Dystonia

[Guest guest]

Dennis,

what's his spine look like

Carl Bonofiglio

-- Dystonia

I just got an email from a good friend and banjo GOD, Tom who

recently was forced to lay down his instument due to Dystonia. He

didnt elaborate but I assume it is the "writers cramp" version of

the disease. Anybody have any experience with this? Would be a

huge loss to the bluegrass community if he couldnt play anymore.

Dennis Nowack, DC

Beaverton

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[Guest guest]

Hi

I have noticed that soe people have been told that they also have dystonia.

Having read about this desease I now realise that the problems with my left

hand side which have spread npw from my shoulder and round my face fit this

picture completely. does anyone know if you can have dystonia as well as CFS

and fibro or tell me anything about it. i am dreading going to the Doc and

saying these spasms in my face and neck are dystonia send me to a neuro. He

hinks I am mad already. help

n

>

>

>

[Guest guest]

You must have searched the archives, the dystonia thread was

about six months ago. I was told that I had dystonia after

complaining of a sore throat and painful swallowing. After two

ENTs and one neuro, I finally went to a speech/language

pathologist (not an MD). Bottom line was that I was breathing

improperly (upper chest breather) and all the muscles in my neck

were really sore. Learn to breath by pushing your stomach out,

and stretch all the muscles in your neck and shoulders. Do a

Google search using 'speech pathologist'. I went to the SLP one

time, she dx my problem, and I was supposed to go back, but I was

able to figure out how to improve by reading all the literature

that she gave me.

Mike C. (My dx from the SLP was actually dysphonia)

>

> Hi

>

> I have noticed that soe people have been told that they also have

dystonia.

> Having read about this desease I now realise that the problems

with my left

> hand side which have spread npw from my shoulder and round my face

fit this

> picture completely. does anyone know if you can have dystonia as

well as CFS

> and fibro or tell me anything about it. i am dreading going to the

Doc and

> saying these spasms in my face and neck are dystonia send me to a

neuro. He

> hinks I am mad already. help

> n

> >

> >

> >

[Guest guest]

n

I have this diaphragm muscle issue plus stiff neck and etc. and find that

cranialsacral therapy helps to a significant extent.

_www.upledger.com_ (http://www.upledger.com) for a trained therapist near

you

In a message dated 1/4/2006 10:51:05 AM Eastern Standard Time,

mariontait@... writes:

Hi

Thanks for your response, I have been doing breathing exercises for years as

my diaphram is pushed up and really hurts, feels like a tight band, but this

often makes things worse and the whole thing has got loads worse over the

last 18 months, my stiff neck has now started to pull to one side and is a

loosing battle even with osteopath ect. Time for a neurologist if I can get

one.

n

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

[Guest guest]

Hi

 

Thanks for your response, I have been doing breathing exercises for years as my

diaphram is pushed up and really hurts, feels like a tight band, but this often

makes things worse and the whole thing has got loads worse over the last 18

months, my stiff neck has now started to pull to one side and is a loosing

battle even with osteopath ect. Time for a neurologist if I can get one.

 

n

@...: yakcamp22@...: Mon, 2

Jan 2006 15:51:20 +0000Subject: Re: DystoniaYou must have

searched the archives, the dystonia thread wasabout six months ago.  I was told

that I had dystonia aftercomplaining of a sore throat and painful swallowing. 

