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Syringomyelia Ocean Therapy

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I thank God for my wife (my caregiver) on a daily basis that always go so far above and beyond.  I wish I could be more of a physically ‘normal’ person or man for her on a daily basis as well.  She means the world to me along with our daughter. 

You may wonder what this has to do with Ocean Therapy or Syringomyelia.  Well, when we are there I can let my mind drift away from the thoughts and pain of the disease. 

Being in the ocean water allows me to be free from the constraints of some of my limits.  I am weightless and so is my family.  I can carry my daughter and play with her with ease.  I can hold The Davis clan - Syringomyelia Ocean Therapymy wife around my waist or on my back with no pain.  No, I’m not saying she is fat.  Ha!  When I walk in the water, there is nearly no pain as the sand beneath my feet absorbs my steps.  My muscles relax as the waves massage my body.  I can float and be free, which is how the ocean is my Syringomyelia therapy.

The ocean water is amazing and I always feel refreshed even by being near it.  Ocean water doesn’t truly heal but it is definitely my type of therapy. 

I highly suggest water therapy, especially salt water if you are able.  I truly think you would be shocked at how physically ‘normal’ you might feel.  You can free yourself from gravity.  You can free yourself from constraints.  You can free yourself from some pain. 

There are a lot of other benefits to ocean water.  Check out this little article from LiveStrong.com.  However, it doesn’t mention the strength and stamina training you do while trying to get away from sharks.  Just kidding and stuff.

A GREAT place to visit is Henderson Park Inn in Destin, Florida.  It’s our new most favorite place to go.  While we were there, we were spoiled to the core.  Most of all, my favorite therapy was just yards away… the ocean.

I thank God for the most simple things and He always amazes me by His blessings.

Isaiah 43:2 KJV  When thou passest through the waters, I [will be] with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee.

Please feel free to send me your thoughts or more resource links using my contact page.   Peace, Love and Pancakes… oh yeah and wishes of many ocean waves — Michael Doc Davis (SyrinGoWhat.com)

Why ask Why? Syringomyelia Shouldn’t be a mystery!

Confused about Syringomyelia treatment -- SyrinGoWhat.com

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I found that when working with doctors that I made several mistakes by assuming that the doctors knew everything.  No human can.  Part of their training is instilling confidence in their patients.  Some doctors translated this into ‘never act like you don’t know something’. 

This situation can be a big risk or no true path to dealing with the root cause of symptoms.  I’ve learned to ask the doctor questions when they suggest a treatment, a prescription or nothing at all.  The doctor should be able to answer any of your questions if they are providing an action plan.  My suggestion is to ask questions, mainly ‘Why?’. 

When you interview your doctor, you may just help him or her discover that they may need to learn a little more about Syringomyelia.  I have another post on my website called ‘Syringomyelia Caregiver Quick-Tip Pocket Guide‘ that contains a document from wstfcure.org.  This is a great packet to hand your doctor.

Here are some of the questions I try to ask:

  • Why would this affect that and how?
  • Why are we doing another MRI?
  • Why are you prescribing this medication and how will it help?
  • Why or how will increasing the dosage of my medication help?
  • Why am I being referred to a different or another doctor?
  • Why do I not feel like I am stabilizing or getting better?
  • Why would you think that my disease isn’t the cause of my pain?
  • Why can’t we try something different than what just treats symptoms?
  • Why would you ‘think’ you know and is it wise to base my treatment on that?
  • Why would you prescribe physical therapy as a cure if some of those activities could make it worse?
  • Why do you think stretching fixes my issues?
  • Why wouldn’t you want to know more about Syringomyelia?  Here is a packet.

Some times I just want to start asking random questions just to see how they respond:

  • Why is the sky blue?
  • Why did I have to wait so long?
  • Why is this room so dang cold?
  • Why would a person feel that another person’s time isn’t as important as their own?

There are plenty of more questions that I ask.  However, many times I seem to not be given enough time to ask them or feel rushed and I forget.  I need to remember that I am paying for a service and I should be satisfied by that service.  I need to MAKE the doctor think and learn before just throwing suggestions and treatments at me.  I AM IN CONTROL!!!  I need to always write down every question I want answered and my doctor will need to answer each one.  This is my life, my appointment and my money.  So now I ask you this… Why not ask why or what or how or when? 

Remember this my friends, you are in control.  You got this!

Deuteronomy 31:6 NIV Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; He will never leave you nor forsake you.”

Please feel free to send me your thoughts or more resource links using my contact page.   Peace, Love and Pancakes — Michael Doc Davis (SyrinGoWhat.com)

Is there support for Syringomyelia? Yes there is!

Is there support for SyringomyeliaIs there support out there for people with Syringomyelia and Arnold-Chiari Malformation?

Absolutely, there is!  

One of the biggest battles that went with accepting the fact that I had Syringomyelia was the struggle to find more information about it.  This was when I found out that what I had was as rare as my crazy type of comedy.  Yes, I am a comedian but I do take this and all diseases VERY serious.

I have found lots of groups, Facebook pages and websites with great information on them.  I put some of what I have found on the ‘Is There Support?‘ page on my website http://www.SyrinGoWhat.com.  I hope that this page is a good resource of resources that can help you too.  

We all need to help each other and help doctors help us.

