Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript  03-20-2010

Topic:  Open Forum

Host: Terry Waite


BEGIN CHAT

 

TerryW: Hello Stan
Stan: Good morning Terry
TerryW: how are you?
Stan: I'm doing ok. A little achy from doing yard work.
TerryW: Hi Poohs
TerryW: Same hee Stan
TerryW: here
poohsdaddy: Good Morning
TerryW: I can hardly do it anymore
Stan: How are you doing,Terry? Hi Poohs
TerryW: I am so sore
TerryW: trying to fix drip line irrigation
poohsdaddy: Do we have a topic for today ??
Stan: It takes me two days to do what used to take me a half day. My lower back is what is bothering me
TerryW: have not used the drip line since last year now many of the heads are clogged with minerals and need repair
TerryW: we are on a well here
TerryW: Hi UTE
Stan: That is a lot of work Terry. I'm on a well too.
TerryW: Stan I can only work on them for about 30 mins and I am done, cant lift my head up afterwards
Stan: I only work for about 30 min. at a time and then take a break.
UTE: Morning Terry and the rest of the gang... have you ever used Neurotin (gabapentin or naproxen) for bAck pAIN?
TerryW: UTE how have you been?
Stan: Nope, I just use aspirin or tylenol. Works fine, UTE.
TerryW: Hi Losh
UTE: Just the usual falls and strain getting up...pretty good
loshimo11: Good morning everyone. This is Luis Shimomura joining in from an overcast San Francisco.
TerryW: Hi Gary
gary_kc: Good morning. This is Gary joining in from Kansas City. It is snowing with 28 degrees.
loshimo11: Hi Terry. Hope all is going well with you.
gary_kc: Hi Terry.
Stan: Hi Gary, Luis.
gary_kc: Hi Stan.
TerryW: DO you think this health care bill is going to pass this weekend? or should I say rammed down our throats
loshimo11: Hey Stan.
poohsdaddy: I just returned home again after a lengthy stay in the hospital and nursing home.
Stan: I hope not.
TerryW: I don't like the way they are doing this
TerryW: what happened Pooh?
Stan: What happened Pooh? I was in the hospital and rehab center last year for a month-and-a-half. No fun.
poohsdaddy: Terry, I fell again on January 15th; and had to have surgery for another broken leg.
TerryW: Oh no!
TerryW: sorry to hear that
Stan: Not good. Sorry to hear that. I'm thankful I have never broken a bone yet.
UTE: Pooh...glad to hear they got you fixed up
poohsdaddy: It was the same leg as I broke in October.... just a bit higher than last time.
poohsdaddy: Is it ""normal"" to have brittle bones with Kennedy's Disease ??
Stan: Not that I have seen, but I'm no expert.
poohsdaddy: I recall that Mike Goynes also had a broken ankle a while back.
gary_kc: pooh, I took a leg bone density test last year. The result was high risk. :-(
poohsdaddy: My bone density test came back ""normal"", but the blood tests indicated a vitamin deficiency for vitamin D and calcium. The doctors have increased the dosages for both of them.
TerryW: I had that test and they said my bones were good
TerryW: I am still on my feet way more than I should be doing things around here andkeeping a weight load on my bones they said keepps them strong
TerryW: the less ambulatory you are the weaker the bones get they told me
poohsdaddy: Have you guys heard the latest about Fosamax ? I saw on the news that it doesn't always help strengthen your bones, but can actually work just the opposite for some patients.
Stan: I walk to the mailbox and back every day, if nothing else. The walk is the length of a football field one way.
TerryW: I have fallen many times here and out of all the times I have oonly cracked ribs, We also do not have concrete here, Mostly dirt & gravel
TerryW: I did not hear that Pooh
Stan: Haven't heard that Pooh, but then I don't take Fosamax.
UTE: Not familiar with Fosomax... and only have cracked most all my metatarsils in two falls
poohsdaddy: My orthopedic surgeon had me ""hold off"" on taking it while I was in rehab. He said that it works better for patients who are ambulatory... and does nothing for those who are sedentary.
