Tag: caregivers

Syringomyelia, Glory Hole-e-luiah

Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.comWhat a crazy, fun, adventurous and victorious day against Syringomyelia traveling to the Glory Hole Falls between Fallsville and Edwards Junction, south of Boxley Valley, Arkansas.  Unfortunately, my Syringomyelia struck before we even got started.  This time in the form of needing to do #2.  Mind you, I have never ever in my 43 years of life pooped in the woods.  Today was my day and I executed flawlessly.  The better news is that I didn’t find out if bears pooped in the woods with an accidental encounter.  I wasn’t too worried since the shear whiteness of my rear would have likely blinded any potential predator.

Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.comOK, back to the adventure… we arrived roadside on HWY 21.  There weren’t any stores, houses, bathrooms, places to get something to drink and limited cell service.  With Syringomyelia, this ups the risk significantly but I was not about to turn back.  We started down the trail and I knew this was going to be a BIG challenge.  The trail started out pretty flat but went downhill quickly and literally.  At that point it was clear why they called this trail ‘Moderate’.  My wife and I pushed ahead descending nearly 200 feet down in elevation.  The entire time as we descended down the uneven rocks, sporadic muddy spots, etc… I enjoyed the trail but I was also concerned about the trip back out and up.

Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.comWe arrived at the top of the falls and all of the struggle to this point was well worth it.  However, we still wanted to see the bottom of the falls as the water flows through the glory hole.  There were several slippery spots and now absolutely NO cell service.  We had to be very careful and I used a hiking stick for stability.  Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.com Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.comNow at the bottom of the falls, I have to say it was VERY impressive and it was very happy ending.  I silently thanked God and my wife for the strength and I also believe CBD helped get me get to this point.  We enjoyed the cool air and view.  It was AMAZING!  Nature sure can make some amazing scenery.

Now it was time for the trek up and out.  I knew that it would be hard but nobody was going to do it for me.  We climbed and climbed step after step.  I never thought about the entire task, just the next step.  We finally made it back to our 4Runner and were VICTORIOUS!  At the end I did nearly 7,500 steps for the day, climbed the equivalent of 36 flights of stairs (200+ feet in elevation)

Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.comSyringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.com

Ultimately with God’s love, my wife by my side, CBD in my system and a go get’em attitude… I can nearly do anything.

Matthew 19:26 NIV Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”

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

Syringomyelia – Trick or Treat

 Syringomyelia, Trick or Treat - SyrinGoWhat.com© 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.

Happy Halloween everyone.  I’ve posted on Facebook that I thought it would be kind of funny to make a Syrinx costume and dress up for Halloween but it didn’t quite happen.  I debated on what that would actually look like and was thinking it would look like an elongated balloon.  However, with my luck people would have thought I’m an Oscar Meyer wiener or some other kind of wiener.   Come to think of it, I’ve been called that a few times, HAHA!  You have to admit that this would have been a hilarious way to raise awareness about Syringomyelia.  Syringomyelia, Syrinx or Hot Dog - SyrinGoWhat.comPeople sure the heck wouldn’t have had a clue as to what I was and would have had to ask.

During my many years of dealing with Syringomyelia, this stupid disease does like to ‘trick’ me into thinking it’s better and then poof the next day WTH!  The only real ‘treat’ from it is a greater appreciation from all of what I DO have and those that have come into my life.

Syringomyelia - He Said, She SaidAs far as dressing up, my wife has helped me realize that I don’t have to cover up my pain nor ‘act’ normal… ok, I’m a bit weird in general.  🙂 Since being with her I’ve found more strength in accepting what I have and not having to hide from it or hide it from others.  It was a huge relief and she has made it much easier to deal with head on.  My wife wrote an awesome post called ‘Syringomyelia, Through the Eyes and Heart of my Wife and Caregiver‘.  I will continue to fight with the ‘trick’ being to continue ‘treat’ myself to life and happiness.  I truly hope that all of those that deal with this disease can and will do the same. 

