Kennedy's Disease Association

"Every few days a baby boy is born with this DNA defect"

Kennedy's Disease Chat Transcript  05-21-2005

Topic:  Open Topic

Host: Bruce Gaughran

Chat Participants:

Bruce
LouLou
MikeG
doughboy
Terryw
loulou
kelly
denny
murf
MICH

BEGIN CHAT

Bruce: Good Morning, Murray

murf: Morning all

LouLou: Hi Murf. Thanks for the beautiful pictures of springtime in Texas.

murf: I'm going to give TJ a call

murf: Mean looking weather

Bruce: Murray, I talked to John for a couple of minutes this morning while he was driving to the ordination. He said he didn't get your message until late and wanted to know if we talked. I said yes.

Bruce: The turnout isn't very strong this morning. Let's hope a few more people join us.

LouLou: I can't understand why Norton just disappeared off my computer. No protection.

murf: I left a message with TJ so hopefully he will join us

LouLou: Hey Bruce--it isn't 10:30 yet.

murf: I guess John won't be here either

Bruce: By the way, I am seeing my neuroligist in two weeks. I am going to ask that he put me in touch with the guy that creates AFOs. My doctor believes he can design one for the knee that will support me better if it buckles. It will be experimental, but I am ready to try anything about now.

murf: Ron - are you sure you've lost Norton or just the icon

LouLou: Did you save the chat?

Bruce: No, I can only save it after we are done.

kelly entered the room.

Bruce: Good Morning, Kelly

kelly: good morning all

Bruce: How is the weather up in Sask this morning?

LouLou: Murf--I lost the Norton protection for my computer.

murf: Bruce - Let me know thats how I broke my foot the last time. My knee buckled

murf: Morning Kelly

kelly: hi murf how;s it goinn?

Bruce: It just happened to me again a week ago Friday. I broke three metatarsels.

LouLou: Hi Kelly. How are you?

kelly: its cool and raining now

kelly: lots of severe muscle spams

murf: 77 here in Houston on its way to 95 today

kelly has left the room.

murf: oops

Bruce: What is the oops about?

LouLou: It has been chilly here in Pennsylvania. Looking forward to warmer weather.

kelly entered the room.

Bruce: Welcome back

kelly: back???

kelly: darn pc lol

murf: Kelly where did you go?

kelly: it kicked me out???

Bruce: Kelly, you were commenting about the severe muscle spasms. Are they in a particular area of the body and how often?

Bruce: Kelly, you also mentioned once how old you are, but I forgot.

kelly: at nite really severe in my legs, calves, thighs feet, even when i turn over in bed i spasms out//10

kelly: iam 42

Bruce: A young fella!!!

LouLou: I can't even remember 42.

doughboy entered the room.

murf: TJ good morning!

kelly: this past week i having been having a bad kd week

Bruce: I used to have the leg spasms (charlie horses) when I was in my late 20's and early 30's. I occasionally cramp today, but nothing like the old days ... thank God.

doughboy: Good Morning Murf and everyone else!

Bruce: Morning TJ

LouLou: What is a good KD week?

doughboy: Hey Bruce

murf: How's it going TJ?

kelly: so bruce? does the cramps fade away? into the progression of kd??

kelly: as we age

Bruce: I understand, Kelly. There are days where things aren't quite as bad and other days where I am washed out and just plain weak.

doughboy: Bout the same, trying to fiqure out how to quit worring and stressing out! The effexor, Zoloft and Xanax ain't working!

kelly: yeah no doubt bruce,..... yup

murf: I have pain when I have over done it.

Bruce: Yes, they eventually became less severe and eventually disappeared. I still have muscle tremors, but nothing painful in the legs. Now, if we want to talk about arm pain, that is a recent event. Especially the left bicept and tricept.