TerryW: I find it interesting that we can type much better than write. my writing is terrible.
TerryW: Do any of you use facebook?
Stan: I gave up writing years ago. I should have been a doctor, then my handwriting would be normal.
TerryW: if so, look me up and friend request me
Stan: Yes, I'm on FBook.
UTE: No facebook yet as I'm computer illiterate so far
poohsdaddy: Yes Terry... I am on Facebook; and have found Murray
TerryW: find me
poohsdaddy: Williams, Mike Goynes, Ed Myertholen, and Angela Kokkinis so far. I'll have to look you guys up too.
TerryW: I am easy to find
loshimo11: On the subject of handwriting, my handwriting skills disappeared many years ago. I now use online paying facilities to pay most of my bills.
Stan: My whole family is on FBook.
TerryW: Sometimes I go to the grocery store and the isles are so cold that when I get to the cash register I cannot even sign the credit card slip
TerryW: embarrasing
TerryW: if you friend request me on facebook send a short note so I will know who you are. thanks
poohsdaddy: I like using Facebook... and finding many relatives and friends are also there. I play a few of the games on a regular basis.
Stan: I hear that
TerryW: My wife Susanne is out of town on a photo safari
UTE: Terry. is that an African Safari?
TerryW: No it's in San Diego
TerryW: LOL
gary_kc: I can write letter half page. I need to wait for a while. It is also hard when it is cold weather.
TerryW: photo expidition allover the city
UTE: I guess those killer-whales can be just as dangerous.
TerryW: Has anyone ever heard that Aussie motivational speaker that has no arms & no legs? he is good, He is on Youtube
Stan: Could probably browse the web and find what she needs, unless she needs photos of the specific buildings the company covers.
poohsdaddy: My younger brother is coming here today to install a handrail orr grab bar in my shower. I have also been demoted to a two-wheeled walker.... until it's safe for me to get back to the four wheeled one with hand brakes.
TerryW: The photo thing she is on is to teach her new photo stuff
Stan: My daughter had to do that for her one class at estern Mich.
poohsdaddy: Is she a professional photographer... or very talent amateur ??
Stan: Western Mich, sorry.
TerryW: She is semi pro, she has been published in the Yosemite Park visitors guide and she is the official Rodeo photographer for the rodeo here
UTE: Stan...I was about to say I went to the lab school at Eastern...but I also went to a summer seminar at Western Mich
TerryW: Here real work is a commercial lines Insurance broker
poohsdaddy: Did everyone get the KDA survey recently ?? Terry, how was the response ?? to increase participation, etc. ??
TerryW: she is just getting into weddings now
TerryW: Pooh, That is bruces baby, he gets all the results back to him.
Stan: Terry, Cool. My brother has done some work on brochures. My daughter hopes to do some of that.
TerryW: I think it is going well from what i heard last time
poohsdaddy: Has Bruce given you any feedback about it ??
TerryW: see above :)
TerryW: THe image stabilization is a must for me taking pictures
TerryW: plus I have to be sitting or leaning against something to take a photo, if not, as soon as I look thru the eye piece I lose all sense of balance
Stan: I use a tripod and a remote
UTE: The cameras keep getting smaller and smaller as well as the buttons so I usually let someone else take the pictures
poohsdaddy: I use a Polaroid camera that we got several years ago; and it gets more difficult to find the film for it.
TerryW: I fried a corless phone the other day, I carry a cordless phone with me everywhere I go on the property in case I fall. I was going to go out in the Spa and I put it in my shorts, After about 5 min I remembered it was in my shorts LOL
TerryW: I dried it out but now it gives me a message to load base data when I turn it on. I think I shorted out the main program
TerryW: Oh, well I have 3 more handsets
