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| There are many reasons for this page. While
there is
much information on Muscular Dystrophy on the internet and various
other
places. I wanted to provide a place where I could talk about what I
have
learned about myself.
Let me make it perfectly clear that I am neither a doctor or any other type of health care professional. My only knowledge comes from the fact that I have a form of MD called Friedreich's Ataxia. I have spent some time looking for information and possible treatments which I will share with anyone here. I invite anyone to share any knowledge they may have with visitors to this site. Simply email me Do you have a poem or story? Send it here I'm afraid there was no way to make this short
as there
is lots of information here. Some may apply to many people and some
only
to me. I have to make another point here...I use
homeopathic remedies, some people have a very difficult time accepting
that and if you are one of the people are unwilling to consider them I
would suggest that you not even read any further. first remedy was mainly for the problem of urinating very frequently |
| Fri 15, August 2003
Friday night (sat morning) 2:30am took the 5c....slept till about 10am. Woke up with a slight headache (base of skull, sore around eyes, alternating between left and right temple region). Urinated several times during the early part of the day, decreased in frequency later in the day (normal). Took cat naps in the chair most of the day but still had the headache when I woke up. Legs itched from mosquito bites (got the impression I maybe had more feeling in legs). Legs would jerk occasionally while seated. By later in the day even when I felt like I needed to urinate I was able to hold it and had no urgent trips to urinate (first time I can remember that situation) Sat night (Sun morning) 3am took the 7c.....slept till 11:30 am. Made it all night without getting up to urinate (normally get up a couple of times at night). Went when I got up simply because I figured I should (had no immediate need) and it has been a couple of hours and I haven't had to go again. Still feel tired but no headache today. Still have the tendency to stand on outside edge of right foot. Knees still getting stiff and have to force them to bend. Sun night (Mon morning) 1:30am took the 9c.....woke up at 5:30am to urinate. Have been to the bathroom a little more often today. Still tending to stand on outside edge of right foot, turns that way when I step. No headache. Dinner didn't seem to agree with me somehow (feel ok but almost spit up). Mon night (Tues morning) 2:30am took the 12c....slept through the night...bladder ok, Right knee hurt when walking. Woke up more tired than I was when I went to sleep. Easily aggravated (short tempered). Have things to do but not much enthusiasm to do them. Had a computer to work on and forced myself to start on it (I guess I have to force myself to start...then I don't want to quit till it's done). Ears still ringing (louder in right ear), plug ears ringing continues plus I hear the roaring. Tried my old shoes to see if it was shoes too tight or me, shoes still feel tight when sitting but foot doesn't turn as bad....easier to step flat rather than on edge of foot. Emotions have been pretty even...not depressed and not happy. Tues night (Wed morning) 1:30am took the 15c....got up to urinate at 5:30am...bladder ok. No enthusiasm.. Legs feel weak. Sharp pain in right shoulder when I lift anything even a glass of water. Bladder got really full a couple of times today while I was out, I managed to hold it but have went a little more today. Ears still ringing. Wed night (Thurs morning) 1:30am took the 18c....woke up at 6:30 and went back to sleep till 8 before I went to the bathroom (bladder was full but could hold it). Sinuses were plugged up pretty good and was sweating in my sleep. Right shoulder still has the pain and noticed right thumb looks like it's out of joint and sore (one could be the cause of the other...have had my left wrist out and found problem was in elbow). Ears still ringing. Mood is ok but would be quick tempered...don't feel like getting out. Got a submarine sandwich and the inside of my mouth blistered from the bread I believe. Thurs night (Fri morning) 12:30am took the 24c....slept through the night (no dreams). Got up at 8 with a full bladder. Neck stiff, headache from my neck and sinus drainage in my throat. Eyes very tired. Leaked a little this afternoon. Ears still ringing but doesn't seem to be as loud. Headache went away this afternoon. When I was doing email this morning the words looked doubled and fuzzy (is better now). Fri night (Sat morning) 12:30am took the 30c.... had to get up early to travel...9 hour drive and only stopped 3 times to urinate and usually then was to get gas and took advantage of the stop. Dragging toes pretty heavy and ankle turning bad, Felt pretty good. Ears ringing. Was gone for a little over a week and didn't keep a log