Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

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Kennedy's Disease Chat Transcript
9-22-01
Topics: Pain

Chat Participants:

  • patrick
  • jean
  • kdfl
  • toddrallen
  • terryw
  • lenj
  • don48312
  • catherine

Begin Chat

patrick -- {welcome patrick}

patrick -- Hello, my name is Patrick. I will be the host for today's chat. The subject of today's chat is "Pain with Kennedy's Disease". According to research, KD does not cause a change in sensation. This means KD, in itself, causes neither pain nor its 'opposite', decreased sensation. However, KD causes motor neuron disease, which results in decreased use of muscles, spasms, and decreased blood circulation in affected parts. These secondary effects may result in the sensation of pain in a KD patient. That is what we hope to cover today. I will repeat this clarification a few times during the chat.

patrick -- {welcome patrick}

kdfl -- {welcome kdfl}

kdfl -- Good Morning Patrick, looks like a slow start this morning.

patrick -- Hi John. I thought I was alone alone in cyberspace.

jean -- {welcome jean}

patrick -- Comment allez vous, Jean?

kdfl -- Good morning Jean

jean -- Bonjour and hellow

toddrallen -- {welcome toddrallen}

toddrallen -- hi

don48312 -- {welcome don48312}

patrick -- We have 'officially' begun. Do either of you experience pain your think is related to KD?

patrick -- Hello, all. This chat is starting like an old car on a cold morning...

kdfl -- I guess all I have to say about pain with KD is that I have none whatsoever. I guess I'm very fortunate in that respect as I know some of you have do experience pain.

don48312 -- <--- NO PAIN

lenj -- {welcome lenj}

toddrallen -- at the SMA conference I asked Dr. Merry & Dr. Fischbeck about sensory involvement and both agreed that there is some.

lenj -- Good morning everyone

don48312 -- morning all

don48312 -- we are back in SCC John

kdfl -- CORRECTION, Some of you have experienced pain.

jean -- I speak over leg pain !!!I do not have pain, my muscles are normal. My brother has no pain, his muscles are thin. My uncle has always much pain, his muscles are thick

toddrallen -- I experience both some numbness & on occasion acute pain in combination with cramps & muscle spasms. Usually when tired.

patrick -- I have had three back operations since 1981, so my lower back is full of scar tissue and bone spurs, etc. My pain there is related to the trauma, and KD makes it worse as my back muscles do not support my spine.

lenj -- I have constant pain in my ankles--more like throbbing--don't know if it's KD or too much weight or something else

toddrallen -- When I exercise hard, pain gets worse. Whenever I do an activity where I have to hold an unusual position, like working on my car I will get cramps and then pain.

jean -- Do you make the same observations like me

patrick -- Todd, what was the exact discussion about sensation? Did they say that KD CAUSED a change in sensory nerves, or that there was a change in sensation related to changes brought on by KD?

lenj -- I also have lower back pain but that comes from a disc problem at L-5 It gets worse as I walk funny due to tiredness caused by KD

jean -- Please tell me if your muscles are thin, normal or thick and if you have pain or not

patrick -- Len, I can relate to that. My posture sucks, and that is caused by muscular weakness (KD), which causes me to walk funny, which changes the angle on my sacrum and vertebrae, which pinches nerves and causes inflammation, which HURTS the more I walk.

toddrallen -- I also have decreased proprioception in my ankles. This means I cannot properly sense the orientation of my feet & ankles. If I walk without something stiff over my ankles I will step with my foot

twisted and sprain an ankle.

kdfl -- I wear an AFO (Ankle-Foot-Orthotic) on both my ankles to keep from having sprained ankles.

lenj -- KDFL is that the type of support that is spring loaded to help lift

your feet and keep you from tripping and falling

lenj -- loaded

kdfl -- Len, yes that is what I am talking about but no springs, just plastic hinges on either side.

toddrallen -- The ankle brace I have is made of canvas with plastic inserts on the sides. It doesn't provide a tremendous amount of support, but lets me 'feel' the position of my foot and stops me from stepping

wrong preventing sprains. Unfortunately, it creates small sores where it rubs me funny if I wear it continuously.

kdfl -- Todd, My plastic ones have been form fitted to my ankle and foot and don't cause any irritation when I wear them for long periods.

toddrallen -- kdfl, yeah I should probably get a better quality one but my crummy HMO refused to pay for anything relating to this disease.

kdfl -- Todd, sorry to hear that. Try the MDA. They are working with my neurologist to help me with the aids to make life easier.

lenj -- {welcome lenj}

toddrallen -- The MDA offered to help, but I can afford it myself (if I have to) so I don't want to take their money when people who have no other recourse depend on it.

patrick -- Todd, I did that a lot when I first started having KD symptoms (before I was diagnosed). Now that I am much weaker, I am more careful when I step, and I turn my ankles much less.