LouLou: Every day you can get up out of bed to face the day is a GOOD DAY!!!

murf: TJ do you have a short term disability plan at work?

doughboy: No, in order to get it I would had to have a physical

doughboy: The arm pain is not good for me either, neither is the chest pains

kelly: my 2 yr is up now? on dissabiltiy ,,,so ill have to wait and see what happens to my pension fron here on??

doughboy: Good Luck, Kelly

Bruce: I have noticed a significant reduction in arm strength ... especially lifting strength ... this last year. I am also experiencing more twitching in the facial area.

kelly: thanks

murf: I go lucky and all I needed to do was not have a claim the first year and mine kicked in

LouLou: Don"t you want to take a physical for the short term disibility?

kelly: yup me to bruce bigtime? sometimes i cant even hold a coffee pot?

doughboy: I have to be off work for 3 months before I can get on ours at work.

Bruce: Do you have an exercise program Kelly?

doughboy: Lou, I can't, I won't pass it.

kelly: yup 3 months of diss and after that long term kicks in doughboy

murf: I don't get the facial twitches any more

Bruce: I had six months of Short Term and during that time I applied for Long Term and SS-D.

kelly: nope not yet but yah i should have one! bruce

doughboy: Well is there anything new in the way of clinical trials or discoveries in the KD field.

Bruce: I have a light exercise routine that I go through every day for 45-60 minutes. It includes stretching and muscle tension exercises.

LouLou: I guess I was lucky. At 62 I took early retirement and thanks to Bruce, and his help I received disibility at 65.

murf: But sometimes my back or stomach goes nuts

Bruce: Murray, are you talking tremors and spasms?

kelly: holy crap my stomach muscles are always popping out sure is painful

LouLou: Popping out like a six pack? I have a keg....LOL

kelly: lol hahahaha yup

murf: Mostly tremors it dosn't hurt

kelly: like a golf ball for me lol

Bruce: TJ, I haven't heard anything new from our doctors that can be distributed. We do have some news but can't talk about it until the findings are published. I can say that it is not a cure or any miracle, just some positive news and another step forward in this long process.

murf: Me too Ron LOL

MikeG entered the room.

Bruce: Morning Mike

MikeG: Hi Bruce

Bruce: What is the weather like in Tampa this morning?

LouLou: Hi Mike.

MikeG: Hot

murf: Mornin Mike hows sunny Florida?

MikeG: 88 already

MikeG: Just got back from Memphis - Air Force reunion...

Bruce: Sometimes, after I finish my exercise program, I have the tremors all over my back. At times it actually feels pretty good ... like the muscles are un-knotting (is that a word?)

doughboy: You know everyone, we have to work on keeping the chats alive and notifying everyone. We need to try to get more participation. Hey Bruce, I was denied because I'm still working, which really I'm not. I'm just showing up and doing not hardly anything, but because I'm drawing a paycheck still I don't qualify. However, in order for me to pay my bills I have to have some type of support before I quit my job! Hey any good or positive news is welcomed. Keep us informed, Please!

LouLou: How was it seeing some of the old faces?

MikeG: The power chair that my Air Force buddy in Orlando gave me saved me this trip!

Bruce: Did you drive or fly, Mike?

doughboy: How's the foot Murf?

murf: TJ - I'll be taking more on for the chats. The foot is still swollen but getting better

Bruce: TJ, the BOD is discussing changing the chat room process. More specific topics and more guests. You should here more shortly.

MikeG: Drove - and yes it was great seeing people that we hadn't seen since 1970 in Japan.

doughboy: I fiqured it out. You keep thinking while you are sleeping that your kicking your EX and it's actually the wall, no wonder you've broken your foot 4 times in the last year!//4

LouLou: Murf--is that 4 or 5 times this year? You need some support for the knee or the foot.

Bruce: Mike, we were talking about spasms (painful and otherwise). Do you still have any painful spasms?

kelly: yeah bruce? we should have neurologist;s and gp;s on our chats???? that would be very informative hay?

murf: Ron - I need knee support this is # 4 this year

doughboy: That's great , Bruce

MikeG: Not any more but in my 40s I had bad leg and foot cramps.

MikeG: It would wake me up and get my attention fast!

doughboy: Hey that's a good idea, Kelly!

kelly: mike as for me iam 42 yrs old and in the severe muscle spasms of kd bummer!