After twoENTs and one neuro, I finally went to a speech/languagepathologist (not

an MD).  Bottom line was that I was breathingimproperly (upper chest breather)

and all the muscles in my neckwere really sore.  Learn to breath by pushing your

stomach out,and stretch all the muscles in your neck and shoulders.  Do a Google

search using 'speech pathologist'.  I went to the SLP onetime, she dx my

problem, and I was supposed to go back, but I wasable to figure out how to

improve by reading all the literaturethat she gave me.Mike C.  (My dx from the

SLP was actually dysphonia)>> Hi> > I have noticed that soe people have been

told that they also have dystonia. > Having read about this desease I now

realise that the problems with my left > hand side which have spread npw from my

shoulder and round my face fit this > picture completely. does anyone know if

you can have dystonia as well as CFS > and fibro or tell me anything about it. i

am dreading going to the Doc and > saying these spasms in my face and neck are

dystonia send me to a neuro. He > hinks I am mad already. help> n> >> >>

>

[Guest guest]

>

> Hi

>  

> Thanks for your response, I have been doing breathing exercises for

years as my diaphram is pushed up and really hurts, feels like a tight

band, but this often makes things worse and the whole thing has got

loads worse over the last 18 months, my stiff neck has now started to

pull to one side and is a loosing battle even with osteopath ect. Time

for a neurologist if I can get one.

>  

> n

n, I have been having the problem with my neck. See if you can

find a chiropractor who is trained in upper cervical treatment. It is

much different than normal chiro. It deals with the centering of the

head on the spine and the first four disc.

Bob

[Guest guest]

Hi n,

Yes, it is possible to have Dystonia, CFS, and FM, because I do. I have met a

very small handful of others who do.

Dystonia is contracting of opposing muscles, and can occur in one or many places

in body.

Most literature connects Dystonia with the Basal Ganglia. (Interesting since

some CFS/GWS research has shown damage to the Basal Ganglia)

It sometimes, but not always accompanies Essential Tremor (yes, in my case).

Suspects for Etiology? I have read for Dystonia are:

Genetic

Viral

Toxin

Post accident/injury

Drug

Infection

Mitochondria and other diseases. For instance, 's disease causes

" Dystonic " muscle spasm

It is not improper breathing or stiff neck, tho it can cause either. It is

different from simply " spasm " . The brain is telling muscles to move, opposite of

what you want them to, causing various postural changes and pain. (yes, it can

hit the face, too).

It has different names, based on the area affected.

Many with it go through similar hell of misdiagnosis that ME/CFIDS/CFS persons

do, including psych BS.

You are supposed to get evaluated by not just a Neurologist, but one

specializing in " Movement Disorders " .

I was lucky initially to get DX from Local Neuro, confirmed by a MDisorder

Specialist. But since then, some hellacious experiences with even " Specialists " .

I strongly suspected that my " CFS " DX added to this.

Tho cranial sacral and Osteopath can relieve me somewhat, they do not fix it.

Chiropractic is not recommended, especially with " cracking " , at least until you

learn more, or see one with major experience with Dystonia.

THere is a group for Dystonia, and a very experienced " Bulletin Board " of

patients. Like us, they range from mild to extensively, severely afflicted, and

they are very helpful.

It's not easy to hear about it, but I think that is the best place to go for a

recommendation for next step...which Specialist, etc.

My opinion:

Then, there might be something as close as possible w/your SX to print out, and

ask your DR. (does he have to authorize?)

to send you to " evaluate for " or " rule out " Dystonia. Rather than " tell him " you

have it.

Dr. Cheney found the Lactate spikes in my brain on an MRS, including by the

Basal Ganglia, and thought this may contribute to my Dystonia.

I also seem to have every other risk factor listed above too. My grandfather had

tremor and what I think was Dystonia in eyelids.

I also took Prozac in the 90s, another suspect.

I hope to God you do not have Dystonia. It would be great to have it ruled out.

But if you have it, getting a Diagnosis and learning about is

A #1 important.

(For coping/treatment info, and also because certain medications that are for

CFS can escalate it.)

I do think and hope the Science is advancing in this area.

I hope this helps,

Katrina

, " n Tait " <mariontait@h...> wrote:

>

> Hi

>

> I have noticed that soe people have been told that they also have dystonia.

