Written  By  Katie Mast

Albert has dystonia.  Until about 1984, he thought he was stricken with polio in 1950 at age 7.  However, the doctors were always puzzled because his symptoms were unlike normal polio symptoms.  In 1984 we saw a doctor who diagnosed him with dystonia.  Since then we have been on a long journey of trying to keep him comfortable.  A big part of that journey has been pain that has come from various sources.  Because of painful muscle spasms in his neck, a number of years ago he started taking botox shots (see description below).  They need to be repeated every three months and have not been helpful in stopping neck motion for him, only easing the force of the spasm.  Last summer his hands started to pain him.  Testing showed it to be carpal tunnel syndrome.  He had surgeries done in November and December.  Instead of curing the problem, his pain escalated.  He now has terrific pain in his arms and hands as well as numbness but also a feeling of pin pricks in his hands and arms.  The pain is caused by stuff related to his dystonia.  The journey to find relief from his pain has led us a procedure called deep brain stimulation (DBS).  (See description below)

We are feeling the need for you to be better informed what is happening so you can better pray for us.  Albert has been scheduled for November 20 for the first of two surgeries to put in the equipment for the DBS.  The second surgery is planned for a week later on the 30^th.  Two weeks to a month later they would hope to turn on the stimulator.  While we are so ready to find help for Albert’s pain, we also know that probing in the brain is a very dangerous surgery.  But because Albert needs help, we are willing to try this.

Will you pray for us?

To those of you who are interested, below is a copy of an article from this website:

http://www.dystonia-foundation.org/pages/what_is_dystonia_/26.php

What is Dystonia?

Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are “competing” for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are approximately 13 forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom.

Dystonia affects people of all ages and backgrounds. 

Dystonia may affect a single body area or be generalized throughout multiple muscle groups. Dystonia affects men, women, and children of all ages and backgrounds. Estimates suggest that no less than 300,000 people in North America are affected. Dystonia causes varying degrees of disability and pain, from mild to severe. There is presently no cure, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies.

Although there are multiple forms of dystonia and the symptoms of these forms may outwardly appear quite different, the element that all forms share is the repetitive, patterned, and often twisting involuntary muscle contractions.

Dystonia is a chronic disorder, but the vast majority of dystonias do not impact cognition, intelligence, or shorten a person’s life span. The main exception to this is dystonia that occurs as symptom of another disease or condition that can cause such complications.

Botulinum Toxin Injections  (aka Botox)

The introduction of botulinum toxin as a therapeutic tool in the late 1980s revolutionized the treatment of dystonia by offering a new, localized method to significantly relieve symptoms for many people. Botulinum toxin, a biological product, is injected into specific muscles where it acts to relax the muscles and reduce excessive muscle contractions.
Botulinum toxin is derived from the bacterium Clostridium botulinum. It is a nerve "blocker" that binds to the nerves that lead to the muscle and prevents the release of acetylcholine, a neurotransmitter that activates muscle contractions. If the message is blocked, muscle spasms are significantly reduced or eliminated.

Deep Brain Stimulation - DBS

Deep brain stimulation (DBS) involves implanting stimulating electrodes into selected targets in the brain in order to mimic the effects of lesioning. (note from Katie-you can read about lesioning on the above website) Surgeons began using DBS in place of lesioning for Parkinson's disease patients in the mid-1990s. DBS also has applications to tremor and pain. Whereas DBS has been used to treat thousands of persons with Parkinson's disease, the procedure began being applied to dystonia less than 10 years ago. It is estimated that just under 1,000 dystonia patients have been treated with DBS.

Bilateral pallidal DBS produces significant benefit in dystonia with average improvements of about 50-60% in the Burke-Fahn-Marsden dystonia rating scale. Some primary generalized patients have been reported to have up to 90% improvement. DBS has also been performed on persons with secondary dystonias, cervical dystonia, segmental dystonia, and myoclonic dystonia with encouraging results.