lenj -- Todd and Patrick I am the same as both of you. I'm sure the pain is related to our KD weakness but not necessarily caused by KD

toddrallen -- My facial muscles are very deteriorated. Trying to eat soup, cereal or even drinking can require tremendous effort to make my lips seal. Exerting the effort is painful much like trying to lift a 200 lb piece of furniture.

patrick -- When I ruptured my L5-S1 disk in '81, I about chut off the nerve to my foot. As the axon regreww, I gained 80% of the sensation, but I also lost proprioceptive feedback from my outer right foot and ankle.

catherine -- {welcome catherine}

toddrallen -- pat, yes a lot of my problems are caused by not realizing / accepting my limitations and acting as if I'm still normal. Then looking up in frustration and disbelief when I find myself on the ground for the nth time.

kdfl -- Todd, I can relate to that falling. Even when being careful, that senior moment creeps up and hits you very unexpectedly

patrick -- When KD causes the death (apoptosis) of a nerve, other nerves around it branch out to connect to its muscle bundle. However, as KD progresses, these nerves die, too. The end result is that fewer and fewer muscle bundles can be activated. Where we used to could lift X amount of weight, for Y times, before we felt the burn in our muscles from the exercise, now it happens much sooner, as we have fewer muscle fibers that can be activated.

patrick -- Todd, I know that feeling. I get groceries, and carry them in the house. Even though they are 'little' bags, I pay with sore muscles and tired body to days.

patrick -- to days = for days

patrick -- When I was trashing my right ankle regularly (pre KD diagnosis), I though I was just being clumsy. Then a doctor told me that I had torn virtually all the ligaments on the outer side of my ankle. They

made a prosthesis for me, but it immobilized my whole foot. The cure was worse than the disease.

jean -- {goodbye jean}

toddrallen -- {welcome toddrallen}

toddrallen -- I'm back -- flaky internet connection

lenj -- Sorry I was cut off

patrick -- In regard to pain, some is caused indirectly by KD. When we don't use a muscle (like a calf muscle) because it is weak or we're just sitting a while, it can get painful. Movement of a muscle like the calf pumps blood and lymph back up to the heart against gravity. Without that movement, we can get pain like a simple itch or ache. Or a thrombosis (blood clot) can form and cause intense pain (and it can move to your heart or brain with fatal results). (There has been discussion in newspapers recently about healthy people who take long flights (like to Australia), never exercise, develop thrombosis, and die of a heart attack when they get off the plane.) Has anyone's doctor discussed this with them?

catherine -- Hi, I'm Kitty. My dad has KD and my husband and I were wondering if there was anything we can do to help my dad when he's having pain - does massage help?

toddrallen -- Catherine, I find that a very hot shower / bath and then lying down and resting for a bit seem to work the best for me when I'm experiencing pain or cramping.

Kdfl That hot tub wouldn't work for me, I couldn't get out.

toddrallen -- kdfl, try lifting yourself out with the tub really full. That makes it easier for me. Who knows in a few more years though. Maybe a hoist...

patrick -- John, try sitting in the shower, direct warm water on your legs, and manually exercise them. It's what I've learned to do. Also gets my feet clean. :-)

kdfl -- Patrick, I can't find a seat high enough to let me get up after I sit down.

patrick -- Kitty, I agree with Todd. Moist heat causes vasodilatation and helps the blood to move. I think that massage is also good. Massage from the feet towards the heart. Sometimes an analgesic balm (like Icy-Hot)

helps me, too.

lenj -- Kitty rest along with an anti-inflammatory like ibuprofen help me.

patrick -- I agree with Len. An anti-inflammatory drug helps reduce the inflammation that occurs when we over-use our muscles. They are called NSAIDs (non-steroidal anti-inflammatory drugs), and include aspirin, ibuprophen (Motrin), naprosyn, and many others. The problem with them is that they tend to cause stomach distress. Discuss them with your doctor, or with a pharmacist if you buy the over-the-counter ones.

patrick -- hels=helps

toddrallen -- I haven't had much success reducing cramps / pain with any over the counter pills. Much better is just to avoid situations likely to trigger cramping as much as possible.

patrick -- Kitty, where is his pain, and when does he experience it?

catherine -- Usually it is in his lower legs, after he has overdone an activity.

toddrallen -- My pain is worst when I'm feeling stressed. Anything I can do to keep stress minimized helps.

lenj -- Todd stress really amplifies pain. Showers help but no way can I get up from a bathtub

patrick -- Hello, my name is Patrick. I will be the host for today's chat. The subject of today's chat is "Pain with Kennedy's Disease". We are now at the half-way point.

catherine -- Thanks. I just talked to him on the phone and he had never tried the icy-hot or massage.

patrick -- Kitty, if the pain is localized and/or acute, have him consult his doctor. We don't want him to use home treatment on an embolism that should be aggressively treated by a physician!

