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 much of that information
could
be located easily.
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
Friedrich'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
If you read as much as I
have from the
conventional medical
field you tend to lose hope of a treatment or cure.
My feelings are do as much as you can. I never accept
what the doctors tell me and I do things they say I can't do. My
younger brother never let his condition stop him as long as he could
keep going he did and attempted things even I didn't consider.
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.
I
asked the homeopath one
day who
is helping me what advice I could give people with one of the forms of
MD? His answer was "Get
to a good
homeopath
as soon as possible"
Aug 2009
Started working with
some remedies suggested by a person I was talking to on a
forum. I have used many of the remedies in the past. I am pleased with
how it is going and I hope I keep seeing positive results.
Thurs
Aug 6 2009. Started a new routine today. Hope it works out well, I feel
pretty good about it.
Will take Thuja 200c 3 times today at 6 hour intervals.
Currently: 1) Have had gas with pressure to have a stool but have only
been able to go a little. 2) Having trouble holding bladder (frequent
urination). 3) Trouble going to sleep at night (restless). 4) Pressure
in eyes (slight headache in eyes, probably sinus pressure). 5) Even
though I'm usually in my chair can't seem to keep my feet flat, ankles
turn even while sitting and feet are turned and laying on outside edges
of feet. 6) Legs stiff.
Mind: 1) Bored but have trouble making myself do anything. 2) Prefer
solitude. 3) Feel distant from family. 4) No sex drive.
Took first dose of Thuja at 12PM, second dose was a 6PM and third at
12AM.
Just before second dose had a much easier stool than usual (smelled
sour). Still having the frequent urination and none of the other things
have not changed.
Took second dose at 6PM, Wasn't really paying too much attention, got
really sleepy about 8:30PM (I'm always up late every night but it
wasn't the first time I got sleepy early), around 10PM I noticed my
feet were sitting a little more normally, will have to see how they do
for a couple of days before I put too much stake into it. Seemed to
feel like left foot was trying to turn around the time I took third
dose at 12AM.Feet felt cold when I got in bed but finally warmed up
enough so I could go to sleep.
Fri Aug 7 2009. Was very sleepy when I went to bed, feet were cold but
it didn't last as long as it had been lasting. Still had trouble with
bladder yesderday evening, I did make it through the night without
getting up though. Woke up with a bit of a stiff neck, felt better
after a little while. Feet still don't seem to turn as bad (I hope that
continues). Still a little stomach discomfort (feels mainly like
pressure, maybe a slight burning sensation, could be hunger as I didn't
eat anything yet today). Legs don't feel any stronger so far but I do
seem to have some feeling other than pain for the first time
in quite awhile. I will try to exercise them some today, if I can get
back to being able to lift my right foot and move it over for extended
periods I may actually be able to drive again but I won't get on the
road unless I feel it is safe for others. Haven't had any dreams in a
long time and I look forward to finding out what I dream about. I was
told years ago by a homeopath from India that things happen first in
your dreams, at that point in my life in my dreams I was always either
walking fast or running, if my dreams start reflecting that I will feel
confident in my chances for cure or at least a big improvement. Took a
long soak in Epsom Salts today. Seems my feet are trying to turn again,
still not as bad as it was. Got very sleepy about 6PM.Taking the Nat
Mur 1M tomorrow.
Sat Aug 8 2009. Slept very late today and got up with a bit of a
headache (felt stiff in base of skull) and sinuses were very blocked
(couldn't get much out when I blew my nose). Had some sneezing last
night before going to bed. Feet still not turning as bad. Stood up to
get in car and knees were locked and couldn't pick feet up so had to
sit back down and try again. Made a wet dose of Nat Mur 1M (Just in a
glass or water) and took a sip around 4:15 PM, started sneezing and had
to blow nose about 15 minutes later, still have a bit of a headache.
Intend to take two more doses from the same glass later (will space
them out), my understanding is that is called a split dose because it
is basically the same glass of the remedy.
