DYSPHAGIA - WHAT IS IT?

This is the name for a medical condition that most people are aware of…..unless you have it.  It means that you have difficulty swallowing.  Yes, it is one of the conditions that accompany some forms of muscular dystrophy.  It is also very common in older people.  It is also a condition, if severe enough, that can be terminal.

The first time that I experienced dysphagia…..I thought I was going to die.  Yes, I thought I was going to choke to death.  I was eating some Chinese pad thai, which is a dish that has thick rice noodles.

I swallowed and the food stuck in my throat.  I had never experienced that problem before, and did not know what to do.  I broke into a sweat, with my heart racing.  I was trying to get someone to help but I could not speak.  I was finally able to swallow after about twenty minutes.   Needless to say, I don’t eat pad thai anymore.

If you have Dysphagia here are some solutions that I have found to help. 

(1)  Increase your muscle mass, as the muscles in the throat are impacted by the muscular dystrophy.  There are a number of posts that I will do on this subject.

(2)  Cut your food into small pieces.

(3)  Chew all your food well before swallowing.

(4)  Do not try to swallow large amounts of food at one time.

(5)  Do not eat when you are in a hurry….. take time to enjoy your food.

(6)  Do not eat pasta dishes, breads or any other food that has caused you to have a problem.

(7)  Always have a glass of water with every meal.

(8)  Do not drink really cold drinks as that cause the muscles to cramp, which can be painful.

(9)  If the dysphagia is severe enough you should have your food processed in a blender.

RESOLARIS - THE CURE FOR FSHD?

As I have mentioned in my previous posts, there are no current approved medical treatments that cure any type of muscular dystrophy.  There is truly exciting news  about a clinical trial for Resolaris, a potential solution for people with facioscapulohumeral muscular dystrophy (FSHD).   FSHD typically starts in the face and upper body and progresses to the lower body.  People with FSHD typically experience debilitating fatigue and chronic pain.   FSHD can be fatal, especially with those who have an early onset.  FSHD is typically diagnosed by the pattern of muscle weakness, DNA testing and other symptoms.

Resolaris is a new drug developed by aTyr Pharama,  a San Diego based company.  Resolaris is derived from protein released into the blood by human skeletal muscle cells.  Resolaris is administered intravenously.  aTyr believes that Resolaris will provide help to people with rare myopathies with excessive immune cell involvement.

The clinical trial is the first administration of a naturally occurring protein derived from physiocrines.  Pysiocrines are a new class of physiological modulators that promote the process of restoring stressed or diseased tissue to a healthier state.  The clinical trial is scheduled for 44 FSHD patients in the European Union.  The trial is designed to evaluate the safety, tolerability, pharmacokinetics and biological activity of adult patients.

For more information about Resolaris please visit the aTyr websitehttp://www.atyrpharma.com.

PERCEPTIONS

People have perceptions that doctors know everything about muscular dystrophy.   A general practitioner will not be as knowledgeable about the disease due to the broad variety of issues that they deal with.  If you have any questions that you might possibly have a form of muscular dystrophy go directly to a neurologist who deals with muscular dystrophy and the related diseases.

Obviously, neurologists who specialty is neuromuscular diseases do know quite a lot about the various types of muscular dystrophy.  Actually, they are quite adept at diagnosing this disease.

Since there are no known cures available, I need to outline that this is your medical issue.  This is your fight, obviously you doctor can help, but you need to take the responsibility to beat this disease……no one else can do it.

This disease will beat you or you can beat this disease.   In other words…..blaze your own trail.  Do the things that are going to help you deal with this crippling rehabilitating disease.  Don’t believe that there is nothing that you can do to help you live with this!

DEPRESSION

Depression impacts nearly everyone that has muscular dystrophy (MD).  Yes, most of us have to deal with it since MD impacts our lives so significantly.  Once you understand that you have this disease it is difficult to deal with the reality.  Especially, once you understand all the ramifications and that your life will never be the same again.
   

When I was informed that I had muscular dystrophy, it was as if I had been run over by a truck.  The doctors indicated that FSH runs in families.  So, I thought that the doctors had to be wrong again (denial). I am the exception to that rule, as I did not have FSH or any other type of muscular dystrophy on either side of the family.

That is when depression set in for three days…it was like a black hole that I could not get out.  I was depressed about the difficulty of the situation.  Then, I decided that I was going to find a solution and BEAT this disease.  So, I started researching MD and any possible solution.

So, the first thing to do is to recognize it for what it is!  Here are some of the classic symptoms.

1.    Feeling of sadness

2.    Feelings of worthlessness

3.    Lack of interest

4.    Lack of focus

5.    Thoughts of suicide or death

 SUMMARY:

Depression is a normal emotional condition with any major disease.  If it becomes more pronounced you should seek competent medical care.  I chose to not discuss it with the doctor or take any type of medication.

SUGAR - THE SILENT KILLER

In my previous post on Ph Balance & Muscular Dystrophy, I mentioned that a low Ph level, which is acidic, can have a very negative impact on muscles.   Ok, I admit that I have a sweet tooth….I am sure that many people do.  One of the worst foods that you can consume is sugar.  Excessive sugar intake has the effect of making the body acidic.  The muscles do not perform well in an acidic environment.