One last thing, don’t let doctor’s try to ‘trick’ you into thinking that Syringomyelia is just in your head or the symptoms can’t be from it especially when there is evidence that they are.  Also, sometimes the best ‘treat’ments are the ones you find on your own.  Some of the ones I have found both beneficial and not so much can be found on my ‘Doing it Doc-cy Style‘ post.


James 1:17 KJV Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning.

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)

Syringomyelia, The 14 Day CBD Oil Experiment

Syringomyelia, The CBD Experiment - SyrinGoWhat.com

© 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.

This experiment was for my own personal interest, hope for relief and a possible alternative to prescription meds in relation to my Syringomyelia.

Below you will find my daily log of observations for 14 days as it pertains to my physical and emotional wellbeing ending with my wife’s observations and my conclusion (product name and link where I bought it). 

I entered into this with a very strong disbelief and skepticism due to so many ‘promises’ and doctors missing the mark on helping me deal with my Syringomyelia.

These are my results and I am not suggesting anyone try the same path without consulting with your doctor first or at least research on your own and start out with low doses as I did.  Not everyone will have the exact same results.

Day 1 – I received the CBD Oil (Tube / Gel Form) at a high 43.5% potency late in the evening for my Syringomyelia.  Prior to taking this first dose, I was considerably fatigued, achy, painful back, and weak legs from a long work day.  I’m starting out with a low dose of about 1 or 2 mg that is placed under mytongue, twice a day.  I took my first dose at 7PM and at this point, nothing really feels different but likely won’t until in the morning.  I will take a second dose tomorrow.   This tastes horrible but tolerable.

Day 2 – I woke up this morning a bit sick but I highly doubt it was related to the CBD.  I noticed something interesting when I got out of bed for work.  My legs and knee don’t hurt which they normally do and have for a long time.  I took my second dose this morning and have continued without leg and knee pain all day.  We will see if this actually begins helping my back.  My third dose will be tonight.  I’m still very skeptical.   

Day 3 – It’s day three and I haven’t noticed a lot of big physical differences / improvements but I’ve also been a bit under the weather that’s unrelated to Syringomyelia.  I’ve still noticed that my knee and legs don’t seem to hurt but I’ve been resting because of the previously mentioned illness.  I believe I may feel a little less stressed and tense. Tonight will be dose five, so I’ll stay positive but likely remain skeptical.   

Day 4 – Well here we are and I still seem to have pain relief in my legs and knee and I have a little bit more control in them as well.  The less stress and anxiety is also a relief that is VERY welcomed and is helping.  Since I’m not noticing any notable back relief quite yet, starting on day five, I will be upping my dosage to about 5mg.  I was going to wait but the dosage range is 1 to 50mg and I started on the low range first. 

Day 5 – Today I woke to something quite unusual.  For a brief moment, I actually had full feeling in my legs for the first time in over 10 years.  It was very brief but it almost brought me to tears.  I still have no pain in my knee either.  I seem to have a little more strength in my legs as well.  The bad news is that I felt like I could push myself and strained a little and this caused my legs to become weak again, lesson learned.  This CBD oil isn’t a magic bullet but it seems to be possible relief.  I will continue tomorrow at the higher dose of 5mg twice a day.

Day 6 – There seems to be a bit of a difference noticed.  Don’t get me wrong, I’m not out of pain but I seem to be getting more comfortable.  Tension headaches seems to be far less and / or manageable.  Back pain is still present and the feeling in my feet has semi-returned and now I realize that my toe hurts… now that I can feel it.

Day 7 – I’m at 5mg still with the same minor differences noticed.  Some sensitivities where once numb or limited have returned and made things more enjoyable.  I may increase the dosage by a couple more mg twice a day to determine if any more improvements will be noticeable.  I’ve decreased my gabapentin from 2 pills to 1 pill a day, nearly no ibuprofen and no pain pills.  I’m not sure if this may be counter productive.  However, hip and upper leg pain is much less.

Day 8 – Well, I have to admit, the intimacy with my wife is becoming more enjoyable from a mobility and sensitivity perspective.  I know that this is likely TMI, but intimacy is a key bonding function for partners.  For the partner, they can enjoy something other than just taking care of you.  For the person with Syringomyelia, it allows for a moment of being normal and enjoy their partner.  I’ve increased the mg to 7mg’ish twice a day.

