Hi,
I just joined this list, but have had serious muscle spasms for a
year and a half of my trapezeus muscle.
I was wondering how other "got" this? Injury? Illness?
I had a cervical fusion of c1/c2 and when I awoke in the halo, I had
this spasm problem.... and it's never gone away.
Thanks,
Suzanne
I came across quite by accident, that acetylcholine controls our
sweating...it is the part of our nervous system effected by the Artane
and the other anti-cholinergeric drugs. It is found at the synapse of
the nerves of the muscles at least because it is the acetylcholine that
is wiped out by the botox, and why it works on sweaty palms-
I did a questionnaire on the Usenet ASD, and found that some of us
perspire a lot--others do not perspire enough--I am in the latter group,
and have had close to heat strokes 3 times, one while on a scop patch.
I can not look up references right now
-- My Dad died this morning--he had a massive heart attack Mar 2 and was
in the nursing home for rehab. Just on line in a daze-
Sue
I do not take any prescription medications. I do take homeopathic plumbum but that would not cause the sweating. Does anyone else associate sweating with their medications?
Lee
I sweat a lot, only when I am in pain.
Lee
Bev <dudderar@...
David,
I don't post messages very often, but something you said caught my eye. You
mentioned that you heat up because of the muscle activity. I have told the
doctors since early after my diagnosis of cervical dystonia that when I do
any moderate + physical activity that my head sweats. I tried to do line
dancing one time and within minutes my head was dripping wet....very
embarrasing. So I quit doing any activity in public at all other than what
is necessary. I assume, if the muscle activity is causing this, the reason
my head sweats is because my problem is in my neck?? The more I've
questioned the doctors the more aggravated they seem to get. They say they
know of no reason for the head sweats. I think you may have answered my
question. Anybody else have this problem??
I'm on Artane, and I find that I overheat quickly and break into sweats. I
think it's more to do with the drug than the disease. Also, my wife is on
tegretol, for depression, and has the same problems with fluctuating body
temperature.
Dave Milton
Hi,
Strange case. Sounds like some form of brain damage alright, mostly a stroke. I have added my opinions about the symptoms and how they compare with dystonia. Dystonia was first found with the elderly. The other causes are a genetic disposition (mainly germanic), brain injury, drug induced, or suspicion of allergy of poison. So if it is dystonia those would be the cause.
I will research Sydenham's Chorea and get back to you.
My inputs are noted below in your message. I check here every night. Get back to us when you can John.
Best Wishes, Terry
Hi all,
Just joined up. I'm not sure if I'm in exactly the right place, but
this was the closest thing I could find.....
Evidently I'm quite the rarity, neurologically speaking. I was
tentatively diagnosed with Sydenham's Chorea in January after five
months of repeated visits to various doctors all over my home state.
I've read what literature is available on the disease, and I must
admit that I still harbor some doubts about this diagnosis. The
specialist in charge of my case also agrees that she "can't account
for" some of my symptoms, which include:
Muscle stiffness and rigidity
Involuntary movement of head, right arm, jaw, right side of mouth
Tremor on right side of body
Slowness of voluntary movement
Weakness in right side
Lack of balance/coordination
Lack of energy
Difficulty with speech, both forming the words and getting them out
Among others.
I've been getting around slowly with a cane since November.
Sydenham's is what is called a "Self-resolving" condition, or
something like that, which means it will eventually get better on its
own, usually in about six months. It has now been seven months since
this all started. Some diseases, such as MS, ALS, and stroke, have
been eliminated due to the fact that my MRI and EEG are both normal.
I have an appointment with the same specialist who diagnosed me this
coming Tuesday (03/26). She told me in January that if I were not
significantly better by March, she would need to do more tests and
discuss alternative diagnoses with me. She wouldn't speculate as to
what those might be, but I've gotten very curious since I'm not
significantly better. I have had periods of semi-remission, but the
symptoms always come back. I'm wondering if this relates to anything
you all have experienced. Your input would be much appreciated.
Thanks.
Cheers,
John
I have never used Seroquel but this is what mentalhealth.com says: Quetiapine (Seroquel), a dibenzothiazepine derivative, is an antipsychotic agent which interacts with a broad range of neurotransmitters.
The anti-psychotics are referred to as Major tranquilizers or neuroleptics, as opposed to the Minor tranquilizers like valium, ativan or buspar.
terry gong <tlgongtlgong@...
I am confused about Seroquel. I thought it was just another tranquilizer for the symptoms. It is even listed as a tranquilizer for mental problems.
Hi,
I am confused about Seroquel. I thought it was just another tranquilizer for the symptoms. It is even listed as a tranquilizer for mental problems.
Can anyone tell me the other uses. I understand the use for dystonia about altering the biochemistry of the brain. Can anyone explain the "biochemical" use they are getting at?
Terry
my email company has automatic virus scan it automatically discarded the
message, and
told me where it came from it was called pictures from my party
cindy
Well guys this is the second virus to hit us.
Specifically the attachment on the e-mail.
I was suspicious of the .pif format and saved it to disk and my Norton Anti-virus picked it up. Do not open the attachment just delete it. The e-mail is just a hackers virus with just enough human engineering to deliever the virus in the attachment.
Remember the first one? "Pretty Park". I hope no one gets the virus.
Terry L. Gong
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Related Page 1 | Related Page 2 | Related Page 3.
Elizabeth do you have a support group to help you. You shouldn't feel
alone. Tell me where you live and what cities you are close to and I
will find you a group. The Botox may be the best thing to happen to
you. Hang it there. YOU ARE NOT ALONE! Phyllis
Till my first botox shots..this is after 12 years of meds that don't
work, and did who knows what. I'm scared. Maybe I'm too old for this
and had it too long. I feel so alone.
Elizabeth
I know a ligament is bad..but I know you were scared. I am so happy
for you.
Elizabeth
Thanks Elizabeth and Lee,
Terry
Glad to hear it's not dystonia. Your ligament will heal. Maybe it was just a wake-up to stop the Prozac.
terry gong <tlgongtlgong@...
Hi everyone,
Got back from the doctor today. The news is it is not dystonia. But a ligament like my coach and psychiatrist thought.
The bad news it is a ligament. Meaning if I caught it early enough it may heal in a few months. Otherwise like ligaments they do sometimes not heal. The orthopedic doctor thought we caught it early (five days). Immobilized in a splint and hope it reattaches itself.
Sorry about the false alarm. And thanks for the support.
I discontinued the prozac as a precaution. And my psychiatrist agreed.
Terry
Hi everyone,
Got back from the doctor today. The news is it is not dystonia. But a ligament like my coach and psychiatrist thought.
The bad news it is a ligament. Meaning if I caught it early enough it may heal in a few months. Otherwise like ligaments they do sometimes not heal. The orthopedic doctor thought we caught it early (five days). Immobilized in a splint and hope it reattaches itself.
Sorry about the false alarm. And thanks for the support.
I discontinued the prozac as a precaution. And my psychiatrist agreed.
Terry
Here is one list of drugs from DMRF:
[INLINE]
[INLINE]
[LINK] [LINK] [LINK]
[LINK] [LINK] [LINK]
To view specific content on this page, click on a category above.
[INLINE] Medication treatments may lessen the symptoms of pain, spasm, and abnormal posturing and function. These treatments have differing mechanisms of action, so benefits and side-effects may be difficult to predict. One drug may work for one patient and not for another. Sometimes the benefit is only short-lived. The treatment of dystonia must be tailored to the individual patient.
