Day 164-Wednesday's Medical Minute-Medical vs Recreational Marijuana

Good morning! I hope you all don’t mind that I’m testing out a new theme this morning. It’s called Scratchpad- let me know what you think, I simply switched themes and changed the background cover, I haven’t played around with any features yet.

Onto the subject for today’s medical minute. This past Sunday we started a discussion with Roxy from The Oily Guru on the subject of medical marijuana and how the FDA is starting to take notice of the benefits of CBDs for certain illnesses and symptoms. So I started reading about it on the site Leafly.com, which has an abundance of useful information put out by very knowledgeable experts on the subject, and I came up with a few questions to get us started and the answers they provided. I hope it helps us have a more open mind when it comes to the possible legalization of what God surely intended us to use (not abuse) as an alternative to poisonous chemotherapy and other medications.

 

Q. What is the difference between medical vs recreational marijuana?

A. The best answer to this question is the difference is those people who use cannabis to get high and/or reach some state of nirvana are recreational users. Those folks using cannabis to treat ailments and symptoms of such are medical users. Medical use requires a doctor’s recommendation, whereas recreational users need only be over the age of 21. Medical patients search for a particular strain to ease the specific symptoms they are experiencing, allowing them able to stay active and productive.

Q. Who can benefit?

A. Patients suffering a myriad of illnesses could benefit, however, first you have to know some science about strings and their effects, which strain is used for which symptom or illness. One has to know the difference between high CBD strains, High THC strains, understand the morphology of each plant, what is a terpene and more. It is such a complex subject and not one to go into willy nilly. This is why you must confer with your medical professional and have their recommendation-the doctors that suggest medical marijuana for treatment have done the research needed and will steer their patients in the right direction. There is so much to learn about all of this, by the time I finish my research on the subject, it will finally be legal in Texas! (one could hope) Leafly.com is the best place I found on the web for answering the most basic questions, there is not time enough in the day for me to read all of the necessary material to gain the knowledge one would need to make a competent decision. If I ever found myself in need, and it was legal here, I would leave it up to my doctor to guide me in the right direction.

Q. What states have legalized medical marijuana?

A. 39 states have legalized medical marijuana usage according to the website, and you can find that list on Leafly.com and also the 7 states that accept out-of-state authorization for medical marijuana. Unfortunately, Texas is not yet on the list, however, upon visiting DPS.Texas.Gov, I found out that through The Compassionate Use Program, DPS will license at least 3 dispensing organizations by September 1 of this year. The license will authorize each organization to cultivate, process and dispense low-THC cannabis to prescribed patients. Another site I found during my limited research was MedicalDaily.com which featured an article on the new benefits of medicinal marijuana published last year. Here is that link if you’re interested. Http://www.medicaldaily.com/medical-cannabis-2016-new-benefits-medicinal-marijuana-398935.

I intend to continue my research so I can find answers to questions you all may have, such as 1) What makes cannabis medicine? 2) What is CBD and THC and what are their effects? 3) What are the different strains and who do they benefit? So many more questions will arise and Leafly.com provides a plethora of information. I will seek out other sites as well, my first foray into the subject only showed me this site as the most informative, easy to read guide I found so far.

I hope this answered some of your questions and opens the door for conversation on this somewhat controversial subject. There are pros and cons, to be sure, but I feel like we should keep an open mind after reading some case studies of patients who have benefitted from using medicinal marijuana. As a user of essential oils, I know the benefits of using something natural vs chemical for my own body, not to say that traditional medicine doesn’t have its place. I would get off of all my medications if the doctors would let me, and Lord knows, Dave is about to benefit of the modern miracles of medicine himself, however, if I had convinced him how beneficial essential oils were earlier, he may not have been in need of this surgery. Who knows? I believe in their power, I am proof that they work but not everyone does. It is a science that, like marijuana, has been around forever, but few people really know enough about it to make their own decisions, relying on medical professionals to cure them with traditional methods. I thank God we have the choice to use any method we want, or all of them!