> Having read about this desease I now realise that the problems with my left

> hand side which have spread npw from my shoulder and round my face fit this

> picture completely. does anyone know if you can have dystonia as well as CFS

> and fibro or tell me anything about it. i am dreading going to the Doc and

> saying these spasms in my face and neck are dystonia send me to a neuro. He

> hinks I am mad already. help

> n

> >

> >

> >

[Guest guest]

kattemayo wrote:

> I spent several years on forums of people with Dystonia. It seems that most

Neurologists advise against Chiroprators, at least the cracking part, for

Dystonia. Saying that it can and has caused significant worsening.

>

> On the other hand, like many other things, some patients have better reports.

Especially if it's by a Specialist in Dystonia.

>

> One other thing is that we do not " hold " the adjustments very well. This is

very frustrating for doctor and patient, but it's the norm for Dystonia. I

assure them they are helping tho, especially for the secondary contractions and

keeping the rest of the body aligned.

>

I don't have Dystonia, but my Fibromyalgia has often interfered with

" normal " chiropractic adjustments - difficulty in doing them, excessive

pain afterwards, and difficulty in " holding " the adjustment.

My current chiropractor is very well versed in Trigger Points. He

always works my TPs in many spots before even attempting to adjust me,

and it really helps - getting TP work helps the tense and tight muscles

let go, so the adjustment takes WAY less force and can be done more

exactly and gently. Some adjustments " crack " , some don't. After the

big ones (like when my neck is so out of whack it looks like I've been

in a car wreck), he holds the neck and head until my eyes stop rattling

around my skull, always asking if I'm OK and not proceeding until I

confirm that I am.

Have people with Dystonia experimented with TP work (or moist heat, or

muscle relaxants) - anything to loosen up a bit before a chiropractic

adjustment?

--

el (andreafrankel at sbcglobal dot net)

" wake now! Discover that YOU are the song that the morning brings... "

[Guest guest]

Dystonia refers to weakened muscle tone and is related to Parkinson's. Treat like Parkinson's disease.

There are 2 different types of dystonia:

- focal, and

- generalised.

The cause of Dystonia is a chemical/electrical imbalance in the neurotransmitters of the basal ganglia.

DIET

Follow a raw food diet, include a lot of fresh, organic fruit and veggies, green leave vegetables, carrot juice, seaweed, raw seeds, like sunflower and pumpkin seeds. Follow this diet for 6 weeks, THEN DRINK FOR 1 WEEK ONLY FRESH, ORGANIC, HOME MADE JUICES, carrot and beet root juice and eat green coloured vegetables. Add Spirulina and wheatgrass.

After the fasting period, eat for one day just organic apples. Follow a diet like the initial 6 week diet, but add seafood, except shellfish.

Avoid all tinned foods, tea, coffea, alcohol, sugar in all forms, white flour products, soya products, margarine, peanuts, wheat products and dairy products. Try to fast 3- 7 days every month by just drinking fresh, organic, homemade vegetable juices.

TREATMENT

-Alternating warm and cold showers-5 minutes warm and 3 minutes cold.

-Alternating warm and cold showers with water directly on your head spuit-5 minutes warm and 3 minutes cold.

-Saunabaddens daagliks vir 20 minute,gevolg deur spinale manipulering.

-Walk for 20 minutes 3x pw.

-Sunlight and –seawater bathing- ten minutes per day.

SUPPLEMENTS

China-Homaccord-10 drops at 0800 and again at 1600

Ypsiloheel-1 tablet at 1000 and at 1800

Galium –Heel-10 drops 1200 and at 2000

Spascupreel-1 tablet every 10 minutes.

Acethyl-L-Carnitine-2000 mg pd

N-Acethyl-Cystein-1500 mg pd

Phosphatadyl-serine-500 mg pd

Phosphatadyl-choline-3 g pd

Vit B12-7500 mg pd

Vit E-2000 ie pd

NADH-10 mg pd

Co-enzym Q10-300 mg pd.

HERBAL MEDICINE

Ginkgo biloba\thyme\Swedish Bitters\Yarrow.

