Kennedy's Disease Association

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"As a mother with a son who has KD, I appreciate those of you who are so dedicated to informing the public of this rare and difficult disease."

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Kennedy's Disease Chat Transcript  05-3-2008

Topic:  Special Guest - Angela Hokkinis BSN, RN,

Host: Murray Williams


BEGIN CHAT

 

Murf: Good morning Dart

Dart!: G'Morning to you - I hope that this iss a good one.

Murf: Me too 80 in Houston but storm clouds are looming

Murf: How do you feel?

NIHRN entered the room.

Murf: Hi Angela

Dart!: I don't even know what the temperature is here, but the sky is clear, so we will keep it!

NIHRN: Hi Everyone how are you all doing.

Murf: Only two of us so far ... still 5 minutes early

NIHRN: Yep I wanted to make sure that I could get in ok.

Dart!: I feel just fine, thanks, and wish that for All!

Murf: I'll introduce you at 9:30 CST

NIHRN: Glad to hear that you feel so good, sounds good Murf

Murf: Dart - You have private time with Angela

Murf: 1 on 1

Dart!: Thanks loads, but I'm shy!

NIHRN: As Murph can vouch for me, at least I think so, there is no reason to be shy with me!

USPatriot entered the room.

Dart!: 80 degrees there - maybe 35 here!

Murf: Angela is the nurse that handles out visits

NIHRN: That would be me.

Murf: US Patriot - I love you!!!!!!!!!!!

Murf: Our visits

USPatriot: Me too!

Dart!: There is no shocking of a nurse, I'm told!

NIHRN: Glad to hear that guys I always look forward to seeing you.  It is great to always want to go in to work!

Murf: We need more of you!!

NIHRN: You are so correct Dart!

USPatriot: Wish I could work

NIHRN: Fire away Dart and co. because I am all yours!

Dart!: So true - it is always good to have a nurse about!

Murf: Don't be shy ... we were all there (where you are) once

NIHRN: Thanks

USPatriot: Is NIHRN Angela?

Murf: and no one can see you blush

NIHRN: Also remember Dart I don't really know who you are.

Murf: Yes

NIHRN: Yes it is US Patriot

Murf: But she knows me

USPatriot: Thanks - This is TJ

Murf: not again!

NIHRN: Hey TJ how the heck are you?  I get updates from our mutual friend!

NIHRN: I was wondering how you have been doing since the Vegas Convention

Murf: How may names do you have. Or should I say how many people are in there?

USPatriot: What are we discussing today?  I bet you do. I'm okay just having trouble breathing and mu Pulmanologist says they can't help me anymore

NIHRN: What do you mean Murf

Murf: :-)

Murf: TJ

Murf: He has loged in Mountain Man and 3 or 4 other names

USPatriot: I think I need an oxygen tank NIHRN

Gary_KS entered the room.

Gary_KS: Good morning. I am Gary Uchiyama joining from Kansas City. It is a nice sunny day this morning.

Murf: It's ok to keep us on our toes I guess

NIHRN: I am sorry to hear that TJ, is it from KD or something else?

Murf: Hey Gary

Gopher entered the room.

NIHRN: Hi Gary

USPatriot: Yeah but when they don't work I re-login under a different name!  They say KD

Murf: Hi Gopher

Gopher: Hi All

Murf: We are very happy to have Angela Kokkinis as our guest on the KDA chat today.

Murf: Angela received a Bachelor’s of Science degree in nursing from West Virginia University. She worked previously in NIH for 15 and 10 years in the outpatient clinics. The last two years Angela has been the focal point for the Dutasteride trial study and a very good friend. Please welcome Angela Kokkinis

USPatriot: The Dr. said my lungs are operating at 50% according to the last breathing test.

NIHRN: Hi Gopher, so US Patriot, why don't you get the oxygen tanks and use your energy in other ways.

USPatriot: I asked but have not recieced yet.

Chuck entered the room.

NIHRN: Thanks Murf for the great introduction I feel you are also my good friends

USPatriot: received

SammyD entered the room.