Let me know what you think. Comments and questions are always welcome, on this subject as well as how you like (or don’t) my new theme. I’m trying something new, so my site doesn’t get stale or boring. Hopefully, it is more user friendly, and I look forward to playing around with the features it comes with. See you all tomorrow for another Throwback Thursday; I’ve been pouring over pictures to provide you with something entertaining at the very least. I hope you all have a blessed and productive day!

 

Day 163-This Is My Essay Tuesday-Our Vacation Spot

Horace Caldwell Pier in Port Aransas
Horace Caldwell Pier in Port Aransas

As a wedding present, we were given tickets by my father-in-law’s best friend, who at the time, was the vice president of Southwest Airlines. The tickets were to a little place on the Texas coast called Port Aransas-a family friendly town on Mustang Island. This little trip began our love affair, however, it became dubbed as the vacation from hell, as it was plagued with mistakes and incidents that threatened to sabotage our good time.

First rattle out of the box was seeing David’s nervousness at being on an airplane, something he abhors. Back then, smoking was allowed, and he must have smoked a half a pack of Marlboros on the short 45 minute flight to our destination-Corpus Christi. From there, we had to try to rent a car to get to the island. This was our first trip, so we had no knowledge of the amenities, hotels, condos, or anything about the structure of the town, so we were essentially “going in blind”. His dad had given him his credit card so that we could rent a car, however, since his name was Robert Smyth, the rental place would not let him. They did not take cash, and we had no other credit cards at the time. So we were left at the mercy of a shuttle service in the form of a van they touted as a “limo” and that cost us $45 to get to the island.

This guy had no idea where to take us, dropping us at the first group of condos and hotels he thought were a good distance from town. Turned out to be 11 miles from the center of most everywhere we wanted to be. Knowing nothing ourselves, we went with it, and Dave reluctantly went to check us in to the Executive Keys…a small, but expensive condo close to the beach. Our first night on the island was spent eating sandwiches we made from the small sack of groceries obtained at the convenience store a few blocks down the road. It was all there was on that end of town, so we grinned and he promised we would find a way to get closer in the next day.

I believe it was me who came up with the brilliant idea to rent bicycles and attempt to ride them into town, not knowing the distance. Oh, did I fail to mention I was 5 months pregnant at the time? Sorry. Yeah, so you can imagine how funny that picture was, David and I, on bicycles, our “luggage” hanging from the handlebars-along with our groceries, trying to peddle down 11th street in the 90 degree weather, and me being five months pregnant. What a site to behold! Fortunately, a man in a pickup truck took pity on us and picked us up. He deposited us in front of what became our favorite restaurant, for a time anyway, before the prices shot up and the crawfish grew increasingly smaller by the year, it was called The Crazy Cajun. We decided to grab some lunch before heading off to find more suitable lodging for the remainder of the trip.

That first experience with what is known as a crawfish boil was to die for, and set the bar high as what to expect when eating crawfish from then on. Nothing has really compared since, although Floyd’s in Beaumont came the closest in my mind. Anyway, after lunch it was time to peddle our tired butts to somewhere more affordable to sleep, and memory fails what street it was on, but it was pretty far away from the beach. Still, we had to go with it, cheap motel or not. We were newlyweds and pretty broke at the time. Luckily, we were energetic and excited to be there, so we then decided to explore the island, as far as out Lamberfeeties would take us anyway.

Us at our wedding ceremony about to cut the cake
Us at our wedding ceremony about to cut the cake
The obligatory cake in the face shot
The obligatory cake in the face shot

Although I could not find one single picture from that ill-fated trip, I added a couple from our wedding ceremony which was only two months before. David has a better memory for the facts than me, and could have added a few details about the remainder of the trip that I can’t seem to wrangle from my addled brain. Besides, we have been back so many times over the 31 years of our marriage, one trip’s memories combine with others, and since no one thought to put words on the backs of the photos, I only have the year that the trip was taken to go by.

We started making annual trips as often as we could afford, we went back as soon as the kids were old enough to enjoy it and they have such fond memories, they consider it home away from home. Josh has not been back as often as Chris, due to the fact that he’s been gone for two years, however we have plenty of proof in pictures, that they shared lots of fun times together as a family in our favorite vacation spot. Pictures that show them playing in the ocean, visiting gift shops, museums and favorite places to eat, many different condos flying kites and building sand castles, or just being buried in the sand. We usually included a trip to Corpus, 30 minutes away, so the kids could experience aquariums and see the ship their granddad served on while he was in the service.

