UBIQUINOL CoQ10

I have done a significant amount of research to determine what helps my FSH muscular dystrophy.  During some of my research there appeared to be a connection to heart issues and many types of muscular dystrophy.  One of the best supplements to take for heart issues is CoQ10.  CoQ10 is a strong antioxidant and is important in cellular energy production.  Also, there have been a number of studies to show that CoQ10 materially helps a number of muscular dystrophies.

FSH muscular dystrophy is not one of the types of muscular dystrophy noted in the studies, but I thought it could not hurt.  So, I tried CoQ10 and it has developed into one of my core nutrients to deal with this disease.  I take Ubiquinol CoQ10, it helps my muscles energy and strength. 

Ubiquinol is a better form of CoQ10.  Regular CoQ10 converts in the body to ubiquinol, therefore, you get more impact with a lower dosage.  Also, it is recommended that people over the age of 45 take ubiquinol since it is absorbed better in the body of an older person.  It is important to get a fat-soluble CoQ10, since that is the most highly absorbed, or to take the CoQ10 with a fatty meal.

If I do not take Ubiquinol CoQ10 for over three days, my muscles begin to ache severely.   I would recommend anyone that has muscular dystrophy take CoQ10 at higher levels than recommended.  

CHIROPRACTIC

CHIROPRACTIC

I would think that most people are familiar with chiropractors and what they do.  There are people that have never been to one.  So, chiropractic is a natural health care system where the proper function of the nervous system will help the body self-heal.  Therapy is done to remove irritants to the nervous system to realign the musculoskeletal system.  

The most common method of treatment is by spinal manipulation and is primarily done for musculoskeletal complaints, other methods include physical therapy, lifestyle modification, and nutritional therapy.  Chiropractors believe in natural supplementation, which I will go into on other posts.

I was involved in a car accident where I was rear- ended on the freeway a number of years ago.  I was in substantial pain, meanwhile having great difficulty sitting, laying down, sleeping and turning my head left or right.  The doctor’s prescriptions of muscle relaxants had not helped at all.  One of the office workers suggested that I ago to a chiropractor.  I had a seen a chiropractor years before with very unimpressive results, so I was skeptical. 

Finally, after desperation, I went to go see the chiropractor that she suggested.  I called for an appointment and went to go see Dr. Bob Moulas D.C in Orange California.  Dr. Moulas suggested a treatment plan to get me fixed.  I noted that within a couple of weeks I was doing much better, after ten weeks I was better than before.  So, my chiropractor helped me tremendously and I continued to go for maintenance.

Many people will tell you that chiropractors are a type of alternative medicine that does not work.  I can tell you from my experience if you find a good one they can a tremendous help.  Most people go to a chiropractor due to back problems, car accidents, and sports injuries.  Anyone that has muscular dystrophy has to go for another reason.  As the muscles atrophy and are damaged, the bones get out alignment very easily.  Minor bumps and falls only aggravate the misalignment.  So, my chiropractor has been a life saver.  I would have been immobilized years ago, without his help.   

POSITIVE ATTITUDE

A positive attitude is the one attribute that will help you fight this disease more than any other.  Yes, if you have muscular dystrophy you have a fight on your hands.  There are things that you can do to help manage the disease. 

I will outline in this blog the things that I have done that worked for me, and hopefully they help you deal with muscular dystrophy.  Those actions can help you deal with this disease until they find a cure….cures are being developed now for a number of different types of muscular dystrophy. 

People have asked me why I have such a positive attitude, even thou I have a major disease.  My response is I have thought about how much worse it could be under various other diseases.  I could be a quadriplegic or, worse I could have pancreatic cancer, which is a painful torturous way to go.  So, there are a number of diseases that are much worse.

I will admit that I was depressed at first, since I was very ill at the time.  The doctors informed me to get my affairs in order,   I asked how long they thought I had but they indicated that they could not give me a timeline.   So, I went to work researching what would help this disease.  Basically, I was not going to go down without a fight.

It is important to read books about positive thinking, also, there is quite a bit of information on the impact of positive thinking on medical issues. So, you have the ability to fight this disease and eventually win the battle!

DENIAL

Typically, the first reaction most people have to be diagnosed with muscular dystrophy is denial.  That was my first reaction after being informed that I have muscular dystrophy.  They did not know exactly what type I had, therefore, I would be referred to neurologists that specialize in muscular dystrophy.  Since there were no prior cases on either side of my family, I thought that it could be a bad diagnosis.

I think it is difficult for most people to come to the conclusion that they have a terrible disease and possibly even fatal. The sentence is basically a future of disability, pain and reliance on others to take care of you, and death in some cases.