catherine -- He said it is never acute - more like an ache after a hard work-out. Thank-you for the concern, however.

toddrallen -- Kitty, for that dull work out like pain, I find it passes quickly if I can simply find a comfortable place like a bed to lie flat and completely relax. Trying to ignore the pain and continue usually makes it get much worse quickly.

patrick -- Kitty, for generalized pain and moderate spasms, try damp heat. Soak a towel in hot water, wring it out, and apply it to increase circulation. Some heating pads are waterproof and have a terry cloth cover

that can be moistened. However, care must be taken not to burn the patient. Call up a physical therapist and get their advice.

toddrallen -- kdfl, I have an office chair with a pretty powerful gas shock in it. If I pull the lever as I stand it pushes me up pretty well.


kdfl -- Todd, my savior for getting up from chairs is an Up-Lift Seat Assist. It pushes up automatically when I take a little weight off.

kdfl -- Todd, I need both hands to help me get up.

patrick -- John, I saw that used by a woman at the SMA Conference in St Louis last year. Do they make ones for he-men like me? (Read: big and fat)

kdfl -- Patrick, they make one that starts at 230 lbs but I don't know how high it goes.

toddrallen -- Can an Up-Lift be fitted to a toilet seat? I often have to make a trip to the bathroom in the middle of the night. At night I tend to be much clumsier and weaker. I can still pull/push my way back up off the toilet, but in a few more years it will be a real challenge.

kdfl -- Todd, infact they do make one. Right now am using a toilet seat riser of about 8 inches that is working well for me.

kdfl -- Todd, take a look at up-lift.com on the Internet to see what they have.

toddrallen -- kdfl, thanks, I'll look.

lenj -- I have has occasional severe pain in my right arm muscle or shoulder, numbness in my hand and sometimes pain in the neck. My neurologist and neurosurgeon Dave followed a narrowing in my spinal column and have determined that the cause of the pain etc is not KD. They are scheduling neck surgery in the next few weeks.

lenj -- Sorry for typing mistakes--my hand doesn't work well.

patrick -- Good luck, Len. They have made great advances in surgery and I trust everything will be fine for you.

toddrallen -- lenj, I'm also getting a lot of arm pain and numbness in my left arm & hand lately. Usually worse when fatigued. Let me know if your surgery, treatment helps and I'll have mine checked out..

lenj -- Todd--did you have these symptoms when we met in Chicago or noticing them lately.

toddrallen -- lenj, the arm/hand numbness has really just gotten bad in the last 3 months. Before that almost never. Now whenever I type for more than an hour it gets bad. I'm a programmer so it happens quite a bit. I also get it in my legs occasionally but it is not yet too bad.

kdfl -- It sounds to me like most of the pain comes from over-exertion. Maybe that is why I don't have pain. I don't do too much to get overly tired.

lenj -- Todd sorry to hear that. A few months ago at the conference it looked like didn't have many symptoms

kdfl -- Kitty, I'd like to invite your dad to sit in on these chats with you.

catherine -- I'm hoping to get him on next time and type for him. He was very excited to find out about these chats.

lenj -- Catherine--Has he viewed some of the topics that the KDA web site has to offer

catherine -- kdfl - I don't want to stray from the planned topic for today, but he has looked at some of the information on the site and was very encouraged by it.

kdfl -- Kitty, it helps a lot to know that we aren't alone even though all of our symptoms are so different.

patrick -- Another tool that can be used is a TENS unit (I forget the full name, but the last two letters is Nerve Stimulation). My doctor prescribed it and my physical therapist taught me how to use it. It is a little

pager-sized device, powered by batteries, that has four leads (two channels). If I have a cramp that won't go away, or a muscle is really sore, I attach the leads to the area (like an EKG), turn it on, adjust the strength, and clip it to my belt. Mine is adjustable for strength (from a tickle to muscle jump), the cycling of the charge (both the ramp-up and ramp-down, and the frequency of the whole cycle). At a very low level, it

blocks pain. At a higher level it massages me. Some times, it fatigues a muscle so that it relaxes and ceases to cramp or hurt.

toddrallen -- The numbness is funny, it feels much like my circulation is cut off, but I think my circulation is fine and it will happen when active, unlike my leg going to sleep from sitting, etc.

patrick -- Todd, sometimes numbness in the hand is caused by nerve root compression in the cervical vertebrae. If your neck muscles are weak, you might try being careful with your posture, changing your monitor position, shrugging your shoulders and rolling your head regularly, wearing a neck support, etc.

patrick -- Another cause of numbness in the hands is bruising (even resting your weight upon) the area under your elbow just forward of and outside of the tip. There is a bundle of nerves there, in a wrapper, that

if it becomes inflamed, can squeeze the nerves in the bundle. The wrapper doesn't expand, and nerves are shut down, causing numbness in the and fingers.

