Gaughran ... Neveln, then Junior High and Senior High

Bruce: So Bill, you mention plenty of falls, but it sounds like no serious injuries. That is great!

Gopher: I was at ShawElementary..also 58 years old

billeric: At 70 I guess I am one of the older KD ers. Slowing down and accepting you have problems still seems to be one of my bigger challenges.

Bruce: The most difficult part of the recovery process was not being able to use the left leg and having not enough strength in the right leg to balance myself. I learned to do a lot of sliding from the wheelchair to the john, bed, etc. I also couldn't go anywhere except to the doctors office and that was by paratransit.

Gary_KS: Bruce, it is very danger to walk since your legs are so weak. I use wheelchair in home all time or electric sctoor to go outside because I always fall now.

Gopher: that was tough, Bruce

Bruce: My brother, Kerm, lives in Phoenix. He is retired and has KD also.

billeric: I have broken one ankle. Stemed from walking without a cane. Sometimes I just take off without it and then realize this is not good.

denny entered the room.

LouLou: I still find it interesting how KD affects people differently. Some get weaker quickly--some fall regularly. Wonder why so different results for us.

Bruce: Gary, I am stubburn and that causes me more problems then anything. I want to remain mobile as long as possible. But, these two falls have given me a new perspective on life. Health is better than injury any time.

Gopher: what kind of symptoms do you have LouLou?

Bruce: Morning, Denny

denny: Hi.

Bruce: How are things in Ohio this morning?

denny: Hot

Bruce: I am also finding that even though my arms are not real strong, their strength is vitally important to sliding around.

LouLou: My symptoms I feel are mild compared to some. I am 65 yrs young. Swim or run in the pool for at least 30 min to an hr each day. I think this helps.

Bruce: I had one blessing in this whole experience and that was the purchase of a new Jazzy in late December. If I hadn't had that, I would have gone crazy.

Gopher: Roger's symptoms are twitches and numbness in the feet and swallowing problems

kelly entered the room.

Bruce: Morning, Kelly, how are things in SASK today?

Gary_KS: LouLou, it is a good question. I have the same question. Can anyone help us?

kelly: it's going to be a nice day today.. it's been cold lately

LouLou: I have had alot of trouble swallowing and talking--pronouncing some words. Don't know why.

billeric: My doctor wants me to take 2 calcium tablets a day to make sure if I fall I have a decent chance of not breaking a bone. Hope he's right!

Bruce: I spoke with my neurologist about different symptoms and he felt it was because of over-use or lack of use of certain muscles plus the types of injuries one had earlier in life. I think he was just guessing, but probably an educated guess.

Gopher: Is there a good exercise program for KD?

kelly: I have been having swallowing problems as well? same with nasel voice part of kd bulbar sytoms etc

Bruce: Beverly, I believe so and my brother swears by his. You can read about mine in the 'stories' section of the KDA web site.

LouLou: Gopher--do what you can but don't over-do...

Gopher: thanks

Bruce: Nasal voice ... that was explained to me as the muscles in the sinus cavity area weakening.

kelly: yes correct bruce. yup

Bruce: Swallowing is something I don't have much of a problem with, but when it happens it is scary for my wife and me.

billeric: I think most of us have a nasal voice.

Gopher: someone mentioned jarw exercises last time

Bruce: I call it a twang!!!

billeric: May be right Bruce.

kelly: yup for sure as for me? i went to drink my coffee, and it came out of my nose,lol instaed.

Bruce: Now some have a pronounced lip droop while others do not.

Bruce: I just have a crooked smile, but no real droop.

kelly: also when i frown my facial mucles will spasm out to gosh i hate that.

billeric: Me too Bruce.

Bruce: Swallowing is oone of those things that we all need to work on daily. I only have problems when I forget and try to talk, breathe and eat at the same time. Is that called multi-tasking?

LouLou: Right Bruce--I notice my bottom lip droops making it hard to eat certain things or pronounce certain words. Once it happens--I think it gets worse brecause I notice it.

Bruce: I have also found that some symptoms appear and then for some reason disappear for some time. Anyone else have that experience?

billeric: Cereals seem to bother me most. Seem to go to the back of my throat and make me cough.

Gopher: yes and then we wonder KD or what?