It also means a loss of income for the person impacted. If that is the main breadwinner in the family it has substantial impacts on the ability’s family to live as they have before.

In my case, my primary care physician that gave me the diagnosis referred me to UCLA Medical Center (UCLA).  UCLA is considered to be one of the best neurology medical centers in on the West Coast. The doctors that examined me came to the diagnosis that I did not have muscular dystrophy. They did not know what I had, but they did not think it was muscular dystrophy.

Now, I did not know what to think since one doctor told me one thing and UCLA told me that I did not have it. So, basically, it just confused me!

My primary care physician then referred me to the University of California, Irvine Medical Center (UCI) in Orange.  They performed the first DNA test which came back negative.  My neurologist at UCI was convinced based upon the physical symptoms that I have Facioscapulohumeral (FSH) muscular dystrophy.

My neurologist at UCI persevered and ordered a second DNA test. The second DNA test confirmed that I had FSH muscular dystrophy. This DNA test was done by the world’s best DNA labs out of the Netherlands.  The doctor indicated that this test was conclusive and no future tests were needed.

Sometimes it is very difficult to diagnose this disease, as I had a number of symptoms that were very difficult to diagnose.   I am grateful to the legion of doctors that worked hard to find out what disease that I have.  If you have any symptoms or suspect that the symptoms match, the first thing that you have to do is that you have to get a confirmed diagnosis.   It will be necessary to find a Neurologist that specializes in muscular dystrophy.

MUSCLE BUILDING SUPPLEMENTS

One of the most important things that you can do to deal with muscular dystrophy is to take muscle building supplements.    The most widely accepted muscle building supplement is creatine.  Creatine is a natural substance in the body, it also comes from some protein-rich foods such as meat or fish.

Creatine is typically used to improve strength, increase lean muscle mass and help the muscles recover after exercise.  It is widely used by athletes from high school to professional sports.  It is estimated that approximately 50% of college and professional athletes use creatine.

Not everyone responds well to creatine, it is not tolerated by everyone and may not work for every person.  So I would suggest that if you try creatine…. research side effects and start at a low dosage of one gram and build up from there.  Also, purchase high-quality German creatine, otherwise, you are wasting your money.  It is recommended that you drink at least a pint of water when taking creatine….water helps the muscles absorb the creatine.

I have found that taking HMB – Hydroxyi-Methybutyrate-Monohydrate works well.  HMB is a natural compound that is found in the body, it is created in the body from leucine.  Studies have shown HMB decreases muscle damage after exercising.  A good time to take HMB is after a strenuous exercise.

Creatine or HMB should be taken as part of a total supplement program including L- Arginine, and L-Glutamine.  If you are younger than 40, HMB may not be as effective as creatine.

FEAR

 I wanted to address fear as a definite part of dealing with muscular dystrophy.   Fear is something that everyone with a major disease deals with.  So, I thought it would be important to bring it up as an important issue. 

The doctors informed me that I had a type of muscular dystrophy. They were not sure what kind it was but it was a definite diagnosis.  It would be necessary to get my affairs in order. Basically, I had just been given a death sentence, along with pain and suffering.

Then the fear arrived!  How do I tell my wife?  I know she will be saddened and hurt.  That was the last thing that I wanted was to hurt her.  So, I had a major dose of fear how I would tell my wife.  My next thought was that this cannot be true (denial).  Yes, doctors are wrong all the time, which is what I told myself.

Then I thought what will happen to my family!    That is when the fear set in again, I was depressed and fearful for what would happen to my family and ultimately to me.  It would be a situation that I did not have control.  Now that was a very trying and difficult day!

So, there are many forms of fear!  I have probably experienced many of them.  Here are a few that I have experienced!

·         Fear of telling a loved one

·         Fear of the unknown

·         Fear of failure

·         Fear of dying

·         Fear of being a burden to family members

·         Fear of a loss of control

As time goes on I will cover each one.  I have learned to minimize fear, as it does not help anyone.  Everyone has fears; the difference is what you do with those fears.  Don’t let them continue to grind you down.  The way to tackle fear is to accept the facts, then take action to minimize the potential impacts.

SUMMARY:

Fear is a very difficult emotion to overcome.  I would suggest researching release techniques and watching videos on the subject on www.youtube.com. 

It may take a number of repetitions before you improve so it will be well worth it.  Also, you may have to do a number of different methods.  These fears have been ingrained in us since childhood it may take some time.

Here is quote from Theodore Roosevelt on taking the office of President during the Great Depression.   “So, first of all, let me assert my firm belief that the only thing we have to fear is…fear itself — nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance.”

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.