lenj -- Patrick-I noticed numbness while at the computer leaning on that spot. Thanks I'll be more careful

toddrallen -- I lay down on a floor mat for a while when my arm goes numb at work. It passes in a few minutes. Trying to shake it out doesn't work too well.

terryw -- Todd, I have found that laying down and totally relaxing the body is the only way to recharge.

toddrallen -- Terry, it's the same for me. Recharge is a good description.

terryw -- We are like a worn out Ni-CAD battery. cant hold a charge anymore. that's how I explain it to others

kdfl -- Terry, that is a VERY good analogy.

lenj -- How do you guys get up from the floor afterward. I can't

kdfl -- Len, I'm with you and was wondering the same thing.

terryw -- I struggle up using a table or chair

lenj -- For cramps Quinine sulphate works well for me. It formerly was sold over the counter as Legotrim, now prescription only except in Canada

toddrallen -- lenj, fortunately, the numbness is the only real new symptom for me, otherwise I'm still about the same. How about yourself, holding up well?

toddrallen -- I tried the quinine. It helped a little, but I had to take it in advance. Taking it after cramps started did nothing.

lenj -- About the same except getting weaker overall. A scooter is probably my next acquisition. Also wintering in Vegas--NO SNOW

terryw -- {welcome terryw}

terryw -- Hey everyone

terryw -- just dropped in to say hello

toddrallen -- Hi Terry!

terryw -- feeling pretty bad today, over did it yesterday

lenj -- Hi Terry You have to learn to slow down.

toddrallen -- Terry, sorry to hear that, hope you feel better soon. I'd been meaning to write you & Susanne since the attack in NY. Was horrified to find out that AON had so many people there. I hope all is ok for

Susanne.

terryw -- Thanks Todd, Susanne is OK. they lost some people from her company. Susanne knew 1 of them.

terryw -- Hey, we have a new KD individual that contacted us yesterday. he is the youngest yet diagnosed at 29 years of age,, he is 30 now.

patrick -- Hi all, we are now just past the official end of the chat session. We have maybe 12 minutes left.

patrick -- I learned this info the hard way. I slipped on the ice, slammed down on my elbow, and within a week couldn't feel anything in my hand. I had a number of those "fun" neurology tests where they stick electrified needles in the most sensitive spots... The neurologist decided I had some older damage to my neck, stenosis, causing a pinching of the nerves to my arm. I also had a sever bruise on my elbow which swelled up and really shut down the sensation in my left hand. All that science and money and

the verdict: do nothing, take it easy, and maybe it will go away and I'll feel normal. Again, it might stay numb forever. Let's hear it for Western medicine!!!

terryw -- I have fallen twice in the past week in the house on the stairs

terryw -- I am OK

toddrallen -- lenj, I'm 38. I don't know what I'll do when I have a few more years on me. Hope the researchers make some fast progress...

terryw -- Time to look for a 1 story I guess

terryw -- I will be 40 on Oct 2

kdfl -- 1 stories and ramps are the order for the day for me.

terryw -- Its almost cut off time

patrick -- Maybe someone will invent personal airbags. If we fall, they deploy and bounce us back on our feet. Then they automatically retract and are ready for our next misadventure...

lenj -- Todd you'll learn to deal with it and make due like the rest of us. Keep your chin up and keep pushing yourself. You will be surprised

terryw -- Thanks for hosting today patrick, Great job !!!

toddrallen -- Terry, get looking for a new place quick. It will only get tougher to move the longer you wait. I think a lot about where I'm going next. It will be a 1 story house in a place with a better climate. With

luck it will be my final home. I don't look forward to moving.

patrick -- Does anyone use those crutches which have an extension up to the bicep area with a cuff device that fits around your arm?

kdfl -- I know of someone in Indiana that does and he swears by them.

lenj -- Mt neurologist wants me to use them, but I refused. My cane has been enough for now

toddrallen -- patrick, I've seen those, but never used them. When my ankles were really bad I was using a set of standard full under the armpit crutches.

catherine -- Thanks everyone. It was wonderful to discover this chat. Cheers.

catherine -- {goodbye catherine}

toddrallen -- Thanks patrick, I missed the last couple chats, it's been good to talk to everyone again.

terryw -- I know exactly what you mean Todd.

terryw -- Bye All

terryw -- {goodbye terryw}

patrick -- Nice talking with you, too. I feel I'm getting to know you, and it is nice to meet new people, also!

lenj -- Goodbye everyone. Thank you I find these chats uplifting

lenj -- {goodbye lenj}

patrick -- Len, I use just a walking stick now, so I have at least one hand free. I was just wondering if using to sticks had any advantages.

kdfl -- See you all in a couple weeks.

patrick -- OK John. Adios!

patrick -- One minute to go...



End Chat