The complete DBS apparatus includes the DBS electrode, a connecting wire, and a pulse generator (a.k.a. "brain pacemaker" or stimulator) that contains a battery. The initial procedure to implant DBS is identical to that of the pallidotomy and thalamotomy. Once the brain target is mapped and identified, instead of creating a lesion, the surgeon places the DBS electrode into the target. The wire and pulse generator may be implanted at the same time as the electrode or at a later date. The generator is implanted under the collarbone, and the wire is tunneled up the neck, behind the ear, and to the site of the electrode (the patient is under general anesthesia for this part of the procedure). The wire is connected to the electrode, and the incisions are closed. Most DBS procedures involve the implantation of two generators and are done in two surgeries. It is possible to implant both generators in a single surgery, and surgical centers vary in their preferred approach. Immediately after the operation, the patient may temporarily resume medications. The patient may be discharged the next day.

Once the generator is implanted, the patient must wait a week or two before the batteries are activated. This waiting period is necessary to allow the swelling that normally occurs with the surgery to diminish. The DBS electrode conveys electrical pulses into the brain using power produced by the battery in the generator. A series of visits to the hospital are required to adjust the voltage settings to the needs of the individual. It may take several weeks or months to achieve the correct settings. The patient can check the status of the generator using a handheld device that resembles a TV remote control. Using this device, the patient can determine if the generator is on or off, and can turn it back on in the event that it shuts down unexpectedly. (Certain phenomenon such as magnetic fields caused by security devices may cause the battery to temporarily stop working.)

The expected life span of a battery at a typical voltage is about four years. At a very high voltage, the battery may need to be replaced after a year; at a very low voltage, perhaps up to seven years. Replacing a battery can be done under general or local anesthesia as an outpatient procedure.

Dystonia does not respond to DBS in the same as other movement disorders do. For example, persons treated for tremor will generally improve within seconds of turning the generator on. In patients with dystonia, improvement may be delayed for days, and weeks or months may pass before the full extent of the benefit is reached. DBS does

not necessarily eliminate the possibility of subsequent drug or botulinum toxin treatments.

Side effects are minimal, but no procedure is without risks. The main risk in DBS is a fatal hemorrhage. However 99-99.5% of patients do not have significant bleeding. Despite vigorous efforts to avoid it, infection is a risk in approximately 2% of patients. Infection can be serious and warrant the removal of the hardware. If this happens, it may be possible to re-implant the hardware once the infection is treated. Hardware failure is also a concern, though this is rare and precautions are in place in the event of situations such as a battery failing. It is estimated that in 5% of DBS procedures for dystonia some complication may arise, most of which can be addressed without removing the hardware.

Although no longer considered 'investigational' for dystonia by the United States Food & Drug Administration, DBS is in its relatively early stages as a treatment for this disorder. The preliminary results are quite positive, and the procedure is expected to evolve over time as more patients are treated and more data is collected.

About Dystonia From the website   http://www.medtronic.com/your-health/dystonia/index.htm

Dystonia is a neurological movement disorder affecting as many as 250,000 people in the United States.¹ Primarily a hereditary condition, dystonia can cause severe involuntary muscle contractions that may interfere with your everyday life. A Medtronic therapy may be able to help.

Definition and Symptoms

Dystonia is a neurological movement disorder characterized by involuntary muscle contractions. These contractions force certain parts of the body into repetitive, twisting movements or painful postures. Dystonia is the third most common movement disorder in the United States, following essential tremor and Parkinson’s disease.¹ Approximately 250,000 adults and children in the United States suffer from the movement disorder known as dystonia.¹ These individuals often suffer from abnormal involuntary muscle contractions that may interfere often with everyday functions like walking, sleeping, eating, and talking.

Types of Dystonia

There are two types of dystonia:

·        Primary dystonia – a condition in which dystonia is the only symptom (no other pathology)

·        Secondary dystonia – the result of another health condition such as stroke or infections. It may also result from an injury, such as trauma to the brain.

Additionally, there are various classifications of dystonia characterized by the affected part of the body:

·        Focal dystonia (including cervical) affects one area of the body

·        Segmental dystonia affects two or more nearby areas of the body

·        Generalized dystonia affects the entire body

Causes:

Although the causes of dystonia are unclear, primary dystonia is mainly hereditary. Generalized dystonia is considered the most difficult form of dystonia to live with and to treat.