Over the 31 years of off and on visits, we’ve had many highs and lows, mostly good times and every time we approach the ferry to cross from Aransas Pass into Port Aransas, we get the same nostalgic feeling that ahhhhh, we’re home. The smell of the salt water, anticipation of what our chosen place of lodging will look like, palm trees gently swaying in the warm coastal breezes, knowing we will soon be relaxing with our toes in the sand and a drink in our hand, all serve to make this place our favorite, a fact that hasn’t changed since the very first trip- a comedy of errors that became the best memories of all.

 

 

Day 162-Motivational Monday-Proverbs 20:4

Today’s inspirational message comes from the book of Proverbs 20:4 and says:

“If you are too lazy to plow, don’t expect a harvest.”

Pretty simple and straightforward right? Basically, if you don’t do the work it takes to become successful, you never will be. That’s how I see the meaning anyway. I tried to capture the picture it was printed on ( I found it on a site called belgotec.com) but I couldn’t figure out how to copy the picture from Pinterest. Someday I’ll figure out this meme thing, for today you just get the plain old printed message.

I hope this inspires you to get up, get going and start planning how to make this your most successful year ever. I have to admit, last week started out strong for me, I got the word count I was looking for, had my week all planned ahead and things went great until Friday. I still got the assignments done but my word count was waaay short of the desired numbers. Still, I’ll just keep plowing along and try to do better this week.  I won’t give up, I’ll just dig deeper and work my plan to achieve my goals this week.

I got very little sleep last night, something I call the Sunday Syndrome, and as a result, my brain isn’t firing on all it’s cylinders this morning- even with my morning coffee. Add to that the fact that I did not get up at 5am and get the early start I did last Monday and…you get the picture. How about you all? Did you consider last week successful? What do you do to stay motivated all week? I’d like to hear it and any tips you have to share with me would be most welcome!

Church was lovely yesterday and then last night, I finally got to see the movie Miracles From Heaven. If you have not seen it, I highly recommend it! It was the best, most inspirational movie I have seen in a long time. Spoiler alert: Keep lots of Kleenex with you, you’re gonna need it! Then again, I am a very emotional person. It was made even more special for me because it is based on a true story about a family that lived in Burleson and the husband worked in Alvarado, close to where we used to live. It was a wonderful message that God is always with us and miracles happen all around us, every day, you just have to look for them!

I hope you all have a blessed (and productive) day and I’ll see you tomorrow for This is my Essay Tuesday.

Day 161- Plotting and Planning

This morning I am enjoying the look and feel of having a living room floor for the first time since we moved in a year ago! The guys did a great job and the floor looks wonderful! Don’t look at my messy coffee table, I’ve been busy.

Our new flooring, pretty isn't it?
Our new flooring, pretty isn’t it?

We are preparing to go to church, but I wanted to take a few minutes and tell you what’s on deck for the week ahead. I spent some of yesterday plotting what would go on the calendar this week, so when I sit down tomorrow morning, I’m not looking at a blank screen thinking, “what am I going to talk about today?”

It seems you all enjoyed last week’s daily features, if that changes, let me know and I’ll change it up. So tomorrow I’ll continue with Motivational Monday, this time I’ll feature a scripture instead of a quote.

Tuesday’s essay will be about our favorite vacation spot and how that came to be.

Wednesday’s Medical Minute is not clear yet. I’m hoping y’all provide me with some feedback concerning what you want me to discuss. If I don’t get any ideas from you, I’ll think of one on my own.

Thurday, I will feature another blast from the past. (Once I drag out some old pics, lol)

I’m hoping by Friday I have another story brewing for Flash Fiction Friday. Say a prayer I get my creative juices flowing!

That’s it, I want to wish my middle son Joshua a Happy Birthday and it would have been Elvis’s as well. You all enjoy your Sunday, and please keep us in your prayers as well, Dave goes in for his pre-op tomorrow. Thanks and see you all later!