loshimo11: Just out of curiosity Terry, what kind of cordless phone do you have? I'm looking to replace my exisiting system but can't decide on what to get.
TerryW: AT&T
TerryW: Its the new frequency type has very long range
TerryW: covers the whole 5 acres + some
loshimo11: Is it a 2.4 or 5.8 ghz? I'm looking at the new 6.0 version.
TerryW: 6.0
poohsdaddy: Sounds familiar.... I acidentally called 9-1-1 while I was in the nursing home. The police were very quick to respond... and showed me how to ""lock"" the keys when not in use.
TerryW: works fantastic, unless you submerge it LOL
gary_kc: Terry, I used to carry a whistle in case of I fell down. It is sometimes better than cell phone.
loshimo11: Sounds like that's where I need to go. I'm having reception problems with my 5.8 so I guess I'll try the new 6.0.
TerryW: where I live a whistle would not work, All that would come are birds probably
poohsdaddy: My wife wants to get an ""air horn"" for me to keep with me at all times.
TerryW: ha
TerryW: Kind of a slow chat day today
UTE: Maybe it's because it's the 1st day of Spring?
poohsdaddy: It seems that the number of participants increases whenever we have a guest speker or specific topic.
TerryW: yes,
Stan: I guess so. Maybe we need to have a spcific subject scheduled for each chat to have more interest
TerryW: I have been trying to think of new topics
TerryW: like, ""You and your toilet"" LOL
Stan: Let's see, Basketball playoffs, your favorite jokes...
poohsdaddy: Has anyone heard of any new medications or research lately ??
UTE: Not a bad subject... in public I need the hand rail and power chair to get off it
TerryW: the last transcript they talked about the latest research
TerryW: seems promising
Stan: Just the one that Bruce posted this week on two studies that suggest we may lose our minds as well.
TerryW: lose outr minds?
TerryW: I have lost mine already
Stan: Of all my mind I miss, the things I miss the most
loshimo11: No, but I ran into an european outfit that sells what is most likely snake oil and they claim to ""ease"" the KD symptoms. It's some type of oil and sells for about $79,00
loshimo11: That was $79.00.
TerryW: sounds like a scam to me
poohsdaddy: They had discussions groups while I was at the nursing home. A couple of the topics included ""Safety in the Home"", ""Medication Management"", and ""Dealing with Depression"", etc.
Stan: I can buy a lot of Baily's for $79
loshimo11: I was tempted to try it, but I'm running into other medical issues that I don't want to compromise.
TerryW: I see
Stan: I got that too when I was in the rehab center, Pooh
TerryW: How to say no to yourself. when you try to do things you should not
Stan: Doesn't work. I'm too stubborn. I don't listen according to my wife.
TerryW: me to
UTE: Yes, can't give up on will power
TerryW: If I am going to die, I am going to die trying
poohsdaddy: Most of it was just ""common sense""... and just learning to be aware of your surroundings... and always be careful. One step at a time, etc.
TerryW: We have lots of shirts for sale
Stan: Sounds like a good subject for a chat, or even the forums, Pooh.
TerryW: Time for me to go put my horses out to pasture
UTE: That's a nice looking shirt... I better get one
Stan: Do they come in Flannel?
TerryW: Yes, they are niice
TerryW: no, sorry stan
Stan: I guess I'd have to wear two. : )
UTE: Terry, you be careful out there! as the TV show use to say
loshimo11: Well guys... it's time for me to go. Stay healthy and vertical until the next chat!!!!
TerryW: I will talk with you all again soon
poohsdaddy: I got the e-mail about them, but have to wait for $$ to order one. Was there a choice of color ?
TerryW: pooh,, only one color, light sea green
TerryW: this was in order for the logo to stand out
TerryW: or parts would blen into the color of the shirt
TerryW: bye everyone
Stan: Ok. Take care everyone.
poohsdaddy: Time for me to get going too. Thanks for being here today to all. BYE :(
gary_kc: Bye all.



END CHAT