There are several possible categories of medications used in the treatment of dystonia:
Anticholinergics
Anticholinergics include such drugs as Artane (trihexyphenidyl), Cogentin (benztropine), or Parsitan (ethopropazine) which block the acetylcholine. In most people the dosage is limited by central side effects such as confusion, drowsiness, hallucination, personality change, and memory difficulties, and peripheral side effects such as dry mouth, blurred vision, urinary retention, and constipation.
Benzodiazepines
Benzodiazepines, such as Valium (diazepam), Klonopin (clonazepam), and Ativan (lorazepam) block the Gaba-A receptor in the central nervous system. The primary side effect is sedation, but others include depression, personality change, and drug addiction. Rapid discontinuation can result in a withdrawal syndrome. Some dystonia patients may tolerate very high doses without apparent adverse effects.
Baclofen
Baclofen (Lioresal) stimulates the Gaba-B receptor. Intrathecal (spinal infusion) forms of Baclofen are also available.
Dopamine
Some patients with primary dystonia respond to drugs which increases dopamine such as Sinemet (levodopa) or Parlodel (bromocriptine); however, many patients respond to agents which block or deplete dopamine, such as standard anti-psychotics like Clozaril (clozapine), Nitoman (tetrabenazine), or Reserpine.
Back to top
Can you explain how you start a person on a new medication?
Generally, a person starts on a medication at a low dose and slowly increases them. It may take weeks to months to undergo an adequate trial of one medication. Drug trials require tremendous patience in deciding whether one medication will work or not.
It is important to stay in contact with your physician because of the risk of the side effects and to report on how the trial is going.
During a drug trial, you may have to wait at a certain dose level or slowly taper off to discontinuation depending on the severity of side effects. Remember there is no "magic level" which you must obtain. Some people will experience benefits at a relatively low dose without side effects while others will require higher dosages. This is the reason physicians slowly increase the medicine because should you have benefits at a level that is acceptable, then that will probably be your level.
Overall, medication benefits between 40-60% of the dystonia patients, but medications have dose limitations because of side effects. Some reasons for medication failure is the lack of benefit and the occurrence of side effects. Other reasons include inadequate trials, not all possible medications tried, too many medications at one time, rapid increase in dose, or abrupt discontinuation.
Back to top
What are the effects of these drugs on longevity?
The medications that are used for dystonia do not shorten life expectancy and can be used, as far as we know, indefinitely. The side-effects may force us to reduce them, but the side-effects are reversible.
Back to top
What can be done for patients with drug-induced dystonia? Can it be counteracted?
There are several types of dystonia that can be induced by drug. One type is called an acute dystonic reaction and manifests itself as a dystonic state resulting after a one-time exposure to a medication. The medications that are most likely to induce dystonic reactions are the so-called neuroleptic drugs which have as a common mode of action to block the effects of the neurotransmitter dopamine in the brain. These reactions are generally self-limited but can be quite frightening. Acute dystonia induced by anti-psychotic or anti-emetic agents may be relieved by intravenous Benadryl (diphenhydramine), anticholinergics, or benzodiazepines.
Another type of drug-induced dystonia is called tardive dystonia. Tardive dystonia is produced by the long-term ingestion of drugs such as neuroleptics. The more common type of tardive syndrome is tardive dyskinesia wherein the movements are generally quick movements without sustained postures. Tardive dystonia is similar where many of the movements involve sustained posturing. It is generally considered to be a severe form of tardive dyskinesia. Tardive dystonia, induced by anti-psychotics or anti-emetics may be treated by withdrawal or the offending agents or by anticholinergics, benzodiazepines, baclofen, or clozapine; however this condition may be relatively resistant to treatments.
Tardive dyskinesia and tardive dystonia are very difficult to treat. Once initiated, they can be life-long problems although it is possible that they may spontaneously remit. There are a variety of therapeutic programs that have been suggested to be useful for treatment of tardive dystonia and while some are clearly successful in some patients, there is no therapy that is so uniformly successful that it might be considered a standard of care. Patients who are affected by tardive dystonia need to work closely with their doctors to try to find a successful regimen.
Back to top
What drugs can cause tardive dystonia?
Drugs belonging to a class called "dopamine receptor blocking agents," also referred to as "neuroleptics," can cause dystonia. The following is a list of such drugs that can cause dystonia (trade name listed in parenthesis): Acetohenazine (TindalŽ), Amoxapine (Asendin), Chlorpromazine (ThorazineŽ), Fluphenazine (PermitilŽ, ProlixinŽ), Haloperidol (HaldolŽ). Loxapine (LoxitaneŽ, DaxolinŽ), Mesoridazine (SerentilŽ), Metaclopramide (ReglanŽ), Molindone (LindoneŽ, MobanŽ), Perphanzine (TrilafromŽ or TriavilŽ), Piperacetazine (QuideŽ), Prochlorperzine (CompazineŽ, CombidŽ), Promazine (SparineŽ), Promethazine (PhenagranŽ), Thiethylperazine (TorecanŽ), Thioridazine (MellarilŽ), Thiothixene (NavaneŽ),Trifluoperazine (StelazineŽ), Triflupromazine (VesprinŽ), and Trimeprazine (TemarilŽ).
terry gong <tlgongtlgong@...
Is prozac on the no-no list. I recently switched from paxil to prozac.
Terry
Dear Terry: I'm sorry to hear the dystonia is back. Are you under unusual stress, to bring it on? Take good care. Lee
terry gong <tlgongtlgong@...
Its me the one in remission. It may sound insane but I really am. Dystonia came back. The ring finger on my right hand has curled up for the third day now. I know it sounds small, but it can strike any part of my body. Think of me.
Thanks, Terry
I have a list of no-no drugs here in front of me. To answer your
question, Prozac is on the list as causing dystonic reaction or
dystonia. We each should avoid them except when a physician has
knowledge of the treatment for dystonia. i think the website for the
list of drugs is:http://www.dystonia-support.org/drug%20list.htm
Phyllis
Its me the one in remission. It may sound insane but I really am. Dystonia came back. The ring finger on my right hand has curled up for the third day now. I know it sounds small, but it can strike any part of my body. Think of me.
Thanks, Terry
Is prozac on the no-no list. I recently switched from paxil to prozac.
Terry
<<Both doctors made rather vague remarks about it being related to a drug I had just begun
taking (5 days) called Neurontin. I stopped the Neurontin, but it has now
been almost 3 weeks since it began, and I am getting worse, not better.
I thought Neurontin was a drug to help with the symptoms of Dystonia, not to cause them. Along with other medication, I take Neurontin.
Cyndi
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Hi everyone! I have not been doing well. In fact, I am a whole lot
worse in spite of my doctor's best efforts. The doctor is
considering a baclofen pump for me. I am hesitant to do anything
surgical but given the fact that my breathing is affected by the
dystonia spasms in my neck I cannot really be picky as something
needs to be done. So, if any of you have personal experience with
the baclofen pump I'd love to hear it!
Thanks in advance,
Veronica
Have you contacted the Dystonia foundation? Maybe there is a support group in your area. The important thing is having a good neuro. They can steer you to the right treatments.
janissa@... wrote:
I'm Emily -- new and very glad to have found a dystonia group.
I am also very confused about dystonia. I was diagnosed with it in the ER
when it first began; my neurologist confirmed that diagnosis. Both doctors
made rather vague remarks about it being related to a drug I had just begun
taking (5 days) called Neurontin. I stopped the Neurontin, but it has now
been almost 3 weeks since it began, and I am getting worse, not better.
I fit the symptoms, yes. I also have fibromyalgia and Sjogren's syndrome
(dry mouth and eyes). I am still currently taking Avalide, Catapres (blood
pressure both), Vioxx (fibro; started this about 3+ weeks ago), Paxil and
Klonopin for anxiety and depression, and Desyrel at night for sleep.