Murf: Angela: we've been trying to get him to diet but he did quit smoking

NIHRN: I see US Patriot well I am glad that you asked for one

SammyD: morning folks

USPatriot: Besides Angela, I don't hardley have any energy

NIHRN: That will help, defintly stop smoking, losing weight and maybe there are some diaphragm exercises to help out

Murf: Hi all We have angela on this morning

NIHRN: Morning Sammy D.  You won't have energy if you are not getting enough oxygen.

Dart!: A very warm welcome to all Angelas - and everyone else. Perhaps there are some answers today?

Murf: He has access to my pool any time he wants

USPatriot: How do you have the energy to lose weight especially with all the stress?

NIHRN: US Patriot you have got to take care of yourself

USPatriot: And yes, Murf has a great pool!

Murf: where have I heard that before?

NIHRN: I am assuming you mean about the trial

Murf: Take care thing

USPatriot: Well, ask Murf. sometimes I don't care anymore and want to give up!

Murf: not until 2012!!

NIHRN: You know Murf and any one else in the trial I am all about you all taking care of yourself, US Patriot I don't like that talk

USPatriot: yep

Murf: Do I have to come up there todfay?

NIHRN: Are you on anti-depressant and seeing a therapist

USPatriot: Well I at that point

Gopher: is the end of the trial 2012

NIHRN: No the end of the trial is in Dec. 2008

USPatriot: Yes to both and she says I'm like a time bomb waiting to go off

Murf: I'm a therapist with a different approach

NIHRN: US Patriot I am glad you are seeing both, Murf can be a good one but you need to talk to someone outside of friends and family.  It really makes a difference, I know!

SammyD: Where happens after Dec 2008 vis a vis the clinical trial?

USPatriot: I'm on Cymbalta. Talking won't help me

SammyD: ooops...what happens,...typslexic

Murf: Gopher: no 2012 is the end of the Mayan calendar

Gopher: try meditation, pray and some good reading...it helped us

NIHRN: After Dec. we will be working the data and getting results out to everyone hopefully by March-April but don't hold me to that.  It may take up to 6 months.  We will notify everyone of what they were on.

USPatriot: I pray alot

Gopher: 2012 I get it now

Murf: I'm on cymbalta too but you need to be getting the right amount

NIHRN: Talking does help you may not think it does it makes a difference to really get it out

Gopher: Our terapist says are you listening or just talking in your prayer

Murf: good point

USPatriot: I do both, but I'm really depressed and really don't care anymore!

NIHRN: Correct Murph and Gopher, also Patriot you may need to change anti depressant.  Maybe this one is not working for you anymore

NIHRN: US Patriot I know how you feel, believe me but you can not give up too many people need you, what would Murf do without you.

USPatriot: No, Murf knows my problems they are deeper than KD

USPatriot: Murf would save money!

Murf: You need to call me

SammyD: NIHRN is there any interim report (web link etc) on the clinical trial? I know little about it. Diagnosed Sept 2005 in Toronto. Kinda new to this current life adventure.

NIHRN: Well that is why you need to go to an outside person too along with talking to Murf.  Ti is

Murf: That is crap and you know it!!!!!!!!!

Murf: it's not about money my friend

USPatriot: I know

Murf: then call me

Murf: Angel  - Sammy had a question

USPatriot: Gun show tomorrow at George R Brown

Gopher: any interim report on trials yet?

NIHRN: The interim report has not come out yet but we so far we have not been able to tell strongly one way or the other if the drug has been helping.  We do know that it is not hurting you guys.

Murf: ok you come down and we'll go

NIHRN: Sorry it took so long to answer that Sammy D

SammyD: pas de probleme

USPatriot: Come Angela, surely you know more than that

NIHRN: Yep we wish we could have been able say stop the study we have seen awesome benefits but it is not that clear cut

NIHRN has left the room.

Murf: oops

USPatriot: Have you seen any progress in KD'ers

NIHRN entered the room.

Murf: Your back

NIHRN: Sorry guys I got knocke out for some reason

Murf: wehat happed?

Gopher: Any other ideas about what to try next?

NIHRN: US Patriot you need to be with Murf today

NIHRN: We are looking at a possible exercise trial, and growth factors but nothing clear cut yet

NIHRN: We still need to do more mouse studies but somethings are coming along

USPatriot: I'm all right, thanks, just venting!