Day 160-Free Days

Good morning everyone from a well below freezing Kimmy’s Patio! The temp here today starting out is 13 degrees! Brrr-I will do the bulk of my work from inside the warm house today, that’s for sure! The neighbor’s roof still has a dusting of snow from yesterday’s “flurries” we received!

I’ve decided to keep the weekend free for posting whatever I want, and for planning the week ahead’s posts. I may do things like comment/share other people’s posts or come up with my own on Saturdays, and Sunday, I’m likely to share what’s on deck for the week to come.

This morning, I have been chatting with Roxy over a t The Oily Guru, and we have had an interesting discussion on the use of CBD’s (cannabidoil)and their safety. This has lead me to explore medical marijuana usage in general, as it seems to have so many useful benefits. I encourage anyone interested to check it out for themselves…I certainly will continue to research all of the important information first as well, and I’m providing a couple of links-  her article, as well as one I found on the subject of vaping and CBD’s. (http://theoilyguru.org/2017/01/05/natural-vs-synthetic-2/) and (http://www.leafly.com/news/health/vaping-cbd-oil-vs-ingesting).

I hope you check them both out as they are interesting reading. I will continue my research as well and keep you posted on what I find out. One of my kids, Joshua, has been trying to convince me for years about the benefits of using marijuana, however, since it is illegal, I never really wanted to engage in that conversation. Reading up on the facts and educating myself on the use of medical marijuana, however, might prove interesting as well as beneficial to me and those I love. When you read the articles Roxy shares on her website, there is some mind blowing information that is worth further research, and I for one am intrigued. Stay tuned for updates and information as I get it.

I am looking forward to next week and the more “spring-like” weather we will be experiencing! As usual, comments and discussion are welcome, no judgements please- I am only doing research at the moment, I do not use mj in any form as of yet-if I choose to do so, I will make sure I have crossed all my t’s and dotted all of my i’s! I know the subject is very controversial and I can’t wait to hear the discussions it will spark.

I’m off to help my hubby as we take on the last big project for awhile, our living room floor installation. His surgery will be a couple of weeks from now, and he will be taking a break from home improvements for a bit. See you all tomorrow!

 

Day 159-Flash Fiction Fridays-

Welcome to Flash Fiction Fridays, where I will attempt to regale you with a tale of my own creation.  Flash fiction is gaining popularity among writers, from what I’ve been reading, and can be defined as a story which is told in under 1000 words, some editors preferring the length to be no more than 750. Here is my first attempt.

The Jetty

My own photo-taken on the jetty 

Just to be on the jetty again was such a thrill, sharing the same space with the seagulls and egrets was her idea of Heaven. By the time the excursion was over, Kelly Butler would realize just how close she’d come to becoming an angel.

Salty waves rolled over her toes as she searched the beach for the coveted shell de jour. Sand dollars. That was what Sherry wanted for her next project and Kelly was determined to make it happen. Sherry Campbell was her best friend in the world and Kelly just loved her creations. Restoring other’s cast-offs was her specialty and Kelly had been the lucky recipient of more than one of her home made treasures. Assisting her locate the perfect shell insured her chance the project would possibly grace a spot in her home.

It had been ages since she’d been back here in Nueces County and the smell of the ocean, along with the sound of the waves gently lapping at the shore had her feeling somewhat giddy. The beach was yielding no treasure at the moment though, so Kelly made the decision to explore the rocks that made up the jetty for a spell. Sherry seemed reluctant, wading and watching as Kelly wandered off, content to do things her own way-at her own speed. Kelly knew the jetty boat would return soon, however, and was filled with a sense of urgency at the thought of not finding the prized specimens in time.

They were on the beach side, so Kelly felt safe peering down through the cracks and crevices the jetty created, careful not to slip on the slimy algea and mosses that grew there. Finding nothing but hermit crabs and sea trash had her fearful the day’s quest would go unfulfilled, when Sherry suggested they try the inlet close to where the jetty boat docked. Game for adventure and eager to please, Kelly followed her down the long, cracked and somewhat crooked sidewalk atop the rocks that made up the jetty. Just as she was about to snap a photo of a great white egret, it flapped its mighty wings, startling her and causing her to slip over the side of the jetty.