Day 9 – This weekend, I’m planning for some outings with my family and to do some physically intense activities as well.  This will be the real test to see if there is any real difference.  I have noticed that since I’ve been taking the CBD oil, if I hurt, the recovery time seems shorter.  I definitely no longer have the pain in my knee nor the numbness under it.  Tomorrow and Sunday will be the big days.

Day 10 – Today was a personal victory for me.  It’s been a long road these past few months of setbacks.  Today I spent time with my family on some light to medium hiking trails including rocky inclines and caves.  The last week or so have been a nice change.  There are many things I’ve been changing but one stands out more than others and I have to admit, it’s this CBD.  I’ve increased my dosage to about 5mg 3 times a day instead of 7mg 2 times a day.  It’s still VERY hard for me to believe.

Day 11 – I accomplished 2 very important personal challenges plus a bonus this weekend.  I hiked / explored with my family and push mowed my entire 3/4 acre lawn.  The bonus was that I’ve walked about 15 miles or 30,000 steps.  25,000 steps today alone.  Not bad for someone that couldn’t walk more than a couple miles a day over the past several months because of my Syringomyelia.  Thank you God, I believe!

Day 12 – Although my body was a little sore today, I was quite able to function.  The last time with the level of activity like this past weekend, it would have taken a couple of weeks to fully recover.  My hip was killing me yesterday and today but it wasn’t related to Syringomyelia.  I’m already nearly back to my ‘normal’.  Legs are good, back is better, I can feel my feet and my spirits are up.  On top of this my wife and I have enjoyed more and more time together as a couple and like a couple plus more intimacy.  I’m so glad she is patient with me.  This experiment seems to be going well regardless of my remaining skepticism.

Day 13 – Today there is not a lot of differences from yesterday.  However, yesterday was a very good day compared to several weeks ago.  Anxiety is lower, stabbing pains are gone, hip pain from the weekend activity is nearly gone, no head aches, increased feeling in my feet and more.  If this continues with the fact I’m only down to 1 gabapentin, no prescription pain pills and minimal ibuprofen…. I may just think this CBD oil has some real possibilities.  Tomorrow will be the final day of my experiment.

Day 14 – This morning, I realized that I’ve been waking up in the mornings much more refreshed and ready to meet the day.  I haven’t had to take sleep aids very often anymore which is exciting.  Today I’ve experienced far less pain and any pain that I have felt doesn’t really stick around long.  I have continued sensation in normally numb or near numb legs, stomach areas and chest. These last several days have been a very welcomed relief from the feeling of a downward spiral to disability.  What a great ending to this 14 day CBD experiment.  I will continue to use this CBD.

Michael and ChristyWife’s Observations – Since using this CBD oil, my husband seems happier and far more chipper.  He’s been getting up early in the mornings and sleeping through the nights where previously he was up and down quite a lot.  He also doesn’t seem exhausted before bedtime, we watch more ‘Everybody Loves Raymond’ and cuddle time is EXCITING just like it used to be!  You would almost think that we were honeymooners again with all of the physical activities, wink wink.  He is more active after work and doesn’t have to immediately rest trying to recover from long work days.  He is once again able to enjoy activities with my daughter and I.  Don’t get me wrong, Michael has always been strong and amazing but then he started struggling more but now my daughter and I have our Michael back.  I’m honestly very glad we found this CBD Oil and that Michael tried it regardless of him being so darn stubborn and skeptical.

My Conclusion – For me, CBD Oil is helping and at this point I can not deny it.  I am simply amazed by the differences.  My back, feet, legs, stomach, chest, man parts and other areas are doing far better than they where a few weeks ago.  Heck, I’m even poop’n regularly… HA!  Oh yeah, no side effects noticed like craving snack cakes and Doritos, laughing at trees, dry mouth, drowsiness, running naked after chickens, eating peoples faces off, etc.

I suggest consulting with your doctor and giving it a try might be worth your time.   Again, this is NOT a magic bullet and doesn’t ‘fix’ anything but for me it’s a much better alternative to all of the other crap doctors have been prescribing me.  However, in their defense, there simply isn’t a lot of knowledge on Syringomyelia.