Gopher: Yea! Exercise

NIHRN: At the conference we saw some really promisting things

SammyD: Where is the trial run out? ...

NIHRN: I know I am excited about the exercise one too because it has never been done in KD patients

NIHRN: I am glad you can vent Patriot that is what this is all about, anytime you need me get my number from Murf,  Call me!

USPatriot: Exercise is good if you can do it

Gopher: Believer...it will help

NIHRN: The trial is over in Dec. 2008, and exercise is good in moderation and slowly building yourself up

USPatriot: Thanks , your too good!

NIHRN: You can do exercises in your chair just do the resistant stuff and before you know it you will work your way up to bands and so on

NIHRN: I don't think you can ever not exercise

NIHRN: Thanks Patriot I appreciate that too!

Murf: we have an exercise schedule on our web site

Gopher: And it is a great one!

SammyD: Is the medical team organized on possible exercise trial? My neurologist in Toronto has some interest in this (focus has been with ALS to this point). Where's the exercise trial group out of? e-mail contact?

NIHRN: Great, I will look at it and ask our physical therapist to look at it too if you want

Murf: Light exercise you can do in a chair

USPatriot: That would be good

Murf: Sure but I think Nick & Joe went through it before we put it up

NIHRN: Sammy, we are not organized yet at NIH, we are the only ones right now that are talking exercise that I know of, off the top of my head.  ALS is the only published article out there.  That is good to know Sammy that your doctor is interested.

NIHRN: Great Murf, I should have known you are so organized,

Chuck: Agree with USPatriot - NIHRN is an angel watching over ALL of us that are in the trial.  The is the Rannells family.

jameson411 entered the room.

Murf: not really but I'm a good impersonater

jameson411: good moring all

Murf: :-)

Murf: Hey James

NIHRN: Hi Rannells family thanks for the kind words!  How are you all doing? I will call you on Monday

USPatriot: Hi Jameson

jameson411: hello Patriot

jameson411: where you from?

NIHRN: Hi Jameson, and Murph you are no impersantor

USPatriot: I'm TJ

jameson411: I am a Patriot fan... New England Patriots!  :-)

jameson411: good to meet you TJ

NIHRN: There may be a group in China that is looking at exericse too but I am not totally sure

USPatriot: I'm from Houston

Murf: thanks

billeric entered the room.

Murf: Hey Bill

NIHRN: Anytime Murf, what you see is what you get with you Murf that is what I love

NIHRN: Hi Bill

billeric: Hi guys

Murf: Ask TJ

SammyD: NIHRN - Do you have an e-mail contact or some way to get in touch @ NIH? Can pass along to my neurologist in Toronto so he could monitor, possibly get involved etc

Murf: some times its more than you want

NIHRN: Let me ask you all a question, have any of you had any bone density testing done or do you have a tendency to break for fracture bones easily?

Murf: Angela!!!!!

NIHRN: Sure do Sammy, This email address is being protected from spambots. You need JavaScript enabled to view it., my phone number is (301) 451-8146.  Call anytime

NIHRN: Murf, you know I am curious I know your history

Gopher: Good Question, Angela!

Chuck: Angela, Charlie has never had a bone density test and so far has never broken anything in his many falls.....

Murf: I know

USPatriot: Murf broke his foot again at Christmas

NIHRN: In the course of the trial we have seen several people with broken toes, feet, hips,etc.  Thanks Gopher

Gopher: No have not had bone density

billeric: I have had bone density test done.  Came out o.k. but have still broken an ankle bone and a leg bone.

NIHRN: Thanks Chuck

NIHRN: Thanks Bill good to know.

SammyD: Broke ankle in 2006 after Sept 2005 diagnosis. Pins & screws now and so I declare myself at airports...

NIHRN: As you should SammyD

Murf: Looks like we break lots of bones

USPatriot: Not me

Murf: Take note TJ

NIHRN: Just be careful guys, remember to wear tred socks at home, shoes at all time and watch those uneven surfaces.  See why I asked the question Murf

Murf: yup

NIHRN: Chuck is a lucky one, as you can see Mrs. Chuck

Murf: an rightly so

Murf: and

billeric: I am not sure if I trip or if my leg suddenly gives out.