I'm looking for advice because none seems to be forthcoming from any of my
doctors. I am experiencing all the dystonia stuff -- spasms all over my
body, legs like wet spaghetti, ankles constantly turning in or out, no
awareness of my feet, foot drop, tremors from head to toe. My knees are
especially weak: I can only lock them in order to walk, and if they give
out on me I'm a goner. I've fallen a great number of times, including once
yesterday at my parents' house and three times the day before at my own
house and at the hospital.
I have a whole lot of questions, and any advice would be tremendously
welcome. How long can this last? If this is a medication reaction, why
has it not stopped since all the Neurontin cleared my system? IS this
dystonia or may it be something else? My parents are getting a walker and
a wheelchair for me tomorrow, so that I can be at least vaguely
mobile. I'm on indefinite medical leave from work.
Please, if anyone can give me advice or suggestions, I would be so
grateful. Thank you so much in advance.
When I was having injections in my neck, the doc said that the reason I had so much pain was because she had to "rip through" muscle fibers. One of my most active nerves was very deep in my neck. Of course, those muscles were temporarily aggravated.
"Terrence P. Urbanis" <tpu@...
I had my quarterly Myobloc shots yesterday. When your Dr. indicates, "that the B does sting a little", I have to wonder if he thinks he's some kind of poet and don't know it! (Ali: Float like a butterfly and sting like a bee.) With me, the pain and aggravation is severe. It's the needle that aggravates me. If done right, the Dr. jabs that nasty needle in as far as it will go all around the neck to get into the neck muscles which need deadening. I really don't know if it is the needle that hurts or the Myobloc being injected. It is far worse than the dentist giving a shot since good dentists have techniques which helps disguise the act of penetration. The efficacy of my shots only last, at the most, two months. It takes a week to 10 days for the shots to take effect and the efficacy ends after about two months. I had taken Botox "A" for quite some time and I guess I have had the Myobloc ever since it was generally available. I am not aware of my having any adverse
effects from either the "A" or "B" except the "A" eventually failed to provide any worthwhile relief after a while. I just don't know whether using an electrified needle, the act of penetration of the needle or the injection of the Myobloc is responsible for the pain and unpleasantness. I had localized pain with the "A"; it's a tough call. Use the search engine www.google.com and search for Myobloc. You can find some interesting literature from both the FDA and Elan as well as other peoples contributions. I have to still take Artane and Klonopin, backed up by Vicodin and Vioxx/Voltaren for localized neck pain control. I guess I am of the opinion that if your Dr. doesn't provide a lot of pain injecting Myobloc all over your neck then he isn't doing the job correctly. It sure feels good when he has finished.
Howdy --
I'm Emily -- new and very glad to have found a dystonia group.
I am also very confused about dystonia. I was diagnosed with it in the ER
when it first began; my neurologist confirmed that diagnosis. Both doctors
made rather vague remarks about it being related to a drug I had just begun
taking (5 days) called Neurontin. I stopped the Neurontin, but it has now
been almost 3 weeks since it began, and I am getting worse, not better.
I fit the symptoms, yes. I also have fibromyalgia and Sjogren's syndrome
(dry mouth and eyes). I am still currently taking Avalide, Catapres (blood
pressure both), Vioxx (fibro; started this about 3+ weeks ago), Paxil and
Klonopin for anxiety and depression, and Desyrel at night for sleep.
I'm looking for advice because none seems to be forthcoming from any of my
doctors. I am experiencing all the dystonia stuff -- spasms all over my
body, legs like wet spaghetti, ankles constantly turning in or out, no
awareness of my feet, foot drop, tremors from head to toe. My knees are
especially weak: I can only lock them in order to walk, and if they give
out on me I'm a goner. I've fallen a great number of times, including once
yesterday at my parents' house and three times the day before at my own
house and at the hospital.
I have a whole lot of questions, and any advice would be tremendously
welcome. How long can this last? If this is a medication reaction, why
has it not stopped since all the Neurontin cleared my system? IS this
dystonia or may it be something else? My parents are getting a walker and
a wheelchair for me tomorrow, so that I can be at least vaguely
mobile. I'm on indefinite medical leave from work.
Please, if anyone can give me advice or suggestions, I would be so
grateful. Thank you so much in advance.
Warm wishes,
Em
Scientifically there is not much difference. Just as there are different species mice, their are different strains of botulinum. Of the tens of strains this is the second strain. It is not as well known as the A strain is why it is the second choice.
As with any new drug their are unknowns, but they have years of trials so they know enough. And as with any drug each persons reaction is different. So as always proceed and stay in touch with your doctor.
Personally I would.
Terry
I had my quarterly Myobloc shots yesterday. When your Dr. indicates, "that the B does sting a little", I have to wonder if he thinks he's some kind of poet and don't know it! (Ali: Float like a butterfly and sting like a bee.) With me, the pain and aggravation is severe. It's the needle that aggravates me. If done right, the Dr. jabs that nasty needle in as far as it will go all around the neck to get into the neck muscles which need deadening. I really don't know if it is the needle that hurts or the Myobloc being injected. It is far worse than the dentist giving a shot since good dentists have techniques which helps disguise the act of penetration. The efficacy of my shots only last, at the most, two months. It takes a week to 10 days for the shots to take effect and the efficacy ends after about two months. I had taken Botox "A" for quite some time and I guess I have had the Myobloc ever since it was generally available. I am not aware of my having any adverse
effects from either the "A" or "B" except the "A" eventually failed to provide any worthwhile relief after a while. I just don't know whether using an electrified needle, the act of penetration of the needle or the injection of the Myobloc is responsible for the pain and unpleasantness. I had localized pain with the "A"; it's a tough call. Use the search engine www.google.com and search for Myobloc. You can find some interesting literature from both the FDA and Elan as well as other peoples contributions. I have to still take Artane and Klonopin, backed up by Vicodin and Vioxx/Voltaren for localized neck pain control. I guess I am of the opinion that if your Dr. doesn't provide a lot of pain injecting Myobloc all over your neck then he isn't doing the job correctly. It sure feels good when he has finished.
Hi all,
I need some opinions. My neurologist wants me to try the new strain
of Botox B "MYOBLOC" for my cervical dystonia. I did have one
injection a year ago of Botox A and did fine with it, other then I
did experience the trouble with swallowing. My only hestitation with
the Botox B is that it is pretty new on the market, so I want to get
some feed back from others who have use it as to the side effects,
and if it worked as well as the Botox A, My Doctor did say that the B
does sting a little.
I would be gratefull to here back from anyone that can help me to
make this decision. I see my neurologist next week.
Thank you very much,
Mary Ann
Please unsubscribe. Thank you.
i have used klonopin with no success i have generlized dystonia for 17 yrs now i use botox with great success used botox a for 8 yrs now using botox b for about 6 mts only do the botox with the emg machine to make sure they hit the right spots
good luck
ellie
I've been taking low dose Klonopin for over 10 years now, and felt it
wasn't working anymore. I have CD and quit it. Doctor gave me
Neurotin and Visteral instead.
Did I ever find out how excruciating dystonia could be. My chin was
literally glued to my clavicle, and between the pain and the stress,
I gave up. Someone told me I should have stuck it out, it would have
gotten better.
But I did go back to the Klonopin, and at least have some of my neck
mobility back. No cure. But it seems I can handle the anxiety and
pulling, and the pain has lessened.
Anybody else try to, or stop Klonopin?
Elizabeth
My primary physician is a homeopath. He prescribes homeopathic medicines for me, as needed. You can get more homeopathic information at www.homeopathic.org
Or e mail me, if you have specific questions.
