Kennedy's Disease Association

Susannew 
Chuck 
Billerickson 
Bob 
Jean-s 
Mgoynes

Begin Chat

chuck -- {welcome chuck}
susannew -- {welcome susannew}
susannew -- Hello Chuck!
chuck -- Good morning Susannew.Glad to have you back...
susannew -- glad to be back
susannew -- This is unusual, usually we have a few people here before 8:00 a.m.
susannew -- I mean 7:30 a.m.
susannew -- This is a very important topic. One I would think others would
find interesting.
susannew -- Did you have trouble getting in? I was having trouble from the KDA web site. I think Geocities Server might be having a problem, so I came in directly through www.MDAusa.org
chuck -- I only tried my usual twice and got in the second time..
susannew -- That's good to hear.
susannew -- How are you and Charles?
chuck -- We are doing good once again. Charlie's face is even back to normal which is great.
susannew -- I'm glad to hear he's healing well.
susannew -- Its 7:30, so lets begin to talk a bit about medications,
medical aids, etc. that Charles uses to help with SBMA. He takes testosterone shots, right?
billerickson -- {welcome billerickson}
susannew -- Good morning Bill.
billerickson -- Good Morning,Susanne
chuck -- Yes, Charlie has taken testosterone shots weekly for 5-6 years. We are going to John Hopkins this Mon. so he is going to ask Dr. if/where is there a full report on protocol and if so could we get. Should this work out, we will certainly let you all know. Charlie does feel it has helped him remain as mobile as he is as does his local MD.
susannew -- Chuck: Charlie feels its made him stronger or slowed the SBMA
progression?
susannew -- Chuck: How much testosterone per shot and how often does he take it? How much does he weigh and may I ask, if you would share, his age?
chuck -- He feels it has slowed the muscle weakening process. That is all it is intended to do. They prescribed 1.1ml/wkly by injection and he weighs 150 lbs. at present and he is 73 years of age. We are also going to check with JH about starting to use the gel or patches. I (wife) am having a hard time injecting due to muscle loss. At this point, I am only injecting in buttocks and hips. I just had to give up injections in the legs due to muscle loss.

susannew -- Chuck: If you do find out anything in regards to studies, would you please send me the information. We'd like to post it to the web site.
chuck -- Charlie tried neurontin for approx. 2-3 years and Dr. Rothstein & local MD decided they didn't feel he was getting enough results to warrant taking. Yes, we will definitely let you know Susanne if we can come up with formal results of protocol. Charlie too is experiencing quite a bit of leg pain. Charlie does not walk much at all so he doesn't feel the walking would increase leg pain (his opinion)
susannew -- Chuck: Thank you for the leg pain info. I'm not sure why some with SBMA have leg pain while others do not.
susannew -- Bill: do you have any information to share in regards to medical aids, prescription drugs, etc. that you use or take to help with SBMA?
billerickson -- My doctor recommended Neurontin capsules. He indicated they
would help with pain associated with Kennedy's.
susannew -- Bill: You have pain? What kind of pain, where? Have you tried
other pain killers. Neurontin is a prescription or over-the-counter drug?
billerickson -- I have some leg pain. I am not sure the Neurontin works
but I have been faithful in taking it. It is a prescription medication.
susannew -- Terry has pain in his legs. We believe its the tendons since their taking more responsibility to hold him up as the muscles waste. He took Vicodin, but it does the exact opposite that it does to others (which is relax them), it wired him up terribly. So he's now on 50 milligrams of Ultram. He takes one pill in the morning and it works real well on his
legs and muscles for about 6-8 hours. Vicodin did not work at all. He sometimes takes a second Ultram Pill, but tries not to too close to bed time because it also wires him up and he cannot get to sleep. Good to take if you want to stay up all night to cram for a test!
bob -- {welcome bob}
susannew -- Bill: Ultram might be something to ask your doctor if you can try. Terry limits the use of the pill also because his father passed away from liver disease and Ultram can affect the liver if too much is taken. So Terry is supersensitive to this.