Bruce: Kelly, the answer is to turn that frown upside down! Just kidding

kelly: I wonder bruce? do all of us kd'er's have muscle spasms till the end of our kd??? i have them all the time very painful and severe.@ nite esp.

kelly: lol ok bruce hahahah

Gary_KS: Bruce, can you please explain in detail what symptoms were?

Bruce: My are not painful any longer. The severity of the spasms went away after I began to stretch. I still have spasms, but the severity of them is nothing but an irritation today.

billeric: I am not bothered much by muscle spasms Kelly.

Bruce: What symptoms, Gary, the ones that came and went away?

kelly: really yeah?? were all differant i guess?

Bruce: No painful spasms - Maybe that is one of the benefits of age.

billeric: Got to be some benefit Bruce.

LouLou: My smile has become more of a snear than a smile. Just another challenge to appear as happy as I really am.

kelly: maybe once the spasm's are gone? then weakness set's in in term's of walking lifting etc ?????

Bruce: Possibly, Kelly.

kelly: yup ty.

Bruce: I remember several years ago having those cramps and the muscles would sometimes ache for days.

Bruce: By the way, before I forget, I want to thank Murray for the wonderful fall line up of guests on the chat room. Nice job!

kelly: yeah Bruce, i get them so bad!,,I cant do anything but the pow-wow lol gosh it hurts.

Gopher: I have worried about that...when spasms get less is that bad? but Gamapentin works well for spasms

Gary_KS: Kelly, I don't have spasmes. I had twiching lots for face, fingers and legs, but it has gone.

Bruce: But, stretching does help. When I have knotted muscles, I focus on releasing the knots and stretching the muscles out with gentle stretches. Boy, does it help.

kelly: gopher i tried nerontin it doesnt help me just makes the spasm worse for me??

kelly: thank you bruce I"LL do that next time i spasm out

Gopher < that is sad Kelly

LouLou: Kelly--try naproxen--seems to work for me.

kelly: yeah i have tooth pick arms and skinny legs big calves

Bruce: My doctor felt the spasms were a release and a necessary part of the process.

billeric: I was on Neurontin for a couple years. Quit last fall and haven't noticed any change. I don't think it did much for me.

kelly: ok ty lou lou

kelly: and a big belly lol

Bruce: I think we need to hear more from the sages in our community. People like Bill and Ron who have survived with this disease for many years. I am just a youngster at 58 and still have much more to learn.

Terryw entered the room.

Bruce: Morning, Terry

Terryw: Hello all

Gopher: hi Terry

kelly: yeah iam just a baby here bruce only 42 yr old

LouLou: Hi Terry.

billeric: Hi Terry.

kelly: terry nice to see you join us good morning

Terryw: ty

Bruce: My brother who is in his 70's has done remarkably well with KD. He exercises every day. He also has his share of falls, but for some reason hasn't broken anything. He contributes that to the amount of beer he drinks. :-)

LouLou: Terry--have you seen your wife lately. She is one busy person.

kelly: Beer ???? lol i heard that to? bruce maybe i shoud start drinking lol

kelly: //20

Terryw: I see her a bit more in the evenings, she is trying to cut back work a bit

billeric: Atta boy Kelly

Bruce: When I was 42, I was one of the dumb ones who felt that if the muscles were weakening, push yourself harder. I lifted more weights, ran on the tread mill, hiked for hours up and down mountains, ... all the macho stuff. The doctor said I burned out my muscles early in life.

kelly: lol thanks bill//60

LouLou: I have a shirt which says "help me--I've fallen and can't reach my beer."

kelly: lol call 911 lol. just jokes

Gopher: Did anyone see Goodmorning America when they had Diane standing on one foot?It's good for muscle memory

Bruce: I gave up drinking many a year ago, but recently have thought about a glass of wine at dinner.

kelly: same here bruce over 10 yrs for me

Bruce: Beverly, that exercise is part of my exercise program today. I practice it twn-twleve times a day.

billeric: I sure can't stand on one foot. That left me years ago.

Bruce: Now, I do hang on to a bar when I do this ... just in case.

LouLou: Did you notice that is when the KD symptoms began--Don't give up drinking totally. LOL

Bruce: Ron, I never thought of that.

Bruce: I met a gentleman on the chat a couple of weeks ago from Washington who was 78. He was anxiously awaiting a cure because he wasn't ready to leave this world yet. What a great attitude.