Lee
pbusk@... wrote: Perhaps I missed your total homeopathic theraphy. Could you tell me
what treatments/herbs/techniques you are using. I am eager to see if
they might work for me.
This only works for things that the insurance normally covers but are not formulary or you need too many visits. My policy specifically excludes alternatives.
I only took one day of Artane and had heart palipations that scared me
not to take any more.
But if the Artane works for your neck then there are other
anticholinergics to explore.
When I was at the symposium at Biloxi in Nov 2000-- I went to the
restroom and there was a pretty young woman in there who had gathered a
crowd. She was a teacher and had almost lost her job as I had. But her
doctor tried Kemadrin and she looked symptom free. She said it was like
Artane without the side effects.
Another kind can only be gottten in Canada and I can not think of the
name of it - will find it if anyone is interested.
The last is the "scop" patch which is a 1 mg patch for nausea used
behind the ear--and has worked well on blepharospasm and some ST...
Sue
Steve...In the process of doing that at present. But then he also wrote
a prescription for a therapeutic tub also and they denied it. He tells
me they don't want my business because I cost them too much. So they
will deny everything I ask for other than standard drugs. They hate the
fact that my drugs cost about $3000.00 at the drug store and yet I pay
about $45.00. They fuss every time my drs. nurse phones in a new
script.
Phyllis
Ask your doctor to write a letter to your insurance company.
Stephen D.Schiavo,Jr
sschiavo@...
Perhaps I missed your total homeopathic theraphy. Could you tell me
what treatments/herbs/techniques you are using. I am eager to see if
they might work for me.
Phyllis
Homeopathic medicines are very, very diluted natural substances. There is no problem with interactions. Herbal and Chinese medicines are full-strength herbs and you need to use caution. With any medicine, you should get professional help, such as a homeopath or Oriental medicine practitioner.
One website that goes over interactions is http://www.i-care.net/herbdrug.htm
It is VERY frustrating that insurance won't cover alternative medicine. My homeopath greatly reduces his rates for me but it is still a big budget buster. And I don't want to give up my health insurance. The insurance should be glad that I am not on the NINE meds I was on, before I started homeopathic treatment.
For those of you with Powerpoint. Here is a Christmas Presentation.
Terry
i just let a joke get sent. I had a picture I hadn't removed yet I was
playing a joke on a friend. I regret i accidentally sent it. Now I'll
take the time to remove it. So Sorry.
To All,
Show your support to our Armed Forces by e-mailing them.After all
they are fighting for our Right to be Free.This Holiday season is going
to be a tough one on the victims friends and family of 9-11-01 and our
Armed Forces.Show your support.
Steve
Stephen D.Schiavo,Jr
sschiavo@...
Artane is a parkisonian symptom reliever. It affects the nerves and the brain to provide relief to the muscles which you cannot control. It impairs the nervous system to lessen the parkinsonian symptoms of the muscles (stiffness, contractions, tremor). Just the muscle symptoms, not the dystonia itself.
The effects are different for each person. But if the side effects are worse than the relief of dystonia, stop and contact your doctor.
Slurred speech and mental confusion are a side effect. But if the dystonia is unaffected, stop and contact your doctor.
Artane is the first answer any neurologist will give you. It is safest for your doctor, but it does not always work. It is a parkisonian medication. There are other tranquilizers, muscle relaxers, seizure medication. I think this is a case of any neurologist will treat you, but is he an expert?
Terry
Thanks for sending this around. My Son of who I am very proud chose to
protect our liberty and freedom.
This could be for him and his mates.
Lift a glass for the Royal Scots Guards, in an unknown location in the
Middle East, and pray for their safe return.
Charles
The same to everyone. It is time to remember.
Terry
To All,
Have a Happy Thanksgiving!May your day be filled with friends and
family.
Lets not forget those who fought and still are fighting so we may
have this right to enjoy our Freedom.Remember 9-11-01 victims!
Steve
Stephen D.Schiavo,Jr
sschiavo@...
A friend sent this to me.
Stephen D.Schiavo,Jr
sschiavo@...
Started a group in here called Singles with Dystonia. That's all the
divorced people too...I know I'm not the only one...
Hope you find time to post, SingleswithDystonia..here at
Veronica,
Not and expert in chairs but unless you buy a vehicle to move this several hundred pound chair, you will have to buy more than one chair. One for work, heavy powered, that you can leave there during the day. And one for other occasions, lighter, able to lift into car.
Best Wishes, Terry
Hi guys, I'm not sure if this topic has been thoroughly covered on
this group, but I need some advice in this area. My dystonia is
progressing slowly but steadily in spite of the current meds and it
is time for me to begin to think about buying a power chair.
Anyway, for those of you who use them, how do you recommend to start
shopping. I need something that could be put into a station wagon (I
drive a Subaru Outback). I can actually stand and lift some things
so the walk from the back of the car to the seat is not a big problem
(I am a good "shuffler" and can use the car for support), but I can't
lift heavy weights, so whatever I use would need to be fairly light.
I've looked on-line and seen some that take apart, but it doesn't
look that easy. Also, some of the ones that come apart look like
they are very heavy. Any advice would really be welcome and thanks
again in advance.
Veronica
I could not read it because of the gray backround.Also you put the
American Flag backwards,stars are suppose to be on left side to the
viewer.
Stephen D.Schiavo,Jr
sschiavo@...
Veronica,
I love your plan. A long look around with your union, they are part of your guaranteed employment right now. Coupled with move anywhere in your school district, with seniority carries a lot of weight. Because you are inside the door already, so why look any further.
Terry
Thanks Terry,
I do have a plan...now I just need to find a moment to call my union
which I will not do from work for obvious reasons. I need to find a
moment when I get off early enough to make the call before they stop
answering the phone at 4:30 which is no easy feat. Hopefully I'll
get time this week, if not certainly by next week. I do not
personally know any other teachers with disabilities. At the
elementary level that is a rare thing. Not unheard of in high
schools, but few people can maintain the physical demands of working
with young kids when they have a physical disability. If my voice
worsens, I will have to go to my "plan B" of finding a different
job.
I don't know of specific groups to help people with disabilities with
compliance issues in my area. I'll look on-line. My hope is that my
union can help. After all, that is what my huge union dues are for.
If they are not of any use I may have to go outside. The thing is
the school system I work for is very large and you have to understand
the ins and outs to understand all the ramifications of everything.
Thanks!
Veronica
keep happy and healthy changing within your profession or within your
school district, or even your union area needs to be looked at.
Because you have doubt about where you are now. So develop your
options rather than wait.
way to go. There must be a local disability group around someplace
who is familiar with compliance problems in your area. I have met
hundreds of disabled people. Meaning other than dystonia. So think
of the other disabled or handicapped in your area, maybe they can
help or support you in your school districts compliance problem.
Dear Phyllis,
What a great idea! That had not occurred to me. I need some real
basics at school too. I need a ramp built to my trailer pretty
badly. Today my walking is worse than it has been for a long time
(the temp dropped significantly over night--could be that or just
random) and I cannot use my crutches because of hand/arm spasms. I
could use my rollator but my trailer does not have a ramp!!! I have
no plan yet and not sure what I'll do for Monday. I'm thinking about
just showing up with the rollator if I still need it on Monday. I've
had to do battle with the school system for accommodations before
because they would not acknowledge me as a person with a disability
for the longest time due to no diagnosis. That will not be a problem
anymore, hopefully! Funny thing is that my trailer should have a
ramp entrance. My principal has no say so on what I get and what I
do not get for the most part. I know that my principal would want to
do whatever she could to get me to stay as there is always a shortage
of experienced teachers. I work for a large school system where
every little decison is made by people who have never met me in a
bureaucratic office.