so I'll have to list the things I noticed. Sorry about not being able to be more specific. Since ankle was turning so bad I decided to try an old pair of shoes I had left at my sisters house last year and that problem got better...didn't go away but it improved so the shoes had a bearing on it. Bladder wasn't bad...I would say it would have been near normal for most people. After coffee in the morning would have to urinate more frequently for awhile but it would improve after some time. After eating it would slow down some. Only had a couple of urgent trips during the week. As long as I didn't drink anything late I could generally make it all night with maybe 1 trip to the bathroom during the night. Was having more bowel movements but I think that was from eating more regular. Woke up early most mornings but didn't feel rested (still tired). Humidity was high and it was hot so would have a sinus headache and be sore and stiff. Would improve some after moving around for awhile. Left knee started giving me pain on saturday but I did
seem to be doing
better going downhill than I used to do. Still having trouble picking
my
feet up (feet feel heavy). Sept
2003
Tues. Sept 2 2003. Didn't
lay down till about 5am after the drive back
so I slept till about 10 or 10:30 am. Woke up with a full bladder but
could
hold it. Took about 3 tries to get up, was stiff and sore, difficult to
move. Have much to do from being gone for over a week. Stiffness eased
up after moving around some, balance off and have to be careful so as
not
to fall. Left ear has felt like a hair or something in it since last
night
(nothing there that I can find). Used some anti perspirant yesterday
and
underarms itch even after taking a bath (almost feels sore but no
rash).
Feel kind of down in the dumps. Ears ringing and a little dizzy feeling
(haven't taken time to eat yet today). Walking very slow and deliberate
trying to condition myself to pick toes up when I step. Left knee pain
has eased up considerably. Realized today I have what feels like a
pimple
on my tongue (right side near the front) maybe from something I ate
last
week.
Wed Sept. 3 2003. Went to sleep about 2am woke up at about 10:30am with a bad headache (base of skull and back of neck stiff, eyes tired and sore also). Had full bladder but no problem holding it. Don't seem to be dragging toes as heavy. Ears still ringing. Headache finally went away late in the day. Seems like the pimple on my tongue is gone. Feeling kind of down (maybe depressed). Legs got very weak at one point today and couldn't stand up for a minute. Seem to be picking feet up a little better now (not dragging toes as heavy). Left knee not hurting much. Without shoes still turning right ankle and standing on outside edge of foot. Thurs Sept 4 2003. Went to bed about 3am woke up at 10am. Left knee hurt some but got better after moving around (I must be doing something to it while sleeping). Did not wake up after going to sleep but felt tired when I got up. Bladder was full but wasn't real urgent (held bladder till I got to bathroom). Haven't had any ambition lately (have things to do but have trouble starting them). Ears still ringing. Balance still bad but seem to be dragging toes a little less. Last week I noticed my right calf was sore to the touch (up high), noticed today it's still sore but lower (don't notice it unless you touch it) Fri Sept 5 2003. Went to bed about 1:30am woke up at 6:30 with full bladder and stomach cramps, went to bathroom, didn't diminish stomach cramps (felt like I needed to go more but couldn't). Lay back down till 10:30. Woke up with right leg sore, like muscle had been tensed up (eased up after moving around some). Nose felt like something in it (when I cleaned it got some blood out of right nostril), my nose got broken when I was a teenager in a fight (I straightened it myself). Legs feel weak but picking toes up better than a month ago. Felt down last night... maybe depression. 1pm back in bathroom (feels like a lump in stomach) bowel movement loose (small balls) offensive odor (word putrid comes to mind) medium brown color. Feel slight burning pressure in rectum. Stomach making noises all day. Sneezing several times. Rough spots between toes. Sat Sept 6 2003. Went to bed about 2am slept till about 10:30am. Bladder is ok. Wake up almost more tired than when I go to sleep, Still no dreams. Mood has been very down. Ears still ringing, Get chilled easily and loud noise (music) bothers me. No appetite. Sun Sept 7 2003. Went to bed about 3am, slept till 10:30am. Still tired when I got up, very stiff (improved with movement). Bladder ok. Ears ringing very loud last night (still ringing today but not as loud). Dragging toes a little more today and a little more trouble holding bladder. Mental's a little better. Mon Sept 8 2003. Didn't lay down till 5:30am, was up an
hour later to
urinate. Got up at 8:30am for an appointment. Bladder seemed to be full
all the time. Headache in left eye (humidity is way up and probably
tired).