billerickson -- Yes I will pass this on to my Neurologist I will have a new one as mine retired) By the way my regular doctor recommended testosterone patches to prevent bone loss. As you know falling is the worst thing that happens to us. I have used them but am not currently. I take Tylenol for the pain but that's all for Kennedy's.
susannew -- Hello Bob!
susannew -- Bob: Do you take any prescription drug or use any medical aids to help you with SBMA?
bob -- Hi every one
susannew -- Chuck, Bill, Bob: Do you take anything else to help with SBMA?
bob -- Yes I take drugs to help relieve the cramp
susannew -- Bill: Do you still walk a lot? I sometimes wonder if the pain Terry is experiencing is because he "overuses" his leg muscles.
susannew -- Bob: What do you take? What dosage and when?
bob -- these are Baclofen an MS drug and Tegretol a drug used to help relieve epilepsy - but both are muscle relaxants
susannew -- Bob: Do you know how many milligrams of Tegretol and Baclofen
you take a day and how often?
bob -- Hang on will check on dosage
bob -- Baclofen 5mg 4 times a day but I can increase this on demand to 6
times a day
bob -- Tegretol 100 mg 4 times a day
susannew -- Bob: Does the Tegretol and Baclofen work for you?
bob -- Yes it relieves most of the cramp most of time but not the pain
susannew -- Bob: You have pain also? Where is your pain?
bob -- I refrain from taking too many pain killers since I feel I may do more damage
bob -- My pain is in the legs calf and thigh muscles
susannew -- Terry hardly gets cramps anymore. He used to all the time. It seems that cramps may be a stage that those with SBMA go through.
susannew -- Bob: May I ask how old you are and how much you weigh?
susannew -- Bill: Same question.
susannew -- Terry is 39 and weighs 165, 6'0".
susannew -- Chuck, Bill, Bob, how tall are you?
chuck -- Charlie is 6 ft. tall.
bob -- I am 50 and weigh 160lbs & I am 5ft 8 in
billerickson -- I still walk but not like I used to. I am 66 yrs old and
weigh 180 lbs. 10 Lbs. too much!
mgoynes -- {welcome mgoynes}
mgoynes -- Greetings from Atlanta, GA
susannew -- Hello Mike: Do you take any prescription drugs or use any
medical aids to help with SBMA?
mgoynes -- I took Mestonin for about a week - wouldn't suggest it though.
susannew -- Mike: What was the Mestonin for? Why wouldn't you recommend?
mgoynes -- It increases the electrical impulses that the brain sends to the muscle. The side effect are those HORRIBLE twitches.
susannew -- Mike: The twitching was more troublesome than it was worth?
mgoynes -- Yes, it was those bad facial twitches where your whole face is in constant motion. I went through that at the onset of the disease and I
do not want that repeated again.
susannew -- Mike: Can see why you would stop the Mestonin!
susannew -- Terry said Asprin also helped him with the pain. But there's nothing like Ultram to take 80-90% of the pain away.
susannew -- Mike: Thank you for sharing. Do you know what the dosage was when you took Mestonin?
mgoynes -- My neurologist wanted me on 3 60mg per day. After the 2nd day I went
to 1/2 a tablet 3 times a day. Then only 1/2 tablet per day. The off of it completely.
jean-s -- Mike : I take Mestonin many years ago, without really success.