Thanks for your suggestion. I remember your name from having posted
a long while ago and I know you were helpful then too!
Veronica
Veronica,
One of my types of generalized dystonia is Spasmodic Dysphonia. I also
seem to be more affected in the summer months. But I always have my
days when it gets worse throughout the year, no matter the weather. I
never know how dystonia is going to rear it's ugly head from hour to
hour. I can tell you I have found that voice rest is important. Also,
if I take a dose of my medicine and sleep for a while, my voice is much
stronger again. I sometimes use heat, and sometimes cold. I think my
body let's me know what it needs. And I think that is what is happening
to you. In your discussion, you mentioned you did not want to quit
teaching. If you have problems talking in the classroom (which must be
completely taxing on your voice) you can ask for a head microphone that
will help. Your school system is by law, responsible for helping you
with your disability. This should help you by not over doing your
voice. I have a teacher in my support group who is doing that very
thing. So ask you principal for help, if he refuses, which I don't
think he will...then proceed to a higher lever, the assistant
superintendent of personnel at the school board. People with
disabilities have rights....educate them and use your rights that are
due you. Good luck and God bless, Phyllis
Hi everyone! It has been a while since I posted so I'll quickly
reintroduce myself. I've had mysterious symptoms for 2 years, been
to the usual thousand doctors (well...may not a thousand but sure
felt like it). And after a hospitalization when my spasms got so bad
I could not swallow, I finally have managed to get an appointment
with a WONDERFUL movement disorder specialist and Johns Hopkins
(lucky me I live an hour away).
Well, he diagnosed me very quickly with hemi-dystonia (right side)
with generalized features. Meaning my right side is mostly affected
but my left is occasionally affected too. I walk with crutches but
should probably be using a wheelchair (powered one due to hand
involvement) or a scooter but I'm not mentally prepared for that
yet. Today I am literally falling over in my house, but most days I
can stand just not move (mine is movement induced). I also have
spasmodic dyphonia which fluctuates in severity.
Here are my questions:
I've been started on levodopa a low dose to go up to a very high
one. How long does it take to have an effect if I have the dopa-
responsive kind of dystonia?
My spasmodic dysphonia gets much worse in the heat. Most of the time
you can only tell I have a problem with repetitive sounds or if I
talk a lot, in the heat, however, my symptoms rapidly get worse to
the point where I cannot speak at all! If I get into air
conditioning or have something cool to drink or ice chips I can help
get my voice back. I have not read about this anywhere! Does anyone
else have this symptom?
My last question is about working. I have very minimal
accommodations where I work teaching fourth grade. I am often barely
functional but I really want to continue working teaching kids. If
there is anyone else out there with dystonia who is teaching and has
some of my same symptoms I'd love to hear any tips of the trade!
Thanks so much in advance. I've spent so much energy trying to find
out what I had that now I have a mixture of relief and fear. This
group has helped so much already since this is where I was told to go
to Hopkins because they are so good there with the dystonias. I
cannot remember exactly who it was who told me that, but whoever it
was, thanks sooo much!!!!!
Veronica
kelly,
thanks for responding to my message. it does sound like a stroke but
nothing permanent after that. i slept for 48 hours and my daughter also
named kelly is a speech pathologist. she has seen me have one of these
before and it scared her to death. she did say she felt for certain it
was a seizure with extreme need of sleep. there is also a form of
dystonia called paroxysmal and dyskinesia. i fit many of the same
symptoms. i see my doctor this week. i hope he can shed some light on
this. thanks for writing and i hope i get responses from others who
have some idea on what is going on. sometimes i think people with
dystonia have more answers than the doctors. you were the first to
reply. i had another one this past weekend. phyllis
Did anyone ever have financial trouble to be able to see a doctor?
I have. Ever think about helping to raise money for people who can
not afford to get better? If you want to talk about it write
keeknap@...
Dear Phyllis, reading your letter broke my heart.I dont know how
religious you are but you will be in my prayers from now on.It sounds
as if you were having a stroke . How did you feel after that. I mean
was your speach slurd at all? what does your doctor say?
kelly
keeknap@...
I am raising 2 stepsons alone, both with special needs. I also took care of my disabled ex husband. They are his bio kids that I am raising. I feel that you are judging me, by your "get a grip" comment. I know what life is about and it is not about being a caretaker 24/7 for the rest of my life. If you read what I said, I am not interested in a group with just single dystonia patients because I prefer a broader view.
It is not puzzling at all to me, not to want to take on another person who needs my help. I need help already and I am stretched way too thin. I don't feel that your comments are compassionate and understanding.
somebody ill, because you have to help them? Let's get a grip, that's
what life is about.
I feel you have to accept people for themselves, not what's on the
outside. We are all human with real feelings, that sometimes get in
the way with people judging us, because they have never heard of
dystonia.
It was very easy for me, when I was married, he knew the problems
with dystonia. But as I said, I think there are a whole lot of people
that are single, divorced that could use some feedback and love. And
first hand experience is the best. It really puzzles me why you think
you think going out with somebody "ill" and helping them is a problem.
way above average intelligence, have a great sense of humor, it was
just something that happened. I don't believe in judging anybody.
Evreybody basically wants the same thing.
with dystonia. I don't really enjoy going out with men who are also
ill. I end up having to help them. Of course it is important that
they are compassionate.
somebody ill, because you have to help them? Let's get a grip, that's
what life is about.
I feel you have to accept people for themselves, not what's on the
outside. We are all human with real feelings, that sometimes get in
the way with people judging us, because they have never heard of
dystonia.
It was very easy for me, when I was married, he knew the problems
with dystonia. But as I said, I think there are a whole lot of people
that are single, divorced that could use some feedback and love. And
first hand experience is the best. It really puzzles me why you think
you think going out with somebody "ill" and helping them is a problem.
way above average intelligence, have a great sense of humor, it was
just something that happened. I don't believe in judging anybody.
Evreybody basically wants the same thing.
Elizabeth
I am divorced but really have no interest in a group of singles with dystonia. I don't really enjoy going out with men who are also ill. I end up having to help them. Of course it is important that they are compassionate.
There are many types of therapies and medicines that could benefit us greatly. Unfortunately, there is a political process in determining who gets research money and who doesn't. Woe to those who go against the AMA and the pharmaceutical industry.
I was wondering the same thing. I am sure that if it
would help ALS and Parkinson that it would also help
dystonia.
Lori
Reports I have heard from different sources, including our national
headquaters in Chicago (I believe) say the stem cell research would
benefit of greatly. I think I even wrote to our Congressmen asking them
to support the bill. It was an effort from the dystonia support group
leaders. I know when I go to symposiums on dystonia, I find lots of
people who have Parkinson's there are well. Both Dystonia & Parkinson's
come from the Basal Ganglia.
I am sorry I missed the movie.
Phyllis
Did anyone else see the movie Sunday night? It was a true story about
a woman with ALS and the stem cell research going on now. Absolutely
fasinating. At the end it said it was a good possibility for people
with MS, Parkinsons---so why not dystonia?
Also I was thinking of starting a group for "Singles with Dystonia"
Anybody got any thoughts on this? It's a whole different world when
you are not married.
Hope everybody is doing OK.
Elizabeth
I forgot to give the toll free number-1-888-NYMUSIC.It is amazing
to watch NYC Finest actually enjoying,laughing,smiling,hugging one
another for most the first time since Sept.11.So VH1 is doing two
things,getting money and giving all NY finest a break from the
stress.Actors and musicians got together and gave NYC and the country a
well needed break from stress due to happened to our country on Sept.11.
They have promised through the Robin Hood Foundation that 100% of
money donated will go straight to the NYC police,fire fighters,ems
workers,and the victims families.