LouLou: What happened to Murf--Thanks for a great line-up for our chats. Good job Murf.

kelly: wow it's great, to be so positive with our medical condition, yup.

Bruce: One of the wonderful benefits of the chat is that we have a chance to share experiences and read about how people cope with KD. There are some great stories out there.

LouLou: Some funny--some sad!

billeric: I agree Bruce. The conferances were top too in that regard.

Gopher: yes,i have read some and they are so helpful for people who are newly diagnosed

kelly: yes Iam so grateful to kd ass for all the info and support etc.

Gary_KS: Bruce, I strongly agree to your opinion and I would like to say "Thanks!" for Suzanne and Terry.

Terryw: I need to update and add to my personal story on the site

Terryw: It's been a long time

kelly: yes u do terry lol good idea. lol

Bruce: Back to the subject for a moment, after my fall we found the local medical supply store had an abundance of equipment to help me move and transfer. I would recommend a visit when you are healthy to see what is available and what might help today. In mid-October, one of the owners of our medical equuipment store will be a guest on our chat room to discuss what is available and what might help.

Gopher: TY Terry and Suzanne

LouLou: Bruce you are right. Sharing experiences makes us all appreciate what we have--without dwelling on what we don't have.

Terryw: YW

murf has left the room.

billeric: Good idea Bruce

Terryw: I was telling bruce that the other day I tried to use my electric weed wacker in the garden and I lost balance and the whacker sliced up my ankle as I fell back

Terryw: I am glad it was not my gas brushcutter

Bruce: Some of the items work (help) and others do not offer any benefit. The only way to know is to check them out and even try a few. Our store lets me take them home and give it a try to see if they have a practicle application.

LouLou: Once again--if you need hospital equipment of any kind--call your local Lions club or Am Legion or VFW. My Lions club loan out Hospital beds, wheel chairs, walkers, canes, potty chairs, shower chairs, etc. Don't buy if you can get it free.

billeric: Sounds bad Terry but all of us can understand this tripping and falling bit. Hoses and electric cords are my worst enemies.

Terryw: I even trip over tall weeds

Terryw: they wrap around my shoes

Bruce: Another item I must mention, my doctor has me practicing coughing ... hard coughs. It is a way to clear the throat and even more important, clear the lungs in case I ever become sick. Give it a try sometime. Use your diaphragm to expell the air. It works.

billeric: Fully understand Terry

Terryw: they throw my balance off

billeric: Which we don't have much to begin with Terry.

kelly: Well friend's got to go here all of u take care and god bless ok bye room.

Terryw: It's amazing that the clearance betweeen our feet and the ground has deminshed so much that a electrical cord can be in the way just laying flat there on the ground

billeric: Bye Kelly

Bruce: Terry and I talked about something else recently. We both wear high-top boots (above the ankles) to protect the ankle and help with our balance. They have tennis shoes and hiking boots (both light-weight) today that are affordable and really help.

kelly: bye bill and all

kelly has left the room.

Terryw: yes bruce

LouLou: So long Kelly--Stay healthy.

Gopher: what about light weight shoes...that is what we are looking for..Did findsome rockports

Bruce: I love my boots. They are Sherpa Hi-Tec. When I wear them I have more control of the ankle and foot area. I now need something for the knee that buckles.

Gopher: how heavy are they bruce

Terryw: I have to go and get some things ready for our board meeting. Was good chatting. Talk to you all later.

Bruce: I use to wear rockports, but found that I didn't have enough support. I have probably five pair of Rockports (dress and casual) in the closet that I cannot wear any more (balance issue).

billeric: I am always looking for light weight shoes and sandals. They are hard to come by.

LouLou: So long Terry.

Terryw has left the room.

Bruce: As light as a normal tennis shoe.

billeric: Bye Terry

Gopher: are they good in the snow,Bruce?

Bruce: I have found that lightness is important, but support is even more important because we don't walk that much anyway.

denny has left the room.

denny entered the room.

denny has left the room.

Bruce: I have wore them hiking in deep snow at the 6-8000 foot level in the mountains.

LouLou: Hey Denny--are you in or out?

billeric: Got to go guys. Nice chatting with you. Stay upright.

Bruce: Take care Bill. Have a safe trip home.

billeric has left the room.

LouLou: So long Bill--stay healthy till next we chat.

Bruce: We are down to the few, the proud. etc.

Gopher: TY got to go buy groceries

END CHAT