Do you think it is efficiency for you ?
susannew -- Jean, why did you stop taking Mestonin? Because of a side
affect or because it just didn't do much for you?
jean-s -- Susanne and Mike : I stop Mestonin because I find it did not seem make better, but that was at the beginning of my disease, and may be
now it will be useful to try again ?
mgoynes -- jean-s: Did you notice an increase of strength when you took Mestonin.
jean-s -- Mike : No, I didn't remember.
susannew -- Very hot water is another way Terry alleviates the pain. He'll sit in the Jacuzzi at 103 degrees or take hot showers/baths.
jean-s -- {welcome jean-s}
susannew -- Welcome Jean: Do you take any prescription drugs or use any medical aids to help with SBMA?
jean-s -- Hello everybody, it's Jean from France. The alone medication I
take is Testosterone on time each 2 weeks.
susannew -- Jean: How much testosterone do you take and how often? How much do you weigh, your height and your age? Do you feel its working for you?
susannew -- Everyone: Do you have frequent cramps still?
billerickson -- Susanne, was wondering if any body has foot pain. Mine sure give me grief when I walk any distance.
susannew -- Terry has pain in his heels, he believes because he walks on his heels and from coldness. His feet are always cold.
jean-s -- Susanne : I have also heavy pain with my heels I think for the
same reasons than Terry.
billerickson -- Mine are always cold too but the pain while walking is
more in the arch.
chuck -- My leg cramps has all but ceased and has turned into only calf leg pain. Cold feet a problem here too. My fingers doesn't work too well
anytime and during winter they hardly move at all.
susannew -- Cold really seems to affect those with SBMA. It "freezes" the muscles! Terry explains it as, your in party and you reach into the bottom of a cooler for a can of (you name it) and plunging your hand into the ice cold water for a while affect the movement of your fingers.
bob -- Susan which muscles did Terry get most cramp in?
susannew -- Terry did get cramps in the calves, hands, feet, forearms,
stomach, jaw and neck.
susannew -- He still gets frequently the jaw cramps when he yawns.
bob -- Susan thanks
mgoynes -- I have really bad heel pain also unless I wear very good arch supports.
jean-s -- Mike : what is arch support ? is that is something you put in your shoes ?
mgoynes -- jean-s: Yes it is an insert that I wear if the shoe does not
have a good arch support built in.
jean-s -- Mike : can you give me the reference of that product may be a website address ?
mgoynes -- jean-s: Dr. Scholls and Oakton make a good support. I get them at a local drug store but I'm sure you could find them on the web...
jean-s -- Mike : thank you, I know Scholls, I can ask them complementary information
jean-s -- Mike : about shoes, I find a very good US model of shoes named Dexter, do you know them ?
mgoynes -- bob: Yes I like them also. I like French shriners and any soft sole shoe too. I do have a problem with wear though. I wear the heel down really fast.
susannew -- I have a pair of Dexters! Very comfortable!!!
jean-s -- Susanne : I use only Dexters shoes since many years, but unfortunately they are very difficult to find in France.
susannew -- Are there any other medications that you take for SBMA?
bob -- sorry I have just remembered another drug I take before bedtimes - its called
Gaviscon - it alleviates some of the throat spasms we all seem to suffer from
susannew -- Bob: What is the dosage of Gaviscon? Does it work for you? It does seem that most of Terry's choking problems are when he's sleeping or has a cold.
bob -- will find out the dosage of Gaviscon
bob -- it has helped me
mgoynes -- bob: Do you notice any side affects of Gaviscon?
bob -- I take 10 ml of Gaviscon before bed - I have not noticed any side
affects whatsoever
mgoynes -- bob: Thanks - that is some really good news. I learn something
new every time I attend this chat!
bob -- Mgoynes do try it
mgoynes -- bob: I will!
susannew -- Everyone: Are there other medical aids that you use?
billerickson -- I don't use anything other than a cane when I walk any distance
mgoynes -- I am having a hard time with buttons as of late. There is a neat gadget called a Button Hook that allows you to button and unbutton easily.
chuck -- I have used button hook for several years. I also use cane and scooter but my bed is high enough that I don't have a problem there.
bob -- Cane for walking, electric scooter for long distances and a bed elevator
susannew -- A bed elevator?
bob -- Yes bed elevator that's what we call them in the UK. I sleep in a fairly upright position which has also help alleviate the throat spasms
jean-s -- To speak about another thing I have a news for you. Now there is a French KD association named ARMK We had our first meeting 2 weeks ago. the president is jean Jacques (pomerol).