NIHRN: Yep I just want to keep all you guys safe and out of the hospital!

USPatriot: You better chain Murray down then!

NIHRN: Also do you notice any depression, TJ I know we just talked about it but you really are not alone?

Murf: I usually go straight down on top of my leg - foot etc

NIHRN: Do you think I can honestly chain Murf down

USPatriot: Yep

USPatriot: Nurses can do anything

NIHRN: Yep to knowing you are not alone or yep to thinking I can chain Murf down

Chuck: Charlie feels his leg suddenly gives away.  He can be standing still and suddenly is on the ground and as you know once down he can't get up.

USPatriot: Both

Murf: no chains please --- whips ... may be

Murf: :-)

billeric: I think thats what happens to me Murf

NIHRN: I wish I could do anything that would be a great superpower, watch it Murf, ha ha

SammyD: NIHRN - Is there a hypothesis on KD and bone density? Worth mentioning to my Dr? Prescribed pretty much every other test...why not this one?!

Murf: Usually its my knee that starts it

NIHRN: So how about you Chuck, Billeric, Sammy D, any depression or anyone in your family have depression?

USPatriot: Hey Murray, I got a new magizine yesterdat that had a pwer chair in it that stands you 100% straight up no standing by yourself!

Murf: Depression here too and thats why I have a sick sence of humor

billeric: I guess I can say no more depression than anybody else.

NIHRN: You don't have to answer I am just curious because I do see guys that are depressed and I am not saying that there is anything wrong with that but it could be another aspect of Kennedy's disease or something totally different, I know Murf but once again that is why I love ya

jameson411: Lack of activity will cause bone density loss, so isn't it obvious that KD suffers will enventually get weaker bones.

NIHRN: Ok thanks billeric, i appreciate your honesty.

Murf: Saw it and it a ton of$

Chuck: Think we all have to some degree and it is a constant battle to try to overcome even along with anti depression meds

NIHRN: You are correct jameson411

Murf: Wives / others are a great help

NIHRN: Chuck I agree anti depressant aren't the end all be all I feel you need to have a good support system too, like you do!

Murf: Hunor and above all ... STAY BUSY

USPatriot: I'm thinling we get depressed because for me my whole life has changed, can't work, enjoy my sports anymore like golfing,hun ting & fishing, just sit on the porch and smoke

Murf: Humor

NIHRN: Murf that always works, do things that keep you happy, now Spring is here so I will be happier just seeing the sun more

jameson411: I agree TJ

Murf: or sitting on the porch

Murf: period

kellyC_ entered the room.

jameson411: I can't imagine there is a chemical reason for depression

NIHRN: Patirot, yep I agree it is like grieving, loss of what you were before, it is normal and understandable

SammyD: Is difficult not get down at times when you go from running, baseball, cycling etc, to periodically falling on your face...however my own perspective is that it could be worse....sense of  humour and Monty Python reruns help I find...

Murf: Hey Kelly

kellyC_: Hi murf

jameson411: not being able to do what we did do just a year ago is frustrating

kellyC_: hi murf

NIHRN: There can be a chemical reason for depression in general but I don't know about it with KD.  With Parkinson

USPatriot: Sure is Jameson

jameson411: well put NIH

NIHRN: Thanks jameson

kellyC_: Hello Anjela K... how are you?

Murf: I've been a little depressed lately because my boss wants me "in the office or on disability"

NIHRN: With Parkinson's patients the lack of L-dopa in the brain causes depression and that can be their first symptom before tremors or anything else

SammyD: ...Agree with Murf - family is a big help

NIHRN: hey Kelly how the heck have you been, good to hear from you

jameson411: I found chess :-)

Murf: The I got mad because there are laws in this country against that

jameson411: keeps my mind active and i can compete with many others

USPatriot: Well it's not just not doing what I used too but there is also a financial penalty when you go on disability, it does not pay much!

kellyC_: I had a rough nite with throats spasma and my legs but ok ty anjela

Chuck: Sometimes one feels the longer you have battled, the harder it becomes and the more depressed one can get.  I have been fighting since 1991 - grateful but tired.