PROTOCOL

1. Do scalar program (all).

2. Extra treatment in the upper chakras.

3. Put Parkinson's disease/dystonia in yellow subfile box. C on emotions.

4. Run test items for yellow box.

5. C on emotions; write down.

6. C on chromosomes; write down.

7. C on Treatments; C on Stim/Duplicate, type in "invert" and then list all negative emotions.

8. CPrograms/Therapy; Fill in Shumann wave information (Parkinsons/brain/control-resistance to change.

9. Do Trivector program.

10. Do DNA program.

11. Do Disease Dictionary (this can be done at the beginning of the program and let it run while doing therapy).

12. Do color therapy.

13. Balance emotions/neurotransmitters on NLP program.

14. Give extra zap on dopamine and whatever is out of balance.

15. Do unconscious choice on NLP program.

16. C Biofeedback program/C hypnosis. Click off and go to bottom of screen (sentences).

17. Load up "Custom Design Screen" and said "I release and let go of all negativity in my life." "I block all negativity from affecting my health or my life." "I am healthy and getting better and better every day and in every way."

18. C Biofeedback (make sure affirmations are flashing (or C custom design again to make them come up on screen).

19. Also can do "Reverse Psychic Attack" "Release Psychic Pain" "Connect To The Universe".

Parkinsons Supplementation.

Dietary Sources of Coenzyme Q10

(mg of Coenzyme Q10 per 100 mg)

Dietary Oils: Rape Seed Oil

Grains: Rice Bran 0.54 Wheat Germ 0.35

Meats: Organ Meats

Nuts: Hazelnuts: 1.7 Walnuts 1.9

Chestnuts 1.4 Almonds 1.4

Pistachio Nuts 2.0

Seafoods: Mackerel 4.3 Salmon

Sardines 6.4 Eel 1.1

Yellowtail 2.0

Seeds: Sesame Seeds 2.3

Vegetables: Cabbage 0.16 Broccoli 0.86

Spinach 1.0 Cauliflower 0.14

Potato 0.1 Garlic 0.27

Onion 0.1 Eggplant 0.21

Carrot 0.22 Sweet Potato 0.36

Dietary Sources of Vitamin B12

True Vegan Diets contain zero Vitamin B12 and Vegetarians are more prone to Vitamin B12 deficiency than

non-vegetarians.

(mcg of Vitamin B12 per 100 grams)

Algae: Spirulina 160

Eggs: Egg Yolk 2

Herbs: Fenugreek

Meats: Kidneys 30 Liver - Beef 80

Meat - Red 2

Processed Foods: Miso Tempeh 5

Seafood: Clams 98 Cod 2

Mackerel 10 Herring

Oysters Haddock 1.3

Sea Vegetables: Kelp Kombu 2

Yeasts: Brewers Yeast

Dietary Sources of Vitamin E

(mg of Vitamin E per 100 grams)

Cereal Grains: Brown Rice Oatmeal

Dietary Oils: Wheat Germ Oil 190

Maize Oil 66 Sunflower Oil 27

Fruit: Banana 0.32 Blackberry 3.5

Herbs: Parsley Mustard

Nuts: Peanuts 12

Seafood: Shrimp 6.6

Sea Vegetables: Kelp

Seeds: Sunflower Seeds

Vegetables: Carrots Tomatoes 1.4

Cod Liver Oil 20 Eggs

Watercress Spinach

Broccoli

Dietary Sources of Phosphatidylcholine

(mg of Phosphatidylcholine per 100 grams)

Bee Foods: Bee Pollen

Eggs: Egg Yolk

Processed Foods: Chocolate Lecithin 25,000

Vegetables: Cauliflower Corn

Cabbage

Dietary Sources of Phosphatidylserine

(mg of substance per 100 mg)

Processed Plant Foods: Lecithin 2,000

Nuts , seeds , meat and unpasteurised milk contain Carnitine and Cystein.

Dystonia

Hi, anyone had any experience with Dystonia?Thanks