Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

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Kennedy's Disease Chat Transcript
Topics: Open Forum

Chat Participants:

  • patrick
  • mikeg
  • kdfl
  • paulag
  • terryw
  • chuck
  • kdfl

Begin Chat

patrick -- {welcome patrick}

chuck -- {welcome chuck}

patrick -- It looks like I'm first for a change! This session is for open discussion. However, I'd like everyone to think about when you first learned of KD. What were your major learning steps in your search fork knowledge about KD: the major building blocks and their order. I'm

writing a book on KD and want to know if how I searched for information, in what path, and in how much detail is "normal", the same for most of you. Towards the end of the session I'll ask you to send it to me.

patrick -- Hi Chuck. It took me a bit of time to get that out.

mikeg -- {welcome mikeg}

mikeg -- Hello from Atlanta, GA

patrick -- Hi Mike. Chuck and Mike, where do you live, and which of your physical capabilities are most challenged?

kdfl -- {welcome kdfl}

mikeg -- Hi Patrick and Chuck. Lately my balance is getting to be the biggest problem. Stairs are always the BIG challenge and speaking for extended periods is also a problem.

chuck -- I live in Martinsburg, WV and my largest challenges at present are general physical weakness, my balance and I cannot walk but a short distance at a time.

patrick -- Chuck, when do you have the greatest challenge to your balance?

chuck -- Balance is a big problem for me anytime I am standing and I just can hardly bend over at all without holding firmly onto something to steady me. I use a cane for just getting around the house. Whenever I am out I use a wheelchair or my motor scooter. My fingers are also greatly affected. I have had to stop writing for the most part.

patrick -- Mike, ditto that for me. I use a walking stick (not a cane, longer and stouter) whenever get about on my feet. Helps my balance, and helps propel me uphill or up stairs like a ski pole.

mikeg -- Yes, I have some REI trekking poles that I used while in Texas following my brother in the Texas Water Safari. They are just like ski poles without the rubber circles at the bottom. They really do help me climbing up a steep bank.

patrick -- Mike, how strong are they laterally. My walking stick is oak, so if I fall, I can use it by putting it diagonally on a counter and the floor, and puch on it to help me get up. I tried that with an extendable aluminum trekking pole and it snapped.

patrick -- My fingers are getting stupid... ;-)

mikeg -- Patrick - No my poles are very light and retractable. They would never stand up to that pressure from the side. That would be good if they would though. That sounds like a good way to use it.

patrick -- I'm going to check around and see if something like that exists. A heavier walled aluminum pole shouldn't be too much heavier. If I have no luck, maybe we can find a manufacturer who will develop one. I know there is a marked out there for walking sticks-everyone wants mine. However, there is too much labor in making good wood ones.

kdfl -- My problems are about the same. I use a cane for short distances but use my scooter and wheelchair for any longer moving about.

kdfl -- I don't even try stairs anymore.

kdfl -- Hello from SUNNY Florida.

mikeg -- It hasn't been too sunny lately - has it?

kdfl -- No, it hasn't but it is still pretty nice.

patrick -- What part of Florida do you live in? I though some places in Fl

were getting nailed by T-storms.

kdfl -- We've had our share of rain lately just south of Tampa in Sun City Center.

patrick -- I live in northern Kansas and we've been getting hit almost every night for a couple of weeks. In the day it gets to be 90-100+ degrees F, then the thunderstorms come in the afternoon and night and cool things a bit. Then the next day it is hot and very humid. We've been getting high winds and hail, too. I had a nice maple about 30 or 40 feet hitch snap off about six or seven feet up.

terryw -- {welcome terryw}

terryw -- hi all

terryw -- feeling weak & tired today

terryw -- Have you all visited the KDA message forums ?

terryw -- I hope people start using them. if no one uses them I may remove them. I thought they would be a valuable too for the website.

patrick -- The message forums are a good place to discuss what works for each of us in terms of physical, medical, nutrition, social, and emotional needs. As an organization, the KDA cannot recommend any particular course of action, as we're not physicians, and we could open ourselves up to big

liability issues.

mikeg -- Terry - I must admit, I haven't yet, but I will after we finish the chat today. Been pretty busy playing caregiver lately.

paulag -- Caregiver?

mikeg -- Waiter

terryw -- Hi, has anyone tried MIRAPEX?

kdfl -- Terry, what is MIRAPEX and what is it supposed to do?

terryw -- MIRAPEX is a drug for MS. I found I could not take it.