I did several weeks reviewing companies to trust or not trust, product reviews, ratings and I finally found the product for my personal experiment.  The CBD Oil I’ve been using is by iHempCBD.  I purchased their gold version at 43.5%.  However, I have found that Palmetto Harmony works as well if not better and is FAR more inexpensive.  

Please be VERY careful ordering from any company because I ran found some companies that weren’t up to my standards.  This CBD Oil does not contain THC therefore it’s available in ALL 50 states.


A big THANK YOU to my wife Christina for her support and Ty Colwell for helping put my humor to a graphic.

Philippians 4:19 ESV And my God will supply every need of yours according to his riches in glory in Christ Jesus.

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

Syringomyelia, The Walk of Pain

Syringomyelia, The Walk of Pain - SyrinGoWhat.com© 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.

This will likely not be unfamiliar to those that suffer from the same disease as I do.  Syringomyelia seems to be a not so friendly life partner.  When I think everything is getting better and I go to sleep, I wake to do the walk of pain once again each day.  

Sometimes I wish my body was like Legos so that I could detach the parts that hurt.  However, stepping on one of those Legos would be an entirely different ‘Walk of Pain’.  I don’t know about you, but stepping on a dang Lego has made me dance a dance that I didn’t really know I knew.

Syringomyelia, Stepping On A LegoWhat’s so interesting is how similar that pain is between a foot being imprinted by land mine Lego and the daily pain of Syringomyelia.  The only difference is I don’t think Syringomyelia has ever made me dance unless jumping like a funky chicken or the seat comfort shuffle counts.

Syringomyelia, Mr Potato Head - SyrinGoWhat.comMaybe if my body could be like a Mr. Potato Head so that I could have interchangeable body parts.  That could work but with my luck I would end up with Mrs. Potato Head’s spud implants or find my shoes in my butt compartment.  That indeed would result in a ‘Walk of Pain’.  By the way, I’m trying not to visualize walking with butt shoes.  

Ok you might be able to tell that I’m a touch A.D.D… SQUIRREL!  I just wish my attention could be as easily lost on the pain when it’s bad.

Syringomyelia Searching For Answers - SyrinGoWhat.comMy wife and I have been finding some interesting options that seem to be helping some that include some muscle stretches, different sleeping positions (no longer sleeping on my stomach), CBD oil spray, turmeric spice added to foods, drinking more water, redusing sugar (not from my wife), reducing gluten foods, reducing any alcohol, reducing caffeine, reducing sodium, along with a couple of other things.  The weight loss seems to be helping as well by lowering the pressure and strain on my back or spinal cord.  All we can do is try, right? 

My friends, please don’t give up on yourself because God will never give up on you.

I pray each day that God gives me strength and relief and He does.  I thank God for my wife, daughter, family and supporters.   I continually pray and hope that a cure can be found for all of us.

Matthew 4:24 NIV News about Him spreads all over Syria, and people brought to Him all who were ill with various diseases, those suffering severe pain, the demon-possessed, those having seizures, and the paralyzed; and He healed them.

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

Syringomyelia – He Said, She Said

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With Syringomyelia, there are two sides to every story.  The side of the person suffering from the disease and the person suffering that feels like they are unable to help.

When I met the love of my life, I thought I had Syringomyelia under control.  This seems to not be the case and it has become harder for my wife and I to accept.

The purpose of this story or blog is help those in the same situation to know that they are not the only one(s) in this boat without a paddle.

Syringomyelia - He Said, She SaidWhen I met my wife, it seemed that all of the issues related to Syringomyelia faded to the back of my mind.  Love is an incredible pain-killer.

Where we are now in dealing with this disease is not a place neither of us want to be in.  She has a perspective that is quite different from my own.  Even though that may be the case, I would NEVER say, “You don’t have Syringomyelia, so you don’t understand.”  We both suffer from this disease in our own way but together.  It’s truly a ‘He Said, She Said’ or ‘He feels, She Feels’ scenario.