NIHRN: I hear all of you and you are right so correct in the way  you all feel

USPatriot: Right on Chuck

Gopher: Throat spasms, me too

Murf: TJ needs to get into online gaming too ... chess or shooting things

NIHRN: It is hard to go from a great job with great pay to not working and getting less pay

USPatriot: Shooting things would be good

NIHRN: Chuck I know it has been a long battle but just hang in there, too many people love you including me!!! I need to get more hugs in!

kellyC_: yeah gopher there scary.... i just try and relax when they happen!

NIHRN: Sorry to hear about the throat spasms KC

NIHRN: I know someone told me that drinking cold water helps his

kellyC_: ty NIHRN

jameson411: Is a throat spasm different from a throat cramp?

Dart!: Do any of you folks have an answer to cramping hands and fingers that have problems finding the correct keys?

kellyC_: really

jameson411: I get those in bed when I am reading and I yawn

Murf: No one can force you and thats what I love about this country ... we need to defend that right!!!!!!!!!!!!!!!!!!!!

Gopher: any ideas on how to take capsules? It's a mind thing..but they get caught in my throat

Murf: Warm water helps with my cramping

Gopher: Heating pad helps with cramping also

NIHRN: Cramp is longer lasting and consitstent in pain, where a spasm can hurt consitently but can lessen and increase in the same amt. of time, does that make sense jameson411

kellyC_: I have alot of Sporadic Ataxia in my hands and fingers to???

SammyD: I find massage thereapy good for hand/ arm cramping...

NIHRN: Capsules in applesauce, yogurts, that what we used to do for our patients on the inpatient unit that could not swallow pills easily

jameson411: ys

jameson411: Should I go to physical therapy?

NIHRN: Cramping of the hands and fingers is tough but heat, massage, like the guys said seem to help al lot of our patients.

jameson411: If so, what questions do I ask the therapist when deciding where to go

NIHRN: Jameson411 physical therapy is always good for you all

jameson411: ok, so how do i choose one?

Dart!: Thanks for the suggestions regarding hand cramping!

Murf: James - your physical therapist needs to know of your KD ... do not work until it hurts

NIHRN: Also if you go to an ocupational therapist they can give you assitive devices to help with your needs

jameson411: right

Gopher: got to go, thanks. everyone have a great day

Gopher has left the room.

NIHRN: I would talk with your doctor or neurologist to see who they would recommend

jameson411: Right, I need someone who won't push me to muscle failure... I'll be done for the week

Murf: You have a boat load of helpfull hints and devices

Murf: I'd be just DONE

jameson411: Neither of them are particularly knowledgable about KD

NIHRN: Yep Murfy good reminder, do not overdo that would be bad for your muscles

Murf: give them the stuff on the webpage

NIHRN: Do you have a Muscular Dystrophy clinic in your area, Jameson411

jameson411: An hour away, yes

kellyC_: its nice tohave you in the KD chat NIHRN.... you were so nice when i met you @NIH

NIHRN: They may be sort of familiar with KD and they could recommend someone who would at least know about muscle wasting disorders

Murf: They are also a great source of help $ & support

NIHRN: Same here Kelly C it was gereat meeting you too and thanks Murf you all are so great and too kind

USPatriot: Angela, Thanks for being here today and hope we see you soon.  Time for me to go and take a small nap.  See you guys later!

jameson411: by TJ

NIHRN: Patriot, call me anytime you need me

Murf: CHairs $2000 every 5 yrs and $500 a yr for repairs

Murf: MDA

Chuck: Amen Murf to MDA.  They are most helful and supportive.

USPatriot has left the room.

kellyC_: //1

NIHRN: Glad to hear that Chuck I have also heard nothing but good things about them

Dart!: Is there actually something that can be done about muscle-wasting?