terryw -- The doctor prescribed it for me for my twitching legs at night. it stopped the twitching but kept me awake all night. What a miserable night that was.

patrick -- This is not a recommendation for treatment, but just a bit of information you can discuss with your doctor. I take tizanidine HCL. It was developed for another illness, but my neurologist had me try it, and it has greatly helped reduce my twitching (fasciculation's), tremor, and muscle spasms from my Kennedy's Disease.

patrick -- It does not lessen or slow progression other symptoms, and if I do not take it, my twitching, etc. returns. The worst side-effect on me is that it makes me very sleepy, and it also gives me a dry mouth. This can be a plus if you want to sleep, and/or are bother with a lot of mucus.

patrick -- I'm supposed to take a tablet three times a day, but unless I want to sleep a lot in the day, I do not take it so much. If I do not have to drive anywhere in the morning, I'll take one when I arise, otherwise, I just take half a tablet in the morning and at noon. The tizanidine HCL

tablet is deeply scored four ways, so it is easy to break. I always take one full tablet at night before I go to bed.

kdfl -- I don't have twitching problems and no trouble sleeping.

paulag -- {welcome paulag}

patrick -- Howdy, Paul

mikeg -- Has anyone here tried oxandrolone?

patrick -- Mike, what is oxanmdrolone?

mikeg -- Mike Gill is taking it for strength and claims it is helping him.

terryw -- We have been busy busy mailing out cookbooks like mad. This

thing has really taken off. :)

butch -- {welcome butch}

terryw -- I sold 35 of them in 1 day at the place where I worked.

terryw -- The post office is starting to really like me. but the patrons don't. I bring in tons of cookbooks to mail and I hold up the whole line while they weigh each one LOL

terryw -- Butch, I bet Annette has her hands full now, I sent her 250 cookbooks to deliver.

terryw -- Annette has been a tremendous help with getting things really going for the KDA.

butch -- Terry--Annette has been delivering books and staying busy selling. Hope all of us can get behind this because it is a valuable tool to spread the word of KD.

terryw -- I hope so also.

terryw -- Hi Butch

patrick -- Howdy, Butch!



paulag -- {goodbye paulag}

terryw -- Butch,, Turn off the CAPS LOCK LOL. :)

paulag -- {goodbye paulag}

patrick -- Hey Butch, haven't those 'small jobs' gotten bigger with KD? :-)

butch -- Patrick--You are so right. It takers twice as long to do some of the simple things.

terryw -- I went fishing the other day and I could not even tie on a stupid fish hook. I was so frustrated.

mikeg -- I have the same problem with my fingers. Now my toes are getting weaker causing even more balance problems.

terryw -- its hard to balance on your heels.

patrick -- ****** I have a request for everyone that has a wheelchair or scooter, manual or powered. If the instruction book (if you got one) has a maintenance section, copy it and mail it to me, or scan it and email it to me. Also, please email me the mailing address of the company and I will write or call the manufacturers and ask them send a manual to you. I am

writing a booklet on wheel chair maintenance. I will ensure you all get a copy when finished. My mailing address is Patrick Griffin, 1804 Quivira Road, Washinton KS 66968 , email: This email address is being protected from spambots. You need JavaScript enabled to view it. ******

patrick -- Lordosis is when you stand upright and your spine takes on an exaggerated S curve, with your belly out and shoulders back. When one's calves, legs, and abs get weakened by KD, that is the posture often assumed when standing or walking in order to keep the body's center of gravity in a vertical line to keep balanced.

terryw -- that's good to know, I just thought I was getting fat LOL :)

patrick -- Unfortunately, this postural problem puts the weight on our heels, provides little capability to maintain balance, and puts added stress to our necks and backs.

patrick -- Back to fat in a sec. Did anyone notice how they waddle/walk when a bit tired. I get this feeling that I move just like a toddler, with my legs locked, my arms out for balance, and concentrating on stepping. Look at a little one and then look in the mirror. I have. What a hoot?

mikeg -- Yes, Patrick - I do the same thing when I walk.

patrick -- Mike, we ought to have a KD challenge race with a bunch of one-year-olds. Call the papers and bookies. We can get some publicity for KA and raise money too.

mikeg -- There are some specific hip exercises for strengthening the muscles that cause that waddle. I'll see if I can dig them up and email them to you.

terryw -- Mike, Will you mail them to us also to put on the site?