It’s a lot like this for us:

  • He said: I hate hurting
  • She said: I hate that you hurt
  • He said: I wish the pain would go away
  • She said: I wish I could take the pain away
  • He said: I don’t want to talk about the pain and weakness
  • She said: Please talk to me about what is bothering you
  • He said: I don’t seem to be ticklish 
  • She said: Oh crap!  I am!
  • He said: I’m hurting
  • She said: It hurts me that you are hurting
  • He said: I can handle this
  • She said: I will be there for you
  • He said: I wish I didn’t feel helpless in fighting this
  • She said: I wish I didn’t feel helpless in helping you
  • He said: I want to be alone
  • She said: You can be alone but with me 🙂
  • He said: You should be with someone who is healthy
  • She said: Your love is the healthy that I need 🙂
  • He said: I’m tired of being tired
  • She said: Just rest, I’ve got this
  • He said: I don’t want to take anymore pills
  • She said: I wish you didn’t need to, but it helps and I’ll get them for you
  • He said: I’m tired of doctors
  • She said: I know that you are, but we need to get as much help as we can
  • He said: I love you
  • She said: I love you more

Syringomyelia - He Said, She SaidMy wife’s support is my life support and is better than any doctor, prescription, exercise or treatment that I could ever receive.  Neither of us understand Syringomyelia but we always try to understand each other.  She suffers with me and that hurts my heart.  It is just as hard for me to understand what she is going through as it is for her to understand what I’m going through.  The key for us is to listen to each other and TALK about it.  

For a person to simply discount the other’s pain because it’s not the same, is creating their own prison of pain.  I never want to be that kind of person.  As a person suffering from this disease, I hate it!  As my wife, she hates it just as much if not more.  

If you suffer from Syringomyelia or any disease for that matter, don’t think someone else doesn’t understand just because they don’t suffer from it too.  They are your cell mate.  Why let it be solitary confinement?  Why would you push people away and then say you are ‘alone’?  Open your heart, open your mind and for God’s sake open your mouth.  If they love you or care for you, then talk to them, love them and know that they are on your side.  

My wife isn’t a caregiver, she is my wife!

Proverbs 31:10-31 NIV An excellent wife who can find? She is far more precious than jewels. The heart of her husband trusts in her, and he will have no lack of gain. She does him good, and not harm, all the days of her life. She seeks wool and flax, and works with willing hands. She is like the ships of the merchant; she brings her food from afar.

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

Syringomyelia, Surviving the Tunnel

Syringomyelia, Surviving the Tunnel© 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.

So what the heck does Syringomyelia have to do with a tunnel?  Most with this disease or any related disease, you probably already made the connection that I am talking about the dreaded MRI machine.  It’s definately not the tunnel of love but can be the tunnel to life, as in saving it.

I personally do not like anything about this piece of very necessary equipment.  I honestly believe that I would be in a much worse situation if we didn’t have this technology but that doesn’t mean I have to like it. 

The anxiety leading up to it and not being able to move my body throughout the process is unsettling to me.  In order to deal with the anxiety, I have my own methods to cope.  Being a comedian, yep it’s mostly entertaining myself.  Sure a valium helps a little. 😀

So here is a list of things I do (some being just plain silly and / or nerdy):