Sun Aug 9 2009. Slept kind of late again today. Right calf was in a
cramp when I got up but it went away pretty quick. Headache was gone
but I still feel lightheaded. My wife said my face looked puffy so I
went and looked in the mirror and it does around my eyes (I'm hoping
it's the sinus congestion coming to the surface), will watch it and
see. Bladder got full but was able to hold it, felt uncomfortable but
at least I didn't leak. Realized today that my feet didn't seem so cold
when I went to bed (will have to watch that and see). Seemed to go to
sleep quicker without as much tossing and turning in bed. Right elbow
had a pain in it last night and outide edge or right hand just below
knuckle of little finger had a sore spot, elbow seems ok today and sore
spot in hand is still there but not as sore as last night. Legs still
very stiff.
Mon Aug 10 2009. Got up with some discomfort in right eye (sinus). Face
not as puffy today.Still have sore spot in right hand. Ears still
ringing very loud. Legs still weak and stiff and knees won't bend.
Remedies came today so started on the 3 remedies for two weeks, one
time tonight.
Tues Aug 11 2009. Woke up sleeping on left side (unusual), left arm
numb from laying on it and sore spot in left side of neck. Still have
sinus pressure (head feels plugged up). Sore spot in right hand still
there. Took 3 doses of the 3 remedies about 6 hours apart today. Ears
ringing but not real loud all the time, then again I guess I'm used to
it after all these years. Still couldn't stand well but did find myself
trying a couple of times.
Wed Aug 12 2009. Had some trouble going to sleep last night (covers
felt heavy, feet felt cold warmed up to the touch but still had
sensation of being cold, legs tingled). Woke up a little earlier, legs
felt a little tight. Maybe a little more ambitious? Still having
frequent urination. Left foot seems to be starting to turn again.
Thurs Aug 13 2009. Had trouble going to sleep again (foot would hurt on
whichever side I lay on), couldn't get comfortable on either side but
was a little easier to lay on right side. Nose felt plugged up but
nothing would come out. Toes on right foot very cold in bed. Took
remedies 3 times yesterday spaced about 6 hours apart. Inside of right
ear felt like a hair or something in it when I got up (tickling
sensation). Legs still stiff and feel weak. Ears ring constantly but
have periods when it doesn't seem too bad. Toes seem to have the
sensation they are pulling up. It wasn't much so I'm not sure but I
went for a ride on my ATV today and maybe it was a little easier to get
on and off plus my feet were easier to keep straight (usually they
always point out), again it wasn't much and I can't be sure.
Fri Aug 14 2009. Have found myself trying to do things that I had not
attempted for a long time (was standing picking something up last
night, my right leg gave out and I dropped it but just trying was
different). Seemed to go to sleep a little faster last night and was
having a dream when I woke up which is unusual. Nose is still plugged
up. No headache when I woke up today. Legs are still stiff and still
feels like feet are stuck to the floor when I stand.
Sat Aug 15 2009. Slept late, no dreams. Woke up with a sore low back
and neck feeling a little funny, no headache. Feet are turning again.
Mood is down a little with no real ambition so I have to will myself to
do things. Ears are ringing very loud.
Sun Aug 16 2009. Went to bed late and slept late today. Woke up
sleeping on left side. No dreams again. Stomach was sore when I woke
up. Went to bathroom about ah hour after getting up, helped the
soreness a little. Sinuses are still plugged up, ears still ringing,
have a sore spot in low back. Legs still don't want to bend and get
stiff sticking straight out. Feet not turning as bad so far today.
Mon Aug 17 2009. Went to bed late again but didn't sleep as late today.
Feet were very cold when I went to bed last night, even after warming
up to the touch had the sensation of being cold, lower legs stayed
cold, kept me awake for a long time. Ears still ringing. Got a sharp
pain in toes of right foot for a couple of minutes tonight.
Tues Aug 18 2009. Stayed up late again last night and slept till noon
today. Have been sleeping sound but still feel unrested when I get up,
very stiff. Always have a very bad taste in mouth in morning, I think
it's from sinus drainage. Get stomach cramps just about everyday,
sometimes pain, sometimes just pressure. My remedies have not arrived
yet, I did get confirmation that they shipped yesterday so maybe
tomorrow.
Wed Aug 19 2009. Up late again and slept late today. Seems I wake up
feeling more tired than I was when I went to bed, worse in the morning
and better at night. Low back was sore and right arm hurt from elbow to
just below shoulder. Legs still stiff and ears ringing, sinuses plugged
up and bad taste from drainage. Phosphorus came today so am taking it
three times today and skipping the three remedies, will start back on
them tomorrow.