Knees don't want to bend. Feet felt very cold all night(like ice). Tues Sept 9 2003. Went to bed about 1am woke up at 10am with a headache(base of skull, left side mainly, neck very tight). Bladder is ok. Wed Sept 10 2003. Was up till after 4am (granddaughter sick) slept till almost 11am. Leg muscles still sore. Headache gone. Bladder ok. Still no dreams. Even though I still drag toes I seem to be able to lift foot higher to step up. Can seem to make myself do things even though I may not want to. Thurs Sept 11 2003. Went to bed about 2am, granddaughter woke me up at 11am but could not get moving. Leg muscles sore (even toes sore). Bladder ok. Woke up at 6am with full bladder but held it ok. Must have been dreaming or thinking of something but don't remember what. No headache but sinuses feel plugged up. Feet felt heavy today and feet are jerking tonight. Fri Sept 12 2003. Went to bed about 2am got up at 10am. Bladder holding good. No dreams. Very tired and stiff when I wake up in morning. Had a situation tonight, came on fast and I had no warning, leaked and couldn't hold it. Right foot got behind left and I couldn't move it, knees stiff. Sat Sept 13 2003. Bladder holding ok. Sore and stiff this morning (did not want to get up, still sleepy). Sun Sept 14 2003. Had very stiff neck when I got up this morning (started last night while sitting outside). All day have mentally felt able to hold bladder longer than physically able (have leaked some before getting to bathroom). Neck finally eased up some late in the day. I hadn't really mentioned it before because I can't be sure but I get the feeling there are times when I feel I'm stepping better when I walk (not sure if it's real or just in my mind) would probably be associated with the mental,s. Mon Sept 15 2003. Went to bed about 2am but bladder felt full and couldn't go to sleep, got up to urinate (minimal volume), laid back down and bladder still felt full, finally went to sleep sometime after 5am. Slept till noon (bladder seemed ok all day. Colors seemed to be darker today (grass etc. seemed a darker green). Bladder was ok all day. Feel like I need to start getting up earlier in the morning. Had a slight headache today. Felt like hairs in my nose tickling today. Ears ringing. Still no dreams. Pain in left testicle (worse when sitting) eased up some pressing from above it. Tues Sept 16 2003. Went to bed about 1:30am woke up at 8:30am with full bladder, tried going back to sleep but finally got up at 9. Slight headache in left eye. Didn't want to leave the house but had the desire to get things done. Feet jerking while sitting (maybe I laced shoes too tight). Tried to drink extra water today so had to urinate every couple of hours. Wed Sept 17 2003. Went to bed about 1:30am woke up at 4am feeling like I was throwing up, taste of grease (had a meat loaf sandwich for dinner). Did not throw up, forced myself to urinate since I was already in the bathroom. Slept till almost 11am. Left leg sore when I got up. Bladder felt ok. Leaked once during the day but didn't feel it coming on. Slight headache on right side of head. Lost balance twice tonight and had to grab something to keep from falling over. Sat down tonight and right leg kept bouncing (pushed on knee and it stopped) Thurs Sept 18 2003. Not much happening today. Felt ok, bladder not bad. When taking a bath I noticed my testicles were sore to the touch. Fri Sept 19 2003. Went to bed about 3am, woke up at 6am hearing running water with the urge to urinate (it was raining outside), felt like I had been dreaming but couldn't remember the dream (other than the impression that someone was pulling out nose hairs with tweezers or something), went to the bathroom but didn't urinate much (took 3 tries to stand up , was stiff). Went back to sleep at about 7am, alarm went off at 8:30 but I turned it off. Didn't get up till about 11am... back sore, legs stiff. Tend to stand on edges of feet more today (left foot mostly this time). Feet were jerking today while sitting and right leg started bouncing again. Mood has been pretty upbeat. Remedy didn't come today (maybe tomorrow). Tired but don't want to go to sleep. Sat Sept 20 2003. Didn't