  • Before going back, I give my wife a smooch like I was going into war.  However, before I was married, I would give a random stranger a hug and tell them “I’m going in and I’ll see you when it’s over”.  Side note: I’m glad no one had a taser but the older folks didn’t seem to mind.  Ha!
  • Star Trek Torpedo TubeI picture myself as Spock from Star Trek and being inserted into a photon topedo tube on the USS Enterprise in preparation to be launched onto a newly forming planet.
  • Once I’m in, if not listening to music, I start rapping silly lyrics to the rhythm of the machine.
  • Living in a Card Board BoxIf I am able to listen to music, I always request The Point 94.1 classic rock station and do a sing along.  However, I’m glad the machine drowns out my horrible singing.  By the way, the song ‘Living in a box’ is quite funny while you are in a MRI machine.
  • There are times, while my eyes are closed, I play that old video game ‘Pong’ in my head… back and forth to the rhythm of the machine.  It’s a heck of a eye work out.
  • Sometimes I stick my tongue out as far as I can to see if I can touch the top of the MRI machine while hoping that I don’t.
  • I start telling myself stupid corny jokes and even make some up.  I tend to crack myself up doing this and have to avoid laughing to hard because it would throw off such an ‘advanced’ piece of scientific equipment.  (Q: What does MRI and CAT scan equipment have in common?  A: It’s frowned upon if you pet either.)  badump pssss
  • Sometimes I just have to work very hard at not passing gas because I’m not sure how close we are to being done or if the MRI tech would hear it, thus cracking myself up again.
  • I even start thinking about the funny words for body parts and then say them three times real fast… again trying not to laugh to hard.
  • I have many other things I do to pass the time and stay calm, but it can be difficult to stay still with a body that spasm’s and hurts but somehow I get though it and will again.

Vampire Scary ChickEveryone has their own way to get through stuff and these were some of mine.  I always try to keep in mind that the MRI is simply a tunnel and once through, I will have a better idea what is on the other side.  I just hope it’s not a half naked hitchhiker with wings and fangs from a scary movie.  THAT WOULD NOT BE COOL! 

My opinion is that not everything is fun but you can make it funny.  Laughter is the best medicine even if it hurts to do it.

Oh yeah, on a side note, have you noticed that these machines sound more like a cat?  Meowwww meowwww meowwww meowwww… meow meow meow meow… just a thought.  Ha! 

Mizz Kitty Cat Scan - My in home 'cat scan'.

Mizz Kitty Cat Scan – My in home ‘cat scan’.

John 8:12 KJV Then spake Jesus again unto them, saying, I am the light of the world: he that followeth me shall not walk in darkness, but shall have the light of life.

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), fellow Syringomyelian 

Syringomyelia, through the eyes and from the heart of my wife and caregiver

Syringomyelia from the eyes and heart of my wife and caregiver© 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.

(A blog post from my wife and caregiver, Christy Davis) Syringomyelia is a horrible and debilitating disease. I had no idea just how bad this disease is until recently.

Michael, has harbored this since before we met. He mentioned it here and there since we met in November 2011, but never in much detail. He was so active and constantly on the go. I just thought he was okay and if not he would tell me. During our dating period we were ALWAYS on the go; from runaway beach trips, road trips to state parks, comedy club and other adventures. On May 25, 2013 we left early for Pensacola Beach, I thought it was just one of our spontaneous beach runaway adventures. Michael proposed to me on the beach, that night, as the moon was rising behind him. I had no idea! Luckiest girl in the world! We had a lovely wedding and a wonderful time on our honeymoon. It was around that time when I started noticing something wasn’t right. 

Syringomyelia from the eyes and heart of my wife and caregiverI feel extremely guilty that I didn’t ask more questions and learn more about it in the beginning. To speak the truth, it scares the hell out of me. I have picked up information from his website, other stories on listed forums and other websites. For about the last seven months I have watched Michael become more and more less active. During the week and weekend it’s a constant battle with pain and extreme tiredness. Kaylea and I do not like leaving him at home when we go out. Syringomyelia can kiss it. In the future, if Michael can’t go we won’t go.

I will do everything I can to help him and be there for him. From back rubs deep into the night Syringomyelia from the eyes and heart of my wife and caregiver(every night), doing my best to keep him on track with medicine, making sure he has healthy meals cooked with turmeric, ginger, etc. and doing my best to keep the house in order. I will not be like any normal caregiver, because I’m far from normal by all means. I prefer the word wife because I said “I do” to all vows including “in sickness and in health.” I will not be going anywhere. My roll does not change and I will always be here for him.

It relieves some anxiety knowing that we have an upcoming appointment for new MRI’s and will soon have an appointment with a neurosurgeon. I will be there for all of this, too. I will make sure he gets the best care before, during and after all procedures.

Psalm 18:2 NIV The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold.

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)

Syringomyelia Ocean Therapy

Syringomyelia - Ocean Therapy© 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.

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)

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 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.