Bruce: I'll let everyone know if I can be fitted for the experimental AFO for the quads and knees. This guy who develops these devices is from MIT. My doctor believes they should be able to come up with something that will work.

kelly: thnaks doughboy

murf: TJ LOL im a little slow this morning

MikeG: Kelly, are you on Neurontin?

doughboy: Have ya'll tried Mirapex for spasms, works okay!

murf: Is that the robot suit Bruce?

doughboy: I tried Neurontin but made me feel weird!

kelly: i was but it made me worse in terms of sporadic ataxia?

kelly: gabapentin is no good for me

Bruce: No, I will wait until they mass produce the suit before I invest. This is designed after the foot device (AFO), but is designed specifically to keep the knee from full buckling.

MikeG: I'm on 600mg of neurontin at night - it really helps me sleep better.

murf: I've never tried it and won't now

LouLou: I am looking forward to the NIH trials that should be taking place late spring or early summer. Dr Sharu Chen will be at the helm.

doughboy: What's that about

murf: Ya I don't have $20,000 to spare either

Bruce: I know Murray has trouble with knees buckling occasionally, does anyone else have that problem?

murf: Thats the trials I told you about TJ

LouLou: They will br trying some new procedures and meds on those who participate.

doughboy: Hey Murf, maybe you'll win the lotto 2 nite. Oh, okay!

murf: I need to buy a ticket first

doughboy: I see Lou!

murf: Or can you win without one? cool

doughboy: Yep, can't win without one!

murf: I heard you were going to win TJ

LouLou: I wonder where Terry and Susanne are?

Terryw entered the room.

doughboy: If I win you and all of KD members and Association wins, buddy

MikeG: So how many are going on the cruise Murray?

kelly: lol

murf: Morning Terry

Terryw: Morning, Just woke up

Bruce: I wanted to mention that I am wearing high-top hiking boots these days. They go just above the ankles. My doctor recommended them for ankle stability. They really seem to work. It has been about six months now and I can tell the difference in my balance.

Terryw: Must have been the Darvocet

kelly: hello sleepy head lol

Bruce: Morning, Terry

MikeG: morning Tery

kelly: wish i could sleep lol

LouLou: Look at that--I ask where Terry is and he pops up--Good morning Terry.

doughboy: I have been trying hi toppers also, seems better

murf: We have 8 cabins booked and I'm about to call out for more

Terryw: You guys talking about ankle support

Terryw: ?

doughboy: Yep

Bruce: The boots I use are lightweight and very similar to my jungle boots (Vietnam days).

Terryw: I have started to have bad problems with my ankles in the last year

doughboy: Where to you get them

Terryw: twisting sideways

kelly: ur a vet from vietnam? bruce?

Terryw: High ankle support shoes do help

MikeG: Great! I'm looking forward to it.

murf: Also knee buckling Terry

doughboy: Are they a specialty shoe

Bruce: Terry, I we have been talking about knees buckling, falling, spasms, etc.

Bruce: Yup, Kelly - two tours.

kelly: wow!!!!!

doughboy: Yeah, Murg needs a parachute, hah!//1

Terryw: I use Lightweight Hiking boots that go just above the ankele and lace all the way up

murf: I don't know if it would open in time TJ LOL

Bruce: No, TJ, I just tried them on and felt comfortable. My are called High Tec Sherpas.

doughboy: Thanks for your couraegous duty to your country, I appreciate it!

kelly: i have been having shooting pains in my lower back? when o go walking in the malls???

kelly: and legs are so weak at times ?

murf: I think we all do Bruce Thanks!

Terryw: Kelly sounds like the sxiatic nerve is being aggravated or a nerve in lower back disc

Terryw: Sciatic

doughboy: Hip Hip Hooray, to Bruce, everyone

Bruce: Malls and WalMarts are killers to my legs and feet. The concrete floors just take everything out of me. The last few visits I used my power chair and I actually enjoyed myself again.

kelly: is that kd related terry?

murf: I have a tough time halling around my weight

Terryw: Kelly, don't think so but you never know

kelly: oh, ok?

doughboy: I have been using the scooter and it is more pleasent

LouLou: It seems my walking days are getting shorter all the time. I seem to get more tired even on short strolls. Can't wait till the weather warms up so i can run in the pool once again.

doughboy: Does that help, Lou

Bruce: Mike, you mentioned a friend let you use a power chair for the trip. Do you use anything else to get around?

kelly: i can totally relate to that? lou lou

murf: I can't get around without my chair. I can't imagine life withoput it

doughboy: Does MD Association help you get chairs or scooters if your not actually on disability? Does anyone know!