NIHRN: I miss seeing you Kelly C how is everything else going?

kellyC_: good NIHRN.... so far

NIHRN: Dart! not that I am aware of but there are some good theories out there but nothing concrete yet

NIHRN: Great kellyC glad to hear it

kellyC_: just lotsa throat and leg cramps etc..... and fatigue as well But hanging in there Anjela

kellyC_: ty

NIHRN: Can you get Quinine in Canada

NIHRN: That would help with the cramping

NIHRN: Also a patient swears by Johnson and Johnson muscle rub

NIHRN: Sorry I don't know the exact name

kellyC_: yes i can

kellyC_: quinine ill try it NIHRN

NIHRN: I know some of the guys here swore by it some it did not help but it is definetly worth a shot

kellyC_: i know the drug ty

Chuck: I feel when cramping stops, deterioation worsens...at least that is what happened to me.

NIHRN: Good ask your doctor if you could try some, good point chuck

Murf: Just think Kelly ... you'll never get Malyaria

kellyC_: lol

kellyC_: yeah for sure Murf lol

NIHRN: Right backat you and all the guys

Murf: All the bugs in Canada

Murf: LOL

kellyC_: Hey is there any long termm effects on the drig Quinine ???

kellyC_: when taking it NIHRN?

NIHRN: Also if any of you all have any questions at anytime please don't hesitate to call or email me, (301) 451-8146 or This email address is being protected from spambots. You need JavaScript enabled to view it., if I don't know the answer I will try to find out

Murf: your spelling gets worse

Dart!: Thanks for the ideas about cramping. So far I am not on any drugs, and fear rhat they would have serious side effects."Better the devil that you know than the one that yeou don't know!"

NIHRN: I am not sure Kelly C, you should ask your pharmacist they are the experts!

kellyC_: ok ty NIHRN

NIHRN: Dart! I hear you try other things first if you want to, nothing wrong with that that is for sure

Chuck: Must leave.  Thanks to all the guys and to NIHRN.....

Murf: Dart don't wait too long ... I think I waited too long with the pain medication Ultram ER

Chuck has left the room.

Murf: CYA chuck

NIHRN: That is a good point Murf

NIHRN: Bye Chuck!

jameson411: bye all

jameson411 has left the room.

NIHRN: Bye Jameson411

Murf: these guys are quick

SammyD: Thanks for some good ideas. Keep well all. Ciao

NIHRN: I know Murf

kellyC_: Well I have to go to everyone god bless you anjela!.. it was good to hear from you!

NIHRN: Bye Sammy D

NIHRN: Bye kellyc

SammyD has left the room.

kellyC_ has left the room.

Murf: CYA Sammy & Kelly

Murf: dam

NIHRN: Any other questions guys or gals

Murf: now is the time to ask but you can always e-mail me with any questions

Dart!: I'll say my "take cares" while there is still some folks here, and thanks, too!

NIHRN: Same here guys

Murf: I will forward to NIH

billeric: I am sorry I missed first part.  Was there any news on the trials?

Gary_KS: NIHRN, thanks lots! Bye

NIHRN: Just that it is continuing on

Murf: CYA Gary

NIHRN: Bye Gary KS

NIHRN: We have not seen one way or the other strongly if Dutasteride is working or hurting so we are continuing until DEC 2008

billeric: Thats good news

Gary_KS has left the room.

NIHRN: It is good news at least there is some promise

NIHRN: Hopefully

Murf: I finish in June still ... don't I?

NIHRN: Yep you sure do

billeric: And we aren't giving up!

Murf: Good!

NIHRN: You better not!!  I won't let you

Murf: No more flights

NIHRN: Thank you all for answering my questions too, I love chatting with you guys

NIHRN: No more flights or taxi cabs, Murf

Murf: I never give up and I'll send you a poster of the Frod and Stork if you haven't seen it befor

billeric: Thanks for all you do for the KDers NIHRN

Murf: Here Here

NIHRN: Thanks billeric I appreciate that and no Murf I have not seen it before

NIHRN: Yep we can do a cheer over the chat

Murf: I'll send it in a minute

NIHRN: Ok, sounds good

billeric: Bye folks till next time.

NIHRN: Good chatting with you Billeric

billeric has left the room.

Murf: I'm going to save CYA Bill

Dart!: A good 'chat', Angela and All. Be good, and well!

Murf: and Dart

NIHRN: You too Dart! call me or email me anytime

END CHAT