lay down till 7am (couldn't sleep) got up at 10am. Tired but ok. Ears still ringing, no dreams. Remedy came today...took it at 3pm. Bladder has been good. Sun Sept 21 2003. Went to sleep at about 1:30am and slept till 11am. Bladder was ok. Still no dreams and still tired when I woke up, stiff and sore from laying down too long. Last night when walking, when I picked up right foot to step it felt like someone was sticking me with a pin (right upper thigh about 2 inches to the right of the groin), same thing early today but not as bad...went away after an hour or so. Ears still ringing. Not much patience today ( I kept a lid on it) but could have been short tempered. Not much desire to do anything (normal state for me). Mon Sept 22 2003. Went to bed about 3:30am (restless, took awhile to go to sleep), got up about 11:30am still tired and sore, ears ringing. Slight headache and eyes sore (raining outside, humidity up. Bladder ok, stomach sore (went to bathroom, I think it was from what I've eaten the past few days). This evening I was smelling coffee but there wasn't any (very strong and pleasant smell). Tues Sept 23 2003. Went to bed about 5am (restless) got up at 10am (eyes tired but felt ok). Bladder fine, stomach sore (went to bathroom, much straining to pass one little ball). Was sitting in a chair in the living room and my testicles are very sore (like clothes are too tight pressing against them). Tenderhearted today (cry easily at sad situations). Wed Sept 24 2003. Went to bed about 3am (testicle pain, clothes pressing on them made it uncomfortable) Slept till 11am. Still felt tired, headache starting at occiput around to left temple (do not feel refreshed after sleeping). Bladder holding well (haven't had to get up to urinate at night). Very stiff (eases up some after getting up and moving but never goes away). Can't bend down to pick something up (left leg will not hold my weight when I bend it). Headache eased up after taking a hot bath (headache may have been due to a weather change...we had severe thunderstorms today). Haven't had much ambition to do anything (even when I do I tend to waste the day watching tv). Thurs Sept 25 2003. Went to bed about 3am, got up at 10:30am. Legs very stiff and sore today. Must have been dreaming last night but only remember bits of it (high points are, back window in a car I used to own broken out. They were having trouble replacing it at a house were my kids grew up, had like a parking lot rather than a driveway and I must have been sweating because my hair was wet and I was wiping it with a paper towel) Can't give more details as that is all I can recall. Bladder is ok (holding it at least). I think my tongue is less coated but I hadn't noticed it much so I'm not sure. Feel ok as far as mental's go. Legs feel tired and feet are heavy. Ears still ringing very loud. Fri Sept 26 2003. Went to bed earlier (about 12:30am) felt tight in my neck and a dull headache. Finally fell asleep (must have been about 2am). Woke up about 9am to urinate, got in a hot tub as the headache got worse overnight. Soaked in the hot water for about an hour. Legs are stiff and hurt some (feel weak in the legs). Headache hasn't stopped yet, had a cup of coffee and a couple of pieces of toast and took some aspirin. Ate some mixed nuts last night, have been thirsty today and my lips feel blistered. Sat Sept 27 2003. Eyes were very dark under eyes and on inside by nose yesterday, still dark today but more normal for me. Went to bed about 12:30am, headache woke me up at 8:30am, finally got up at 9:15am. Felt like a sore throat on left side (same side head hurt on). Eased up after a hot bath. Left knee sore when I walk (pain in knee). Feet feel heavy. Knees don't want to bend stepping up or down stairs. Tendency to stand on outside edges of feet this morning. Bladder was ok. Sun Sept 28 2003. Went to bed about 3am (woke up 3 or 4 times during night with stiff neck and headache), got up about 10:30am from headache, went away after moving around a bit. Full bladder but held it ok. Had a stool, stomach making weird noises (hadn't had a complete stool in 3 or 4 days). Legs sore and tired, dragging toes a little