Thurs Aug 20 2009. Took Phos 30 three times yesterday. Back on the 3
remedies today. Didn't lay down till 5:30 am and got up at 10:30 am.
Very stiff when I got up. Have some pressure to have a stool. Once
yesterday I did stand a little easier. Not sure but it may have been a
dream that I stood up and walked across the room. Legs have felt tight
and a hot sensation all day.Have felt pressure but no stool today.
Fri Aug 21 2009. Woke up with a sore back (low back, a little left of
center), sore stomach, left side low (no stool), bad taste in mouth and
sore right shoulder. Feet were just a little cold last night for a
short time then warmed up. No dreams that I remember. Lower legs still
feel a little tight. Stomach pain went away but pressure remained all
day, never managed a good stool.
Sat Aug 22 2009. Got up with a bad headache (base of skull, stiff
neck), could still function for the most part but was worse than I have
been getting for awhile. Stomach didn't feel well. gas, bloating,
pressure but no stool. Lower legs tight. Feet felt cold when I went to
bed last night, had trouble going to sleep and probably slept wrong
causing the headache today.
Sun Aug 23 2009. Headache wasn't going away yesterday so I laid back in
the recliner and fell asleep and didn't wake up for about 5 hours then
I couldn't sleep last night, at least the headache went away. Still
having stomach pressure and haven't had a good stool. Legs still feel
tight. Feet are turning today.
Tues Aug 25 2009. Yesterday back hurt and had headache all day. Woke up
today without a headache but neck feels out, back is starting to hurt
again, may be connected to the neck because I turned my head and felt
it in my back. Not moving much because of the back pain.
Wed Aug 26 2009. Woke up today on left side, neck and head hurting on
left. Back going into a spasm everytime I move. The pain is starting to
wear me down. Took Phosphorus, back still gets the spasms and eyes are
sore. Headache worse later in the evening. Taking Lathyrus before bed.
Thurs Aug 27 2009. Kept waking up with a full bladder last night,
urgent need to urinate. Stool yesterday before taking Lathyrus, mostly
liquid with stomach pain and a lot of gas. When I got up today had a
full bladder again, legs would bounce when I put feet down, legs would
get stiff and stick straight out and toes would pull up, feet still
turn but maybe a little less, didn't have the headache but still feel
some discomfort in neck, still have a little back pain but not as much
(probably 50% better). Back on the 3 remedies 3X a day. Took a dose of
Bryonia 200C for constipation etc. tonight.
Fri Aug 28 2009. Woke up today and the first thing I noticed was a very
loud ringing in my ears, more in the right ear which is the side I was
laying on, I did have a full bladder but didn't notice that right away
so I'm not real sure which woke me up. Last night I was getting a sharp
pain in stomach (low in left side). Had a stool before taking Bryonia,
didn't take that much pushing, very dark and smelled sour. Legs don't
seem as stiff as yesterday and feet not turning as bad so far today.
Had a pain in my neck a couple of times yesterday and again when I woke
up, pretty much a little left of center but no headache so far today
and eyes not sore so far. Had a stool tonight, almost as dark as
yesterday and still smelled sour but easier to pass than I'm used to.
Got a pain in right leg tonight for a few minutes mainly in the knee
and left hand felt like it was about to cramp.
Sat Aug 29 2009. Woke up with ears ringing again, not as bad as
yesterday but still loud. Got out of the car last night and legs locked
when I stood and couldn't pick feet up, had to sit back down and work
it out a different way. Sinuses blocked and bad taste in mouth when I
got up. Had a stool today, about the same as yesterday. Feet starting
to turn some and left foot hurting a little. Feet don't seem to be as
cold at night as they were before.
Sun Aug 30 2009. Slept late, ear ringing a little less today. Legs
weaker when I stood up. Legs bouncing some when I put my feet down,
Felt like left calf was about to go into a cramp but it relaxed.
Sinuses still plugged, slight cough with some mucous in throat, bad
taste in mouth. Got some stomach pains with gas tonight, stool was very
loose and dark.
Mon Aug 31 2009. Had trouble going to sleep last night, always have
trouble on left side and right leg and hip hurt laying on right side.
Got up today and legs felt weaker. Not much of a stool today. Sinuses
still plugged but no headache and back hasn't bothered me.
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