susannew -- Wonderful Jean! What can you tell us of your goals and how
many individuals in France have you found?
jean-s -- Susanne : Our goals is very closely than yours. For the moment
we are about 30 KD patients but our first task will be to look for others
by all means possible (press, web, medical association, etc...)
susannew -- Jean: Do you plan to have a web site? Rolf and Clause-Peter have put up a German SBMA web site. They are linked to our web site and we have linked to theirs. Same as Ton's Dutch site and Charlie's Canadian site.
susannew -- The Kennedy's Disease Association is here for anyone in the world as
the internet is international. Although its difficult for us to satisfy everyone's needs through the entire world. We're here to share information for anyone who seeks it, support research and to educate the medical community. Our web site address is:
http://www.geocities.com/terry_waite_2000/ .
susannew -- There is strength in numbers! The more we know about SBMA and how many individuals are affected worldwide, the more good we all can do!
jean-s -- Susanne : Yves will build a website for ARMK as soon as
possible. He will put on the site all links to other KD site.
susannew -- What does ARMK stand for?
susannew -- French for SBMA?
jean-s -- ARMK for "Association pour la Recherche sur la Maladie de
Kennedy" : Kennedy disease Research Association
susannew -- Has anyone experimented with growth hormones?
susannew -- We have heard of a doctor who self prescribed (experimented) growth hormones and mention together and he was able to have good results, feel stronger, for a few months, but then the good results suddenly stopped and he reverted back to where he was prior to the treatments.
bob -- I should point out that I do have problems with swallowing and do have a PEG. I take half my food intake by mouth and the other half overnight via the PEG thus I have tended to get a lot of spasms overnight.
susannew -- What does PEG stand for?
bob -- Back again Susan a peg is basically a permanent tube in my stomach
where I can take food through & medication
susannew -- I already mentioned it and recommended it to Terry for his spasms.
susannew -- No recommended, suggested!
mgoynes -- Has anyone tried Vioxx for pain? It is what I would like to call a Miracle
Drug. Both of my parents take it along with several friends. The only problem is the
cost.
bob -- {welcome bob}
susannew -- We have 15 minutes until closing. Any other thoughts in regards to medical aids, prescriptions or vitamins, herbal remedies?
billerickson -- My neurologist also recommended 1000 Isu of vitamin E per day. I have taken that for the past 5 yrs.
susannew -- Bill: What did he say it was for?
billerickson -- Control free running radicals--whatever those buggers are!
susannew -- Free radicals are what cause Cancer, aren't they?
mgoynes -- Does anyone know how the Creatine case studies are going? Is it a bust?
susannew -- I don't know about the studies, but Terry tried Creatine and it did nothing for him. He also tried Glucosamine and has not had any luck there either.
mgoynes -- I also take 1000 E along with 1000 C, a B-complex and some Zinc/Magnesium.
susannew -- I believe vitamins are important for general health. I wonder if there are any vitamins that would specifically help SBMA in particular? Any thoughts?
jean-s -- Mike : do you auto-medication vitamins and other drugs or they
are prescribe by your doctor ?
mgoynes -- My doctor suggested the E and a daily dose of aspirin. I take
the rest just to be safe. I also take garlic.
susannew -- We have 5 minutes left. I want to thank you all for coming today and
for being so open to share your personal information. Its very much appreciated.
mgoynes -- So long everybody. Make your plans to be in Chicago June 22 for
FSMA!
billerickson -- Thank you Susanne. I really appreciate the information I
have received from your efforts.
jean-s -- Mike : very good cocktail ! Bye and read you next time take care
chuck -- So long and enjoyed very much. Thanks to all.
billerickson -- {goodbye billerickson}
mgoynes -- {goodbye mgoynes}
chuck -- {goodbye chuck}
susannew -- {goodbye susannew}
jean-s -- I also have to go, thank you everybody for this very interesting
conversation
jean-s -- {goodbye jean-s}

End Chat