worse, right shoulder sore. No dreams. Don't have much ambition. Getting a headache from reading (goes away when I quit reading). Mon Sept 29 2003. Went to bed about 2am (was up twice to urinate by 6:30am) then didn't get up to go again till 1pm, got up at 12pm. Bladder holding well now. Nose is plugged up and have noticed my breath feels like it smells really bad. Right shoulder sore from laying on right side (can't get comfortable on left side). Bladder has been good but having more trouble picking feet up and bending knees. Was coming in the house and left knee would not bend for me to pick foot up (had to allow myself to fall to get knee bent). Tues Sept 30 2003. Went to bed about 3:30am, got up at 8:45am. Didn't have to get up to urinate although I woke up a few times. Bladder is doing really well. Mental's are ok. Left knee hurts when I walk (from hyper extending it). I was reading up on the next remedy today, I know we had looked at it before and don't know now why we used something else instead. Seems to match just about everything (even down to the bladder). I'm not trying to rush it, I'm waiting patiently. Have been tired today but once I get started at something I have tried to finish it (still feel lazy though).Oct 2003
Wed Oct 1 2003. Went to bed
about 3am, couldn't sleep and got up at
4am for about an hour. Finally managed to go to sleep, woke up 2 or 3
times.
Got up at 11am with full bladder. Ears still ringing. Bladder ok. Have
a sore spot in neck (left side in back, down at shoulder level).
Bit the tip of my tongue today. Still have some pain (pressure) in my
testicles
and scrotum itches and stays moist from sweating. Headache tonight over
left eye.
Thurs Oct 2 2003. Went to bed about 1:30am, had trouble getting to sleep, got up at 9:30am. Bladder doing ok. Legs feel tired and I'm moving slow. Ears still ringing. Legs feel weak and tired. Feet feel cold. Fri Oct 3 2003. Went to bed about 2am, watched tv till about 3am, didn't get up through the night. Got up at 10am, stretched when I woke up and got a cramp in right calf. Bladder doing good, ears still ringing but not quite as loud. Ankles looked swollen to me today and legs looked smaller and less defined. Legs tired and haven't walked much today, was having more trouble with balance. Sat Oct 4 2003. Bladder ok. Left hand cramped last night for a short time. Sun Oct 5 2003. Went to bed earlier last night about 12am, got up at 7:30am. Woke up about 4 times but went back to sleep. Held bladder till I got up this morning. Ears ringing still. Legs sore. When I don't eat I urinate more than when I do eat. Took a long nap in the afternoon. Legs started jerking (maybe from the way pressure was put on them from sitting in the chair napping). Feet and legs feel very tired. Mental's seem a little depressed and I put off cleaning up (seems like I just don't feel like putting the effort in). Mon Oct 6 2003. Didn't lay down till 5:30am. Had trouble going to sleep (whichever side I laid on that leg got numb). Got up a little after 10am (left leg gave out when I stood up the first time). Very stiff. Noticed an eruption on lower lip, left side. Dropped some papers etc. and tried to bend over to pick them up and legs were so weak they wouldn't hold me (good thing I have good upper body strength or I wouldn't have been able to get out of the floor). My wife says I'm a smart ass (I suppose it's true especially with her) dry sense of humor. I will be talking and forget the word I was going to use (it's on the tip of my tongue but I have to think about it). Next remedy didn't come today, maybe tomorrow. Tues Oct 7 2003. Went to bed about 1:30am, slept too long didn't get up till almost 11:30am. Feet cramped all night (felt like something was too tight around them, worse laying on left side). Was difficult to sit up when I woke up, once I did I could get to my feet better than yesterday, legs are sore. Bladder is ok. Remedy didn't come again today. Feels like feet are very heavy, have to drag them rather that pick them up. Wed Oct 8 2003. Went to bed at 3am, got up at 8:30am.
Bladder ok. Ears
still ringing, still dragging feet. |
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