LouLou: It sure seems to. Being able to walk-run without carrying your body weight is good exercise.

murf: Noe if I can get my fingers to work I'll be doing good

kelly: yup murf i assume ill be needing one soon in the foreseeable future? but gosh i hope not

doughboy: Sounds plausible, Lou Lou

Bruce: Since all of my accidents, I now have a full arsonal of equipment. Power chair, walker, two canes, two soft cast boots, one wooden shoe, one ankle brace, ... I am certain there is more in the closet if I think about it.

murf: TJ - MDA will help $2000 towards a chair and $500 per year on repaires. I use this all the time

LouLou: Terry--how are you doing after your fall?

doughboy: Might loan Murf some of it Bruce,LOL///19

Terryw: Doughboy, you need to be registered with the MDA

Terryw: my fall?

doughboy: I am Terry

Terryw: I fall all the time

Bruce: TJ, the MDA will help with a chair. You need to first work with your doctor to have him specify a need, and then you will probably need an occupational therapist type person to validate the need. Your insurance company should still be the primary and MDA will pick up the rest.

Terryw: no injuries

murf: Bruce I also have two canes a walker and a chair. Kelly - don't let pride stand in your way.

kelly: yah ok

MikeG: Bruce - my AF buddy in Orlando actually GAVE me the Jet3 chair that he had gotten for his mother. She went into the hospital with cancer before the chair that they got from Medicare even arrived. He gave it to me 2 years ago and then he passed away last December from cancer also.

Terryw: LOL Pride is a Powerchair manufacturer

kelly: thnaks

kelly: lol

Bruce: Thanks, Mike. For some reason I thought you had a power chair from an earlier chat, but wasn't certain.

murf: Good one Terry LOL

doughboy: Yeah and he still breaks his foot! Dr.'s have a standing appointment for Murf every 3 months to fix his foot! LOL//49

LouLou: I know you said you have had several falls around the ponderosa. How is Susanne healing? OK I hope.

murf: LOL ok Ok

Terryw: SUsanne is now in a short cast, She get the pins taken out in 2 weeks

murf: I guess I should use my chair more Kelly!

Terryw: shes been working now on straightening her arm

kelly: yup good idea?, murf

murf: I got it 2 1/2 years ago

doughboy: Twas my point, Murf, ole Buddy

Terryw: The water is really flowing here, Yosemite Valley may claose again this weekend

Bruce: Murray, what type of transfer system do you have to load the chair into the vehicle?

Terryw: close

Terryw: snow melt off

MikeG: I use my chair anytime I'm going to go over about 200 feet. I can walk into a store using my cane but if the store is big like Home Depot or Lowes - I use the chair.

LouLou: Having breaks whether it be an arm or leg sure makes life alot more challenging.

murf: I've got a Bruno lift. It's a curbsider

doughboy: Hopefuuly, Terry it won't trigger any mudslides!

Terryw: no mud in Yosemite, All solid granite

Bruce: How about the transfer system that you use, Mike?

Terryw: rock slides are possible

Terryw: and deadly\

doughboy: Oh, I never have been to your part of the world!

Bruce: Murray, I gather you can handle it by yourself without any help?

kelly: iLL take care of the granite terry ill start mining it lol

Terryw: Yosemite is inderedible

MICH entered the room.

Terryw: incredible

MikeG: I'v hot a Freedom Lift installed in the back of my Toyota van.

Bruce: Good Morning, Utah

doughboy: I'd like 2 c it sometime

murf: Ya no problem. Mike - I use mine for those big stores two

murf: too

Bruce: Can you handle it by yourself, Mike?

MICH: Oops, I thought it was last week and not this week

Terryw: I have not used my power chair in over 6 months

Terryw: My toyota with the lift is broken

murf: I have a toyota too good van for us

MikeG: Yes, I'm still pretty ambulatory - even without my cane - for short distances.

murf: Morning Mich

MICH: I use a power chair and Bruno lift in the back of an old 99 GMC Yukon

MikeG: That chair has made ALL the difference in the world for me!