I know millions have been already raised but millions more are
needed.NYC still has homeless families due to Sept.11.So they need us
right now!
Stephen D.Schiavo,Jr
sschiavo@...
Hello Gary, I like your page. It looks really good and I can hear the
birds. NICE. Yes, what a day to see Ricky Craven finally win one.
Last year and this year we have seen so many different drivers in
Victory Lane. I think that is what makes this sport so interesting.
There are 43 drivers out there all with the talent to win races, they
just need the right car in their hands. You're right, Rusty Wallace had
one thing in mind, that was himself and then getting his brother, Mike,
in the Mobile 1 car. But Jeremy has been trying to break contract so he
wasn't exactly fired like the reports said. It was a mutual parting and
I'll not disclosed but believe me Jeremy can take of a lot of time off
with the contract settlement from his $5 million contract. Now he is
free to race with a team who doesn't want him to drive for research and
development but to be in contention to run up front and win races.
Yep...silly seaosn is here.
Take care, Phyllis
Right now VH1 is putting on a benefit concert for NYC
finest,Police,Fire Fighters,EMS Worker,and Victims.Most of these people
lost loved ones on Sept.11.Give what you can because they gave their
lives for us!The web site is www.helping.org.
Steve
Stephen D.Schiavo,Jr
sschiavo@...
Hello Phyllis, I hope you and your family are doing well. I do have a computer but believe me I'm no expert by any means. I click on to format on the tool bar then I click onto font and it will give the the options of font type,style, size and color. I click onto color and I pick out the color I want to use then I can go back and click onto format and click onto background and click onto a group of backgrounds that are already in the computer. I also have a option to create any shade of color that I want to use and enter sound by clicking on sound. I really do enjoy your emaiIs with the pictures and sounds. I had Webtv and enjoyed it very much but it costs more than just having a internet connection so when lighting tore it up I never had it replaced. I hope this is helpful to those who have computers and if they need anymore infornmation I will be glad to help them. You have gotten my curosity up about Jeremy Mayfield but I guess its the beginning of the silly season
anyway. I'm glad that Chris and Jeremy have such a good friendship because I know it can get pretty tough wanting to drive a race car but not having a ride. Tell Chris to tell Jeremy that I have missed him and look forward to seeing him back in a race car. I wish him the best of luck because he has tried so hard and is such a good race car driver. I feel he has the heart and talent to be a Nascar Champion in the future. I always felt that Penske Racing was going to be tough for Jeremy to drive with Rusty having the upper hand on this race team. I was glad to see Ricky Craven win his first race after all the injuries that he suffered through and setting out of racing for him must have been tough also. Talk about never giving up!!!!!!!!!!! He is a good example for people with Dystonia by never giving up FAITH and HOPE.
The one that threw me for a loop was "psychogenic". Meaning my illness was made in or genesis in the psychy. Meaning something about my mind over matter power caused this illness. I do not know how to do that, so how could I have had? It may have been all my mind, but it sure does hurt. Like paranoid manifestations they can seem very real.
But the same arguement was used against Padre Pio and his stigmata. That it was created by his mind.
It is a confusing arguement. But like allergy and poison, difficult if not impossible to prove.
Terry
After 11 years, I've found my umpteenth ignorant doctor. Moving from
NC to NJ, I thought maybe, just maybe, doctors were more "on the
ball" about dystonia up here.
I was referred to this specialist by my main doctor, and she came to
the conclusion this was "stress dystonia." I guess for the reason
that it becomes much worse after she throws my head back and forth.
Now that's what I call, ignorant.
She also told me there were very few people with dystonia in NJ. My
thoughts were, that they have been diagnosed by you or some other
nitwit, and you've made them ignorant about what is really wrong with
them. I feel so bad for people that have this and don't have the
correct diagnosis and must wonder, what is wrong with me?
So I will find another doctor that did take the class on movement
disorders, and passed the test.
So ignorance is all around about dystonia. But it's hard to pay
somebody $300 for ignorance, I'd just rather let the eveyday people
stare for free.
Elizabeth
I do try to educate people about dystonia. Sometimes I am just too tired or I don't want to deal with it. I am using all my reserves to get to the store. It is not a time when I feel like educating others. I just need a little courtesy.
Stephen,
I don't know you, have never met you and know nothing about you so I will
not make any rash assumptions about you.
I only hope that the following statement you made was a error in your
grammar.
Assume-You make an ass out of you and me :)!
Regards
Charles
Charles,
I have speech impairment which at sometimes it sounds like I am
drunk.So when people that know me,think I am drunk or high.The two
ladies that saw you assumed you drunk by the the way you appeared.
Assume-You make an ass out of you and me :)!
When I was a teenager I had gotten pulled by a cop.The minute I opened
my mouth I was hand-cuffed an was brought down to the police
station.I carry a note from my dr. stating that I dystonia which affects
my speech.
Stephen D.Schiavo,Jr
sschiavo@...
Hey Gary....do you have a computer. How'd you get that pretty color on
your screen. People in this group have been wondering about my
signatures. Tell them where your box is for color change and can you
add gifs/pictures as well. By the way Jeremy Mayfield is enjoying his
time off from racing. Glad to be away from Penske Racing. He and Chris
are spending a lot of time together. Look for the news on him sometime
in the near future. My lips are sealed...ha! My son would shoot me if
I told. A hint...he won't be driving a Ford....if things keep going as
they are now. Phyllis
Charles writes:
I have no problem with anyone who asks what is wrong with me if they
really are interested. I will gladly take the time to explain it all to
them and will even tell them where to get more information if they want
too.
My problem is with ignorant people.
To give an example, a few days ago I was walking down the street at
about 9h00 and two "ladies" were walking towards me when one said to the
other, look at that disgusting man, it's not even nine o'clock yet and
he is so drunk he can hardly stay on his two feet.
Those are the people I don't need in my life and I would not waste my
breath trying to explain anything to them. They are ignorant, always
have been, always will be.
Sorry for the rant,
Charles
<
Charles, I so understand your point of view. I get frustrated as well.
But what would put those "ladies" in their place is by telling them just
what is going on in your body. They would then eat humble pie....I
assure you of that. My dystonia being generalized has caused me to loss
weight because my muscles are depleting my body of calories at all
times. I am small and petite anyway. But then even from friends I get
this "you've lost so much weight". With that I simply say..."you would
too if you had a disorder than never let your body quit moving". They
usually stop dead in their tracks. I don't intend to humiliate anyone
but there is a point that I just have to get the upper hand of things.
Don't ever let anyone put you down by calling you a "drunk" again. Let
them put their foot in their mouths and maybe next time they won't be so
insensitive. I have cards from the Dystonia Medical Research Foundation
with a website and email for information. I can get you some to keep in
your pocket. You don't have to say a word other than I have
dystonia...and hand them a card. If you have a group you are a member
of they should have them as well. But I will be glad to send you some.
God bless you and all of us who suffer this horrid disorder. Phyllis
I have generalized dystonia since age 7 now 46.Had three
cryosurgeries at age 10,became an ocean lifeguard at 17,had a fall which
damaged my spinal cord at age 23,now back using a wheelchair for the
rest of my life.
I have been reading post from people who are tired about explaining
their dystonia to others.Isn't explaining your disability to other a
form of educating others?We are always complaining about the lack
awareness the medical field and the general public has about
dystonia.Yes,I know it gets frustrating and tired of saying the same old
story but we must never stop educating others about dystonia.
During the school year I give talks to kids in school about people
living with a disability.I also give talks to the Lions,Elks
clubs.Anyone willing to listen and learn,I will give a talk to.