Please feel free to send me your thoughts or more resource links using my contact page. — Michael Doc Davis (SyringoWhat.com)

Syringomyelia is NOT a walk in the park!

Syringomyelia is not a walk in a park© SyrinGoWhat.com, Copyright Protected. Feel free to openly share this link anywhere, but please ask before copying this content or parts of this content elsewhere.

For some reason there are a lot of doctors that under value a person’s statements when it comes to pain related to Syringomyelia.  Much of this is likely from the nation wide abuse of pain medications and the Obama Care requirements on physicians.  No I’m not making this political, I was actual told this by more than one physician.  Doctors are having a hard time juggling quality patient care and increasing the patient numbers they see to be able to stay in business.  This seems to result in doctors not taking the time or being able to take the time to listen and / or learn about Syringomyelia.  This means they really can’t work towards helping increase the quality of life for patients.  

Some of my many personal experiences with doctors have included:

  • Here take this for a couple of weeks and you should be ok after that.  
  • You should stretch and excercise more and you should eventually not have pain.  
  • If the pain is still there after a month of rest, we can temporarily kill the nerves in your back using injections.  (With already having a loss of sensation along with muscle control issues, this doesn’t seem like a good idea.)
  • The Syrinx in your Thoracic wouldn’t cause problems in your legs, we should work on your lumbar spine.

Syringomyelia is like walking in deep mudWell this is all just quick / short-term “fixes” that don’t really solve anything.  For me, Syringomyelia is NOT just a walk in the park, it’s more like a walk in thick mud!

Fortunately, an organization called Worldwide Syringomyelia & Chiari Task Force put together a Model of Care that that you can provide to your doctor or a doctor can download.  Let’s all help educate doctors and help them help us.  They can’t know everything… none of us can.

Jeremiah 29:11 NIV For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.

Please feel free to send me your thoughts using my contact page. — Michael Doc Davis (SyrinGoWhat.com)

Is it or is it not from Syringomyelia?

Confused about pain related to Syringomyelia© SyrinGoWhat.com, Copyright Protected. Feel free to openly share this link anywhere, but please ask before copying this content or parts of this content elsewhere.

Some of the suckiest (likely not a word) things about having Syringomyelia is that it’s difficult to know if what is going on with your body is related to it or not.  Since Syringomyelia affects your nerves and the muscles controlled by them, one can confuse a byproduct of the disease, something directly related to it or not related to it at all.  An example would be your back causing leg muscle weakness making you not walk in the way your body is designed causing your knee to hurt.  Once your knee hurts, you walk less and this causes muscle atrophy which causes more pain.  This type of knee pain and muscle atrophy wasn’t directly caused by the disease.  There are even times that side effects of the medications I have to take resemble symptoms from the disease.  With that being said, medications are not always the answer.  It gets easy to blame Syringomyelia for everything that hurts or doesn’t work right but I’m starting to realized this isn’t always the case!  I will continue to push myself, exercise, stretch, and work hard to walk properly.  Don’t get me wrong, Syringomyelia causes a lot of issues mentioned on the ‘What is it?‘ page.  This is NOT a disorder, it IS a disease that has NO cure but I will NOT just accept ‘It is what it is’ and I WILL live and love my life.  The lessons learned for me are that not everything is what it appears to be and always think more broadly than what your doctor will. 

Please keep everyone that is suffering from this and other diseases in your prayers.  God listens and God heals!  

Exodus 23:25 NIV “Worship the LORD your God, and his blessing will be on your food and water. I will take away sickness from among you,”

Please feel free to send me your thoughts using my contact page. — Michael Doc Davis (SyringGWhat.com)

Life’s little victories over Syringomyelia

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Life’s little victories for some are not the same as it is with others.  As a person with Syringomyelia these victories for me come in the forms of being able to wake up in the morning, lift my leg or legs to take a step, have a few seconds without pain or a moment when I can feel a part of my body that I haven’t felt in some time.  I count myself lucky.  There are some in much worse situations than mine that are just happy to be able to breath, not have a headache for a full day or even a few minutes or knowing when they need to use the bathroom.  Although I have been handed a deck that is stacked against me, I still feel blessed.  This could be far worse but God is working to keep my disease in check.  I thank Him daily and I do not blame Him.  For more on my story on how all this craziness started, just look at the about page on this website.

I thank you all for your prayers and love.  Keep smiling and laughing my friends.  Life is entirely too short not too.

Deuteronomy 28:2 NIV “All these blessings will come upon you and accompany you if you obey the LORD your God:”

Please feel free to send me your thoughts using my contact page. — Michael Doc Davis (SyrinGoWhat.com)

Syringomyelia Caregiver Quick-Tip Pocket Guide from wstfcure.org

Here is a great Caregiver Quick-Tip Pocket Guide from WORLDWIDE SYRINGOMYELIA & CHIARI TASK FORCE INC.  This organization is a wonderful group of people helping all of us and providing ways for us to connect to each other.  They are the first organization in the United States led by nurses and physicians to stand behind Syringomyelia as a disease!  There are lots of other materials such as this on their website — http://www.wstfcure.org.

Here is a great Caregiver Quick-Tip Pocket Guide from WORLDWIDE SYRINGOMYELIA & CHIARI TASK FORCE INC.

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