MikeG: If it would just do stairs now...

murf: Me too Mike I wouldn't be working without mine.

doughboy: Has anyone here besides me have been told by their Neurologist that their chest pain(if you have it) is being caused by their cartilidge shriking away in the chest wall and rib areas?

Bruce: I am always amazed at the differences in capabilities among us KDrs. Age doesn't seem to be a factor in determining capabilities. Some have stronger legs, knees, arms, etc. than others. Some are more mobile. Some have more pain. The list goes on and on.

LouLou: I don't have a method to haul my scooter so I usually have a manual wheel chair in the trunk and with Mary Lou's pushing power am able to bet ariound most places.

Bruce: I haven't heard that one before, TJ.

kelly: yeah for sure bruce? yup

doughboy: We are all individuals and it certainly seems to affect everyone differently! I know my brother Bill has more trouble with his legs and with me it's more upper body trouble.

MikeG: Lou, you should get one of those scoters that disassemble into 4 parts. You could put it in the trunk like the manual chair.

kelly: yup my twin is differant from me with our kd sytoms etccc

doughboy: Yeah , I had 3 different Dr.'s in the last 2 weeks tell me that!

MikeG: MDA will get one for you like was stated above.

LouLou: Isn't it strange just how weak we are at times. Sometimes much worse than others.

Bruce: I suppose that is why it is so hard to doctors to state why we have some symptoms and not others or determine if the symptoms are KD related or because of something else happening in the body.

doughboy: Mine seems to come in spurts also!

murf: Sometimes it on the couch for the entire weekend to gain stregnth for another week

LouLou: Mike--They are still heavy for me and I hate for Mary Lou to be lifting thoes heavy batteries.

murf: strength

kelly: as for me FATIGUE IS BAD FOR ME always tired no energy at all?

doughboy: That's also why I couldn 't understand when SS sent me to their Dr. for a physical that they sent me to someone who didn't know what KD was.

MikeG: Yeah, it takes me about 3 times as long to do anything nowadays - most of that time is just spent resting to recove my strength...

kelly: yeah that suks doughboy

murf: Ron - you can get small lifts that fit in your trunk for that

Terryw: that is just wrong doughboy

doughboy: Been there 2 huh Kelly?

Bruce: I still have plenty of energy ...most days anyway, but I still have those days after I have over-done that I feel whipped.

kelly: yup

Terryw: Regular physicians know nothing of KD

LouLou: Thanks for the info Murf.

doughboy: Yeah I got my denial this week Terry

kelly: but iam educating the nerologist here in sask

Terryw: fight it

kelly: lol seriously

Michael17860 entered the room.

Bruce: Morning Mike

MikeG: I know, the batteries are the heaviest at about 35 pounds. That's a little over my limit too.

Terryw: If you need Dr. Fischbeck as a referral for them to contact let me know and I can give you his e-mail

Michael17860: good morning

Terryw: and phone

murf: Morning Mike

Terryw: they can contact him

murf: Ron - I'll send you a list of companies you can check out on the internet

Terryw: A letter from him will help tremendously

Bruce: Where is Paxinos, PA?

Terryw: Hi Michael

LouLou: Make sure of the phone numbers at NIH. They have changed alot since the new building 10 is open.

LouLou: Thanks Murf.

doughboy: I am, I thank all of you who have encouraged me to do this, you can ask Murf I have really been depressed about it, also I talked to Bruce about it because I needed someone to talk too and he just seemed to be the one, Thanks Bruce! And Murf your the BEST! Thanks Terry I would

Michael17860: Do you know where Bloomsburg is?

Bruce: The one good thing about KD, is that it doesn't effect the mind.

Terryw: So many in PA that have KD

MICH: Looks like you had a great discussion... I will try to catch you all in two weeks... have to Jazzy off to a water conservancy landscaping show to help my wife continue her aggressive out door planting

doughboy: Take care, Mitch!

Bruce: Anytime TJ

MICH has left the room.