Monday,I had a drs. appt..On my way back to van This man in early
20's parked right in front of a curb cut preventing me to get to parking
field level.Lucky I saw what store he went into and followed him.When I
caught up to him,I said do you know you are park in front of a curb
cut.He answer was "what is a curb cut"?At first I thought he was trying
to be funny but as I watched his face he had no idea what a curb was.He
moved his car right away and once he me wheel down it he realized what a
curb was.He came over to me and said he was sorry,he had never seen a
person use one before.He even asked me if he could help me get into my
van.
So yes I had to tell a story that I repeated over and over but
talking to him I just educated one more person.He even thanked me!The
same goes with educating others about dystonia.
Steve
Stephen D.Schiavo,Jr
sschiavo@...
III have no problem with anyone who asks what is wrong with me if they really are interested. I will gladly take the time to explain it all to them and will even tell them where to get more information if they want too.
My problem is with ignorant people.
To give an example, a few days ago I was walking down the street at about 9h00 and two "ladies" were walking towards me when one said to the other, look at that disgusting man, it's not even nine o'clock yet and he is so drunk he can hardly stay on his two feet.
Those are the people I don't need in my life and I would not waste my breath trying to explain anything to them. They are ignorant, always have been, always will be.
Sorry for the rant,
Charles.
Phyllis, I could not have said it better about explaining Dytonia to people. I meet a lot of new people every day on my job who are well educated until I say the word Dystonia. I feel it is my obligation to other people with Dystonia to spread the word. Dystonia has messed with my speech so as soon as I open my big mouth they know something is not well on the Homefront. I tell them if I begin to talk to fast or if they don't understand me to tell me they didn't understand what I said so I can repeat it until they do understand. I know it can be embarrassing and frustrating having to repeat yourself but I refused to let Dystonia win the battle over me being who I am. I don't push this information on anyone but most intellengent people begin asking questions because they have never heard of it and they want to be informed. I have told several people this week how to spell Dystonia because they wanted to look it up on the internet and learn what it is. When I first started
having problems I was sixteen years old and didn't want to talk to anyone about it because at the time my doctors never gave it a name until the early 90's. They just said that I had basil ganglia dysfunction. Also too much pride got in my way of wanting to be a "normal teenager" if there is such a thing. Today at 41, I look back and wonder how many people would have known about Dystonia if I had just taken the time to explain and share how Dystonia has affected my life. I don't condemn anyone on how they cope with Dystonia because it is very hard to live with but as long as I have breathe in my body and people are able to understand me, I will take the time and effort to explain and answer any questions people ask me. You were also dead on target about educating doctors because each case is different and what works for one patient will not work for the next person. If Dystonia patients don't promote their own cause and are not willing to help in research when will a cure
be found or a least better treatments. What will the next generation of Dystonia patients think about us as a group of people who sat around wishing for a better life but doing nothing to help teach the general public and doctors about Dystonia, because it will not go away by ignoring it. Most people think that I have had a stroke or MS until I educate them. Keep up the good work and may God Bless you Phyllis.
I grew up near the ocean, and something about the water, brings so
much peace and stillness in your life, that I always knew what the
most important things in life really were.
So glad you wrote that.
Elizabeth
It's me again. Getting around to all my emails. For Charles it's
building boats and sailing...for Bonnie it's horseback riding. WOW both
seem wonderful to me to be able to excape from the suffering. I would
love to do both but I love gardening and before I heard the word
Dystonia, my husband and I built an incredible English garden and patio.
We have two water ponds. Once holds many gold fish that are now large
enough to eat...but I'd better not catch anyone tyring to fish from my
pond...LOL. I enjoy my garden. I go there to pray, to listen and watch
nature...it is my sanctuary. Since dystonia I am not able to tend it
like I had wanted to but if you let weeds grow long enough they produce
pretty blooms. The ground cover keeps weeds out most of the time. When
we built it our children had both left home for marriage and college
life so we needed something to do in our spare time. It is peacful out
there.
As for the comments people give us such as days when my voice is so weak
from Spasmodic Dyphonia and my eyelids are weak or my head is drawn...if
someone asks me I simply get my chance to explain a disorder they may
and probably have never heard of. We have got to find moments and
chances to bring awareness to the general public and even more
importantly our medical professionals. They seem as in the dark as the
public does in treating and understand dystonia. Would all of you agree
to that? Phyllis
I'm a single mother and haven't had a date, since long before the divorce. My ex left because of my ST and inability to work. I was supporting the family. I have little time to socialize. When I have time, I just want to rest. Oh well, my day will come!!
Lee
Boatbuilding and sailing is what keeps me sane in an
insane world full of
people who keep asking " what is wrong with you" and
then don't really
listen to your answer.
Mostly they think I am mental or drunk but when I
build a boat or go sailing
the people around see what I an capable of and respect
me for what I can do,
they forget what is wrong with you. I like that
feeling and the way I am
treated as "normal"
Charles
Kathy,
Yes I can definitely tell you about the benefits of
using horses for therapy in disabilites of all types
not just dystonia.
Thanks to Terry and Jana for answering for me! :-)
We have been doing hay so have been busy and tired for
the past few days.
I could write a book on it, Kathy, so I will email you
privately if that is OK.
I know ya'll have heard me sing the praises of horses!
Bonnie in TX
"I may not walk too good but I sure can ride a horse"
I see a classical homeopathic physician. Each homeopath prescribes what is needed for the individual. www.homeopathic.org
Acupuncture is usually only effective if you have 10 or 12 treatments, during a 3 week period.
Lee
Bonnie Tereska <ccarabs@...
Could you explain what homeopathy you use that helps
you please?
I know I would be interested in hearing about it. I
also tried acupuncture (about 15 years ago) and it did
not work for me.
Terry,
I understand your point that there is no scientifc
proof that it works but my doctor explained it as
Western medicine and they have practiced it way before
there where medical schools for doctors to go to.
Obviously, he believes in its power of working.
I am so confused!!! :-)
Bonnie in TX
"I may not walk too good but I sure can ride a horse"
Steve,
Thank you, thank you! Well there is one of us that it
works for. I have talked to several people that also
says it works for them. They swear by the bracelets
and magnetic wraps.
I guess I should be keeping a tally; how many "no's"
and "yes's". LOL
Bonnie in TX (still confused about magnetic therapy)
"I may not walk too good but I sure can ride a horse"
Hi,
Could you explain what homeopathy you use that helps
you please?
I know I would be interested in hearing about it. I
also tried acupuncture (about 15 years ago) and it did
not work for me.
Thanks!
Bonnie in TX
"I may not walk too good but I sure can ride a horse"
hi folks,
I am studying therapeutic horseback riding in college.
I need to write a term paper on a disability and the effects riding would
be of using a horse for therapy.
has anyone on this list have any experience, pro or con, in this area?
any input would be greatly appreciated!
thank you,
Have a great day.
Kathy
littlebit@...
Ginger, the great thing about webtv is you have a signature box. In
that box you can add pictures, change colors of your backgrounds and
text, add music. Today I have a fall leaf if you can see it. And the
music is one of my favorites, the Theme from Forrest Gump (so cherry to
the ear...can you hear it). Autumn is one of my favorite times of the
year with the beautiful changing of the leaves. I live in KY and
tomorrow my husband and I head out with friends to the great Smokey
Mountains in Galtinburg, TN. This is the peak week for the fall foilage
there. I love the crisp mornings and the sun rising on the mountain
side upon the colors of reds that look like rubies shining, oranges and
golds that just bounce their color at you like shining gold. I always
try to find pictures that make people feel good and also let them know I
care about them. Life is tough living with Dystonia. Running a support
group has helped me deal with everything from a different prespective.