mikeg -- I have received several different exercises for strength and balance from the MDA clinic. I'll copy (or scan) them and send you them.

terryw -- Thanks Mike, then we will post them on (plug)

mikeg -- Terry - would you prefer them scanned or copied & mailed.

terryw -- Mike Either would work, If scanned make sure they are hi-res. Thanks

mikeg -- Ok

patrick -- Mike, I got some stretching exercises from my physical therapist. I can scan them also and share them, however theirs not anything special. About the same stretches I used to do when I ran a lot.

mikeg -- Speaking of fat... has anyone ever tried any of these fat burning drugs that are being advertised everywhere? I could stand to loose 10 or 15#s but it's not going to happen with exercise.

terryw -- Good question Mike. I was wondering the same thing.

patrick -- I've tried the fat burning drugs. As a rule, you have to exercise when you take them or they are useless. A bad side effect is they tend to raise your blood pressure, which can quickly worsen if you are relatively inactive.

terryw -- Mike, That's a good question for the message forum under nutrition or exercise.

mikeg -- Good idea, Terry. I'll post it in a minute.

butch -- Patrick It is hard to understand how we each have the same limitations but to some extent greater or lesser severity in each of us. Sometimes I have more problems than other. It seems to take a course of its own not necessarily if I'm tired or rested.

patrick -- All disease (and even all injuries) affect people in different ways and heal or progress differently.

terryw -- It took me forever to heal form my hernia operation 7 years ago

terryw -- they cut through my abdomen muscles.

patrick -- Normally, atrophy is the shrinking of a muscle due to disuse. However, in KD, the voids left by shrinking muscles is filled my fatty infiltration. A common effect in KD is a symptom called ypertrophied calves. This has happened to me. Very weak calves, but still big, not from muscle, and very flaccid. However, this effect is not noted on all muscles. For example, my quads and hamstrings have shrunk tremendously. No fatty infiltration to speak of. However, although I eat little, my stomach has grown. It seems to be an infiltration syndrome in the internal muscles of my abs. I do not have much fat if you pinch my skin, but I have a lot underneath.

patrick -- oops, hypertrophied

patrick -- In many neuromuscular disease, a trauma to the nervous system or nerve group (klike a virus or herniated disk) could cause KD symptoms to begin, make them more intense, cause them to be more one-sided, or cause them to progress more rapidly. In addition, diet, exercise, stretching, medication - they all affect humans in different ways due to our genetic and environmental difference. Thus they affect KD patients and their symptoms differently.

terryw -- Well people I have to go take my shower before the KDA meeting we are having in 30 minutes. Its been good chatting with you all. See ya in 2 weeks.

kdfl -- Goodbye all, see you next time around.

kdfl -- {goodbye kdfl}

butch -- I don't know how you all feel about exercising but I seem to do better when I am staying busy or moving about about. I am lucky to be able to go to work every day. That keeps me HAVING to keep moving just to get my job done. Also I have a job where I get to sit about half of the day. I still need to get into and out of my chair which is usually challenging.

mikeg -- Goodbye everyone. Until next time... take care.

mikeg -- {goodbye mikeg}

chuck -- Bye all - enjoyed.

chuck -- {goodbye chuck}

patrick -- For example, it was mentioned that one of our correspondents was diagnosed with prostate cancer, and it was popularly thought that we KDers were shielded from this form of cancer. The idea is that men with prostate Cancer tend to have high levels of androgen, and our reaction to it is compromised by our damaged androgen receptor gene. However, as with

KD, prostate cancer has many risk factors, some more important that others. Except for pure trauma (broken bone, etc.), almost all of us react differently to any set of risk factors.

butch -- Good bye Mike and Chuck. See you next chat.

patrick -- Butch, I agree. See you.

butch -- Patrick--See you next chat. Be safe.

patrick -- By Butch. Safe is no fun, the edge is more exciting, but I'm afraid my edge riding days are closing...

patrick -- *** Everyone who reads this transcript, PLEASE send me the steps you took to learn about KD. Just general stuff, from the "What is KD? to "How did I get it" to What causes it", etc., in whatever order you and/or your family asked yourselves the questions and tried to answer them. This email address is being protected from spambots. You need JavaScript enabled to view it. ***

patrick -- Is there anyone still on line?

patrick -- If not, I'll depart.

patrick -- Well, adios, amigos. Vaya con Dios.

patrick -- {goodbye patrick}

terryw -- {goodbye terryw}

End Chat