Bruce: YUP ... Thanks Michael

murf: Ya anytime you know it

doughboy: Yeah I'm kinda of emotional at the moment

murf: Thats what friends are for

Terryw: Hang in there TJ

Michael17860: Paxinos is about 20 miles south from Bloomsburg.

murf: Ron you should have that .xls now

doughboy: Kinda feel like I want to give up!

LouLou: Michael 17860--I am Ron Wiker from Lancaster, PA.What is your e-mail address?

Terryw: I know, that comes and goes TJ

Terryw: I get it sometimes

Bruce: Remember, TJ, consider your application another business venture. Take the emotions out of it and you will have a better chance of thinking straight and convincing others of your need.

Michael17860: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

kelly: yes it sure does terry and tj

MikeG: Ted, did you use the form that Bruce put on the KDA web site?

MikeG: format

murf: I think depression hits us all at times. I know it hits me

Terryw: Hits me every week

Michael17860: Bruce do you still live in Lancaster.

kelly: yes me to at times

kelly: yup

Terryw: I have never taken anti-depressants

Bruce: No, Ron does. I retired and moved to northern Georgia about 2½ years ago.

Terryw: fight it with my mind

Terryw: music

Terryw: I listen to the song by REO speedwang - Keep pushin on

kelly: that,s the best method terry yup

Terryw: wagon

kelly: cool song terry

Terryw: Speedwang LOL

kelly: lol

kelly: 80;s music is awsome

Michael17860: Ron do you know where knoebel's in Elysburg is?

Bruce: Well, we are one big happy family aren't we. LOL But, seriously, we are there for each other when the need exists.

LouLou: We are lucky only to have KD. Tou know thqqt it could be Lou Gehrig's disease. See how lucky we are????

doughboy: I tried, my problem is that I did not know you could not be recieving a paycheck when you applied. My SS office said that if my co. was letting me be their out of sympathy until I got approved it was okay, BS, that's why I got denied. I don't know how long for an appeal, but I talked to a SSD lawyer and they said I had 2 quit my job. Fine, but how can I pay Bills until then?

LouLou: Not really sure mike.

Terryw: TJ, your state co has no Short term Disability?

doughboy: That's why this chat and KD site are so important to us, everyone!

Terryw: or long term

Bruce: TJ, as I recommended, you also need to make friends with your local SS representative. Mine became an advocate for me within minutes.

MikeG: Right ON!

Michael17860: Its a big amusement park

MikeG: I'm sorry that it happened to you that way. I guess I was lucky I was unemployed at the time I applied...

Bruce: TJ, the appeals process can move pretty quickly if you can show cause why the need exists.

doughboy: Yes, but when I went to work for the Highway Patrol you had to have a physical to get it when you applied, I couldn't pass it, however I have long term and it will cover my bills, but I have to be off work for 90 days without pay before it kicks in!

doughboy: I'll try Bruce, r you talking about the one at the local office or in Austin.

Terryw: TJ I guess I was lucky to have short term to cover that 90 days

doughboy: Yep

Michael17860: Ron if you want e-mail your phone # and maybe we can get together for lunch.

kelly: WELL GENTLEMAN,, GOT TO GO TAKE ALL UNTILL NEXT CHAT BYE ALL

doughboy: Where you goping Kelly

Bruce: Your local office is the best. That person needs to know you personally. She/he needs to understand your situation. You need to ask for his/her adice as to how to work the system with the constraints that you currently have.

Terryw: what about a small bank loan to get you through the 90 days

Bruce: Take care Kelly

kelly: MY BRO IS ON HIS WAY OVER

murf: I've got to run guys. Take care till next time. TJ call me and we'll do lunch next week.

kelly: THANKS MY FRIENDS BYE ALL

Terryw: SSD is retroactive

kelly has left the room.

Bruce: Take care Murray

LouLou: Thanks to Bruce my SS disibility was approved pretty quickly--in about 7 weeks-- and also got retro disibility when I signed up but didn't apply right away.

doughboy: I will do that Bruce, I'll set up an appointment

murf has left the room.

Bruce: Take care everyone. Stay healthy and happy.