It takes my mind off me and puts it towards them. I must
admit...somedays like today life is very difficult.
By the way Ginger...if you find a place on your computer you can add
images let me know. If you discover this area...go off line from this
group, write me personally and I will send you things to add. Happy
hunting. When I received this message from you I had my signature box
on there with all my different codes. Bet you wondered what all the
mess was...ha! Well...those are different pictures I use from time to
time. I just turn them off with a (!) and use them again. Phyllis
I thought that was what the group was for, to listen, to help when we can
and to just be there.
Charles
I apologize for throwing my problems into the group. I should have
just written an email to myself. Terry, I spend most of my time
focusing on other people, thank you. And know there are a lot of
people less fortunate than I. After 11 years, I try to stay centered
on what's really important in life. Just get frustrated at times.
All of you take care,
Elizabeth
Focusing on what you CAN do, is very helpful. Even if all you can do today is breathe, that is something. It means you are alive!! I CAN BREATHE, is better than repeated what you are unable to do.
terry gong <tlgongtlgong@...
You sound tired Elizabeth. You are right thinking of what is wrong all the time is not healthy. They call it preoccupied with something negative. Making you negative.
You must also think of things you like, things that interest you, positive things, and people to name a few.
You sound tired Elizabeth. You are right thinking of what is wrong all the time is not healthy. They call it preoccupied with something negative. Making you negative.
You must also think of things you like, things that interest you, positive things, and people to name a few.
Take Care, Terry
I think I have honestly lost my tolerance to this disease. I'm tired
of explaining something that nobody has ever heard of. It's like, I
had a life, but am too old and tired of explaining what's wrong with
me. And then, even alone, you are just still fighting for your neck
to just please stop to let you sleep.
Elizabeth
I was at a NSTA symposium last year in California. I have a terrible
spasm in my neck. One of the vendors had beautiful magnetic jewelry.
It looks like a deep silver more like pewter only shiny. I wore the
necklace for awhile and it may have been my imagination but it seemed to
help the pain. I wanted to purchase it but it was very expensive. I
wished I had of had a money back guarantee but I don't think it did. I
do hear from other's with Dystonia that they work for them. If there is
a guarantee why not give it a try!!!! Phyllis
I was just wondering if anyone here has tried magnetic therapy. My
family dr. (who is wonderful!) has suggested this for me. My neck
spasms so bad when I lay down at night. It seems OK during the day;
like right now typing on the computer; but when I put my head on the
pillow to go to sleep it really starts jerking.
He shared with me a patient's story: a 70 year old woman that had
scoliosis and muscle spasms so bad that her left rib touched her
pelvis. He suggested the magnetic therapy and it helped her
tremendously. She was taking 3 heavy-duty pain killers a day and
with this therapy is down to just taking 1 darvocet before bedtime.
Now this is great! She used the magnetic bed pad. Now, I have
spoken with a church friend about this and her mother has back
problems also with spasms and she tried the same thing but it did not
help her. Well, we all know that what works for one person does not
work for another.
So I am just asking for another confirmation before I put up the
dollars it costs for these items.
Any input greatly appreciated!
Hope everyone is doing well. It has been a rough year for me but
ya'll that know me, know I bounce right back! :-) Alittle more
slowly this time, though.
Bonnie in TX
"I may not walk too good but I sure can ride a horse"
Kim,
Yes, I understand your fears. There really is no
"test" for cervical dystonia or any dystonia really.
My head started tilting to the right when I was 19
(now 45) so I have had 2 ruptured dics from it that
were operated on in' 93. Then this past November I had
a second neck surgery where the 2 discs were taken out
completely, bone graft taken from hip and a metal
plate put in. It also caused scoliosis (curvature of
the spine). As I believe someone mentioned to you
before.
I do not want to scare you but yes it does cause
secondary problems. At least for me it has. The
ruptured dics, scoliosis, twisted hips and arthritis
in the neck area. Now understand I have had this
since the early '70s so it has taken years to do this
damage. I also have degenerative disc disease from
this.
I do understand from some that if caught early; as
yours has been; it can be prevented. But, alas, back
then they did not have the botox or really know much
about it. I did not receive the botox until 20 years
after the CD started.
The dystonia has also affected other parts of my body.
But, again, I do not want to scare you and this does
not happen to everyone.
I know a man that has had CD for over 30 years and the
dystonia has not spread to other body parts as mine
has.
I guess this is enough for now. LOL Please stay with
the group as we are for support and remember you are
not alone.
I learned a long time ago a positive attitude and a
sense of humor are a MUST with this disease that
distorts our bodies.
Bonnie in TX
"I may not walk too good but I sure can ride a horse"
Thank you sooooo much for your responses. This group is great! Since
I last wrote, the two back muscles that were causing me pain right
after the injection has lessoned. I've been taking 4 Advil and that
seemed to help.
I guess I should give some more background on myself. For years I've
always had the "shakes" when I got nervous. I went to my family
doctor and he said it was from the coffee and cigarettes. So I cut
down on both but still had them. After about 2 years, he finally
sent me to this Neuro and on my first visit she diagnosed me with a
mild case of cervical dystonia. She could tell just by looking at me.
I was surprised that no tests were taken but I was so relieved that
someone was taking me serious that I just walked out of the office
happy. It wasn't until I got home and looked up the disease on the
internet that I realized how dibilitating this disease can get. On
my last visit to the doctor she did prescribe me Xanax 0.25 to take
when I knew I was going to be a stressful situation. (yea, that's
like everyday around here now) My husband is in the National Guard
and I'm waiting to be called out. Anyway, other than that I'm not on
any other meds and she doesn't seem to be considering doing anything
other than the botox. I was just taking her word that she knew what
she was doing. I'm so greatful that all of you are giving me you
opinions cause I am totally lost when it comes to the various
treatments.
As I said before, my head tilt is almost gone, the tremors have
lessoned but I still have tremendous pain in between my shoulder
blades (which I had before the injections started) Is this pain from
the dystonia? I know the back neck muscle pain was from the
injections but this shoulder blade pain is still there. I guess I'm
still confused on what is caused by the dystonia and what might be
something else. Since I have a mild case, willl it eventially
progress?
Thanks bunches for reading my mini-book. LOL I'm just so confused
and I realize that there are other people that have more severe cases
than me and my heart and prayers goes out to them. I just hate
the "not knowing" part of it.
Thanks for listening guys!
Kim
Radiosensitive sounds straight forward. Something about them makes their cells sensitive and not able to survive. But you are right "radio....sensitive". Sounds like a story they do not want to always tell. But ask them, they will find time somehow.
The genetic testing is a very aggressive move. Not a lot of people have the time or support for it. But unless you take the steps in this direction or any other direction it will not be solved. Exhaust the possibilities while they are young, where it will make a difference. I wish you well in your efforts.
God Bless, Terry
Hi David,
Thank you so much for your reply and your kind words. Also all the information you sent is wonderful.
So is your CD "Parkinson" related? Mine just came on one day 17 years ago. my sis-in-law was the first to notice and asked me if I was feeling ok? That my head was shaking. I then went to my first neurologist in 1984 and he diagnosed benign essential tremor recommended I take Inderal" which I said no too. just have such a low, low tolerate to meds, and I felt at the time I could live with this, there was no pain involved back then. But, the pain has progressed through the years.
I located a neurologist through the Dystonia Foundation that specialists in movement disorders, right here in the same city I live in. It took me one year to get into see him, but it was worth it. HE is wonderful, and he diagnosed me with CD, I have had MRI's since 1984 and also had my first BOTOX injection this past year, it did work very well but for only 2 months and then the shaking was back and the pain gradually came back as well, I have be unable to rec