Although dystonia has no cure, there are a number of treatments available for finding relief. One option is Medtronic Deep Brain Stimulation (DBS) Therapy. It may be right for you if you have chronic, primary dystonia, (Including generalized and segmental dystonia, hemidystonia, and cervical dystonia) have not had success managing your symptoms with medication, and are 7 years of age or older.

DBS Therapy for Dystonia

DBS is a brain stimulation therapy that offers an adjustable, reversible method of treatment for dystonia. The treatment uses an implanted medical device, similar to a pacemaker, to deliver electrical stimulation to precisely targeted areas of the brain. Stimulation of these areas enables the brain circuits that control movement to function better.  DBS Therapy is designed to control some of the primary symptoms of dystonia, such as muscle spasms, twisting, involuntary contractions, posturing, and uncontrolled movements.

In the sixties and early seventies, I raised hogs in Oklahoma.  I had a 1961 2 ton Chevy truck with an 18 foot stock rack that I used to haul my fat hogs to market.  This truck had an early version of cruise control.  It was a cable attached to the carburetor that I pulled out to keep the gas pedal stay where I wanted it to stay.  That way I could get the old Chevy up to the 65 mph speed limit, which was also about as fast the truck could go, pull the throttle knob, sit back and relax and let the miles roll by.  Interstate 40 was partially finished at that time and made driving a pleasure.  It had power steering, provided I kept my arm muscles in shape.  Air conditioning was the hand crank type.  I could determine how much of that 105 degree Oklahoma air I wanted blowing across my face by how far I cranked down the windows.

 Sometimes my brother who lived in Canada would go with me.  We loaded the hogs about 4 in the morning and drove 90 miles to the stock yards before sunup.  We ate breakfast at the Cattleman’s Café.  Three big pancakes, sausage and eggs cost about a dollar.  Coffee was about 5 cents extra.  I did not drink coffee back then so I saved big bucks there, maybe 2 every 3 years.  If I had a hotshot that did not work, I took it to an elderly gentleman who had an office upstairs from the café.  He always took time and fixed up my hotshots like new and only charged me for batteries if they were needed.  My brother was so amazed how I could go anywhere in Oklahoma City and buy supplies, even places I had never been before, give checks in payment and never being asked to show any kind of ID.  It was not until we moved to Iowa that I ever was asked to show an ID, unless it may have been when I was stopped by a highway patrol and I don’t know about that.  I was never given a ticket.  At first, I almost felt insulted that my honesty was even questioned.   It took some getting used to.  It is a whole different culture up here.

Now let me get back to what this post is all about, how God sometimes protects us even when we do really stupid stuff.  My brother and I did not think of this as being stupid or irresponsible or dumb.  We only thought of it as being time efficient.  By the time we hit the interstate on our way home, the one driving was dead tired.  Not wanting to waste any time stopping to switch drivers, we set the “cruise control” at 65 and we switched on the go.  I think we had good control all the time.  We did this numerous times and nothing ever happened to make us think otherwise.  But looking back, I see it as being a foolish thing to do.   God must have been smiling to Himself saying, If these guys don’t have enough sense to stop when switching drivers, I better send extra angels to protect them.  To be continued……

Workers' Appreciation Day

The Story of the Flour Mills

            I guess you could call this  the “story of the flour mills".  Early in our married life Katie and I decided to make bread for our family with fresh ground whole wheat flour rather than white flour.  We were convinced it was healthier, so though we were poor, we spent the money to buy a Magic Mill.  Though we were eating healthier, we got poorer and poorer.

