A note from Katie

God's Protecting Hand, Part 2

                       “Boys, keep those tractors rolling!  We’ve got a thousand acres to cover.  Carry your water jugs with you.  Stopping every few rounds to get a drink is a big waste of time.  You are to stop only for fueling the tractors and greasing the plows or for breakdowns.  You are allowed 15 minutes to eat, but don’t count that time in your hours.”  Old Otto had a tight fist.  He was a John Deere dealer with lots of money and land.  He was not our boss, but he made sure our boss did his job keeping us on our toes.  We got to drive new tractors every year, three of them.  Two were the wheatland type with pull type 4 16 inch moldboard plows.  The other one was always a row crop type pulling a 4 16 three point mounted plow.  You got on the wheatland tractors from the back end.  We plowed close to twelve inches deep.  The right wheels would be in the furrow left from the previous round.  The driver’s platform of these big boys would be close to the ground when the wheels were in the furrow.  These tractors followed the furrow without any hands on the steering wheel.  Only when going around corners did we have to worry about steering those big beasts.  Well, all but once!  But that is another story!  These were large fields of mostly flat land.  We made the corners big and round so there would be no dead furrow except when finishing up a field.  My oldest brother, who plowed at night, would tie the steering wheel with a piece of baling wire, that all purpose fix-it material that any Oklahoma cowboy with any common sense, always carried with him!  With baling wire and a pliers, he could fix almost anything, including running out of gas.  A cowpoke with any smarts at all could fix running his old army jeep out of gas with a piece of baling wire!  Yes sir, even with an old rusty piece, just so it was long enough and wouldn’t break!  He would take that piece of baling word and his pliers and tie a spare can of gas so it couldn’t jump off the back of his jeep if he hit a pothole or gopher mound or something of that sort!

                        As I was saying, we were not to stop those tractors to get a drink of water.  The problem was that if we carried our water with us, the water would get about as hot as the air temperature, which at times reached 110 degrees.  We came up with a cool idea to keep our water cool and still keep those tractors moving.  I don’t know where our boss man was all this time.  He carried a pair of binoculars with him and he seemed to always know everything that was going on, especially if a tractor was stopped.  That is probably why he never caught on to what these crazy kids were doing.  I am almost sure if he had known, he would have put a stop to it then and there.  One time when he wanted to talk to me, he complimented me on how easily I vaulted over the fender and wheel onto the plowed ground and landed solidly on my feet.  I didn’t say a word, but I could have told him I had a lot of practice doing that and landing on my feet running!  I was crippled but I was quite sure footed and seldom stumbled and fell like I do now.  Since all three tractors kept moving, he must have assumed everything was okay.  And it was!  God must have sent a double guard of angels to watch over these crazy kids.  Otherwise the story could have had a very sad ending. 

            We knew if we nearly covered our water jugs with freshly plowed dirt, the water stayed relatively cool.  By no means was it ice cold like we kept our iced tea we had for lunch.  We used the best and cheapest method to keep our iced tea cold without even the ice being melted.  I should get a patent on this but I will let you in on this secret without charge.  It would be almost impossible to track down the violators anyway.  So here it is for free.  If you try it and it works for you, maybe if you just let me know, I would be amply rewarded.  We used a two quart glass jar and filled it with tea and ice, about a third full of ice.  This we wrapped in about a half dozen layers of newspapers and tied it with a rubber band.  We set this in the shade where we planned to eat, under a shade tree, if there was one around.  Otherwise, we put it under our pickup truck.  Even on a hot day, there was still ice in the tea jar when we stopped for lunch break at noon.

                        Back to what this story is all supposed to be about.  Those tractors did not move as fast as they do today.  We plowed between 2 and 3 miles per hour.  We could get off the tractors two ways.  One way was to simply step off the back and make one step onto the plowed ground and make a dash for the water jug.  The other way was more dramatic and I usually took that route, not to show off, it simply was more fun!  That was to vault over the fender and the wheel onto the soft freshly plowed ground, usually running.  That gained several seconds and those seconds were important!  That tractor kept right on plowing, without a driver.  There was no time to waste.  The 3 plows made a 16 feet swath every round.  We did not want to make too many rounds between drinks or we had to run too far to retrieve our jugs.  Sometimes my brother would grab my jug and bring it up so I wouldn’t need to run so far.  After a hurried drink, we reburied the jug and made a mad dash for the tractor, and jumped on the back.  We must have lived by positive thinking.  I don’t think it ever occurred to us that we might not catch up with the tractor or that it would be possible to stumble behind the tractor and get plowed over and where that driverless tractor might end up at in either situation.  Nor did we ever think to look up and count those guardian angels God commissioned every day to watch over us.  I suspect they were just as glad as we were to have a day of rest every seven days!

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.