In fact, excessive sugar intake is bad for everyone.  Since it causes the body to become acidic, an acidic environment encourages the breeding of fungus, mold, bacteria and viruses.  This is in addition to the other well know concerns such as obesity, type 2 diabetes, high blood pressure, heart disease, stroke and tooth decay.

Obviously, most people know that there is sugar in cakes, deserts, jelly, sodas since those foods are sweetened with either sugar or high fructose corn syrup.   Sugar is in more food products that most people would realize.  There is sugar in cereals, juices, ketchup, many sauces like pasta and barbeque sauces, mustard, bread and many other products.

You have to read the labels to determine how much sugar is in the processed foods that we use every day.  When reading labels, these are the names of various sugars high-fructose corn syrup, corn syrup, fruit juice concentrate, molasses, honey, dextrose, fructose, glucose, lactose, maltose and sucrose.  Usually they are grams, a teaspoon of sugar equals to 4 grams.

The American Heart Association recommends strict limits on added sugars….150 calories (about 9 teaspoons) a day for men, and 100 calories (about six teaspoons) a day for women.  This is a general guideline for added sugar.  For comparison purposes, a regular size 12 oz. soda contains eight teaspoons of sugar or about 130 calories.

So, it is important to limit the amount of sugar intake that you do daily.  I reduce my intake of sugar products by (1) reading labels when shopping and eliminating purchases with high sugar, (2) cutting portions of anything with sugar and (3) using Stevia as a sweetener for tea, coffee, and other liquids.  I do not recommend the other sweeteners due to the controversial safety claims.

PH BALANCE & MUSCULAR DYSTROPHY

As I have mentioned in previous posts, one of the best things that you can do is tune up your body.  If you keep your body in optimum shape, this will slow or reduce muscle deterioration.  Ph balance is very important to people with muscular dystrophy.  When the body is acidic it takes out alkaline minerals like calcium, magnesium, and potassium from your bones, teeth, and organs to neutralize the acids.

These minerals are essential to proper muscle function.  Therefore, if these minerals are depleted in your body, you will experience faster muscle breakdown.

Magnesium is another mineral that is required for proper muscle function.  It also helps with over 300 other reactions in the body. It works along with potassium to support proper muscle function.   The lack of magnesium will result in symptoms of muscle weakness, muscle twitching and muscle contractions.   Magnesium is also important to muscle relaxation, which is important for healing after exercise.

Magnesium absorption is important so, magnesium glycinate, citrate and aspartate are highly absorbable forms of magnesium.   Patient studies have shown that magnesium aspartate helps relieve muscle pain.

Potassium is important as a nutrient since it helps to build proteins which are the building blocks of muscle.  The lack of potassium in the diet will result in similar symptoms to lack of magnesium.  Bananas are a good source of potassium as well as other minerals and vitamins.  Potassium is also important in controlling the acid – alkaline balance.

It is important that you keep your body in a positive ph range of 7.2 – 7.4.  This can be done ideally thru eating nutritious alkaline foods and proper vitamin and mineral supplementation.   It is relatively easy to accomplish with a diet of vegetables, leafy greens, sprouts, avocados and green juices.  If we flood our bodies with vitamins, minerals, oxygen and chlorophyll we will create healthy cells.  Conversely, an acidic diet high in animal products, processed carbs, and refined sugar will accelerate muscle deterioration.

Another alternative method of maintaining ph level is to drink alkaline water.  Alkaline water is available at some grocery stores or you can purchase water filter dispensers.

The alkaline levels can be measured by purchasing ph testing strips.  You can test your urine at home with litmus paper strips, which can be purchased in drug stores or online for under $15.  It is best to test your second urine of the day to get an idea of your ph. Your urine should fall in the 6.8 to 7.5 pH range.   Please keep in mind that the ph changes depending on what you eat and when.

References:

National Institute of Health – Calcium in diet         http://www.nlm.nih.gov/medlineplus/ency/article/002412.htm

National Institute of Health – Magnesium in diet: http://www.nlm.nih.gov/medlineplus/ency/article/002423.htm

National Institute of Health – Potassium in diet:     http://www.nlm.nih.gov/medlineplus/ency/article/002413.htm

PROTEIN

One of the best things that you can do to help with muscular dystrophy (MD) is make sure that you are eating a proper diet.  Your diet should include a high amount of protein.  The muscles use protein to build muscle, so therefore a lack of protein will make the breakdown of the muscles accelerate in someone with muscular dystrophy.

It is estimated that the average man should consume at least 56 grams of protein per day, and the average woman should consume at least 46 grams per day.   People with muscular dystrophy should consume additional protein above the daily suggested limits.

Since people with muscular dystrophy are typically less active it is best to have a high protein diet.  This high protein diet will help with the muscular dystrophy and reduce weight gain.  Here is a list of high protein foods.

1.    Chicken/turkey

2.    Fish

3.    Cheese

4.    Lean pork

5.    Lean beef

6.    Tofu

7.    Beans

8.    Eggs

9.    Yogurt, milk, coconut or soy milk,

10. Nuts

With our busy lifestyle, it is easy to not eat properly.  Another method of obtaining the proper amount of protein daily are protein shakes, drinks and bars which are available at many retail locations.