After a lot of praying and brainstorming, we felt like God was leading us to put out a u-pick strawberry patch.  I went to see our banker to see if they would finance us.  He got excited about the idea.  Decatur County is the poorest county in the state of Iowa.  This kind of thing had never been tried in this poverty stricken part of our dear state.  With our banker backing the venture, Katie and I began doing our research.  We attended every strawberry workshop or meeting we could find.  We learned a lot in a short time.  Among the things we “learned” were these two things:  1. a u-pick strawberry patch would never work where we live.  There were not enough people within a 25 mile radius of our farm and the people in southern Iowa were too poor.  2.  for a u-pick patch to succeed it has to be open Sundays.  We decided to proceed anyway.  Both proved to be wrong.  We eventually had 3 acres to meet the demand.  And we never sold one strawberry on a Sunday.

This does not sound very “millish”, but please be patient with me.  We learned the importance of having a sprinkler irrigation system not only to water the strawberry plants but also to protect them from frosts in the spring.  So more money was spent for that.  There would be no return from all that expense for another year.  To get some income that first summer we planted all kinds of produce to sell at a new farmer’s market.  By late summer things were getting very slow, with most of the produce being past.  That is when Katie got the idea of making pies to take to market.  That was a hit.  Then she added bread, then rolls.  When I first asked her if I could help her, she didn’t know what I could do.  I could maybe grind flour for her?  She did not think that would help.  She could grind faster than she could make bread anyway.  I could crimp pies if she would show me how.  Oh no!  It is very important to make the pie look nice so people will buy it.  There was really nothing I could do to help except to get out of the kitchen.  As the baking picked up she just could not do it by herself.  I moved the flour mill out to the porch and ground the flour.  Then I learned how to crimp pies.  Then I learned the art of rolling out dough for rolls.   That was in 1986.

In August of 1988 we started going to the Des Moines market.  For the last market we made 200 loaves of whole wheat bread.  It took us 8 hours.  That is when we knew we either had to quit or get larger equipment.  We bought an ancient 60 quart mixer and an old pizza oven.  Our bread sales kept increasing.  We  purchased a 10 X 12 little barn to grind flour in to keep the dust out of the house.  By then we were using 2 Magic Mills.  We had worn out several of them.  It took 4 hours using two mills to grind enough flour for the 6-700 loaves we were doing then.  Then we got a batch of wheat that had tiny rock pebbles in it and knocked out our mills.  We found what was called a commercial 8 inch stone mill.  It was a big disappointment.  It was a mickey mouse of a mill if there ever was one.  We looked and looked for something to meet our needs.  We finally found what we needed in SC in January of 1994.  We are still using that mill today.  It is a 20 inch stone mill of commercial quality.  Don’t let the 20 inch make you think it is a small mill.  The stones are 20 inches in diameter.  The stationary stone weighs 196 pounds and the one that turns weighs 200 pounds.  The housing is all made of heavy cast iron.  It has a stainless steel hopper that holds 200 pounds of wheat.  All the wheat goes over a cleaner before it gets to the grinding stones.  A blower blows the flour up to a dust collector after which if goes into the flour containers.  The mill is powered by a 10 hp electric motor.  This whole thing weighs about 1000 pounds.

The little barn was getting difficult to keep out those fury little creatures with the pretty beady eyes.  Patch one hole and another hole soon took its place.  So a new little barn was built to house the flour mill.  The mill was moved last Monday.  How does one move a 1000 pound unit without a skid steer or fork lift and do it with minimal effort?  My dad taught me an old fashioned trick that I passed on to my son.  He moved the mill almost single handed.  Katie helped him going up the incline to the new little barn.  How is it done?  I should have taken pictures but I did not.  I am not too good at word  pictures but I will try.  All you need is three 2 inch pipes.  The bottom surface of what you want to move and the surface of what you are moving across need to be flat so a pipe can roll on them.  In this case, the mill has 2 X 6 boards fastened to its base.  Two rows of 2 X 4s were laid on the ground from the old little barn to the new little barn.  You place one pipe at the middle and one at the front of direction  you want to go and push whatever you are moving.   Just before the pipe that was in the middle rolls free, place the 3^rd pipe in front and roll onto it.  The pipe that rolled free will then be placed in front just before the next pipe rolls free.  The hardest part is to put the pipes under whatever is to be moved and then to get them back out again.  I hope this explains Miriam and Mary Ann’s questions.  I will try to get some pictures of  the barns and the mill to show later.