Sherry turned in time to see Kelly, feet airborne as she slipped into the rocks and waves below. Shrieking, she ran to the edge and stepped down to the driest boulder available. As soon as the waves receded, she dove into the ocean, clearing the rocks and diving down in search of Kelly. Another round of waves crashed under the dock where Kelly had drifted, limp and unconscious. Sherry broke through the surface of the water, flailing and struggling to avoid the rocks as the waves continued to pound against them. Internally, she was freaking out, anticipating the arrival of the jetty boat about thirty minutes away.

Fighting the urge to struggle, she tried frantically to see any sign of Kelly as the waves kept pushing her toward the giant slabs of granite. Out of peripheral vision, she saw the strap of Kelly’s hot pink bathing suit top and started trying to swim in that direction. She had to reach her before she went under and was lost forever. Adrenaline took over then and with the next wave, her foot struck the rock and she pushed off of it, launching herself sideways, towards the dock. Luckily, at that moment, a lull in the waves allowed her to reach the support pilings, which she clung to for dear life. With one hand grasping the the wood, she reached out and grabbed Kelly’s floating foot with the other. Kelly’s head was bleeding profusely, but she had her and she refused to let go.

As she tried desperately to hold on to Kelly while holding the dock support, she saw the first of the other island visitors approaching the landing, as it was nearing time for the jetty boat to arrive. Sherry screamed “Help” for all she was worth and luckily, one of the beachgoers heard her cries and ran to the dock. After what seemed like forever to Sherry, a human chain had been constructed, leading from the jetty down to the closest boulder breaking the water’s surface. The next thing she knew, an arm encircled her waste and hoisted her and Kelly onto the rock’s edge. The next person in the chain took charge, grabbing Kelly from her arm as another person grabbed Sherry’s bathing suit straps and held on as she turned to climb up the next rock. The gentleman who had rescued Sherry held tight to her waist as he tried to hoist himself onto the rocks next to her.

The waves were relentless, threatening to drag them all back into the sea as they desperately clung to each other while simultaneously trying to make their way back to the safety of the jetty walkway. An exhausting fifteen minutes later, Kelly and her rescuer were at the landing, her rescuer attempting CPR. Sherry and her savior and the remaining beachgoers were alternately sprawled across the walkway, panting and shaking from the effort to climb their way back to safety. As the jetty boat approached the dock, the captain viewed the chaotic scene. Before he exited the craft, he radioed for assistance from the coast guard and grabbed his first aid kit. Docking the boat, his first mate jumped off the bow and onto the landing, racing to reach Kelly’s side.

Kelly awoke hours later, at the medical center, confused and disoriented, but alive. She tried to think but her head was pounding her limbs felt weighted down. As the room slowly came into focus, she saw Sherry standing at the rail of the hospital bed, a look of concern and worry on her face. “I thought you were shark food” she said and that’s when realization dawned on her and she asked her what all had transpired. Sherry told her of the saviors that had rescued them both and how all the beachgoers had pitched in to help. Kelly’s eyes brimmed with tears and she reached for Sherry’s hand. Sherry grasped it, and leaning over the bedrail said to Kelly, “I didn’t need the sand dollars that bad girl!!”

 

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Day 158-Throwback Thursday-Glamour Shot

Well, here goes nothin! I’m starting this here feature today with a lovely little gem from 1994.

Me (circa 1994) and my Glamour Shot
Me (circa 1994) and my Glamour Shot

This was when I came up with the brilliant idea to have a Glamour Shot done of myself as a present to my husband for his birthday, or Christmas…memory fails. In fact, this feature will be a challenge for me because that happens a lot-memory fails, that is.

Anyhoo, Glamour Shots used to be a thing back in the 90’s and I had a self esteem problem, still do as a matter of fact, and I just wanted to feel pretty and give him a picture of me when I was pretty…so, now he has that forever. Either he liked it, or was just trying to appease me, but it graced his desk for many years and now resides in our joint office.

Actually, there was two separate pictures, the other one might still be on his desk at work, I think I was in a different jacket or boa or something. I believe it was also a smaller 5×7 shot, part of the package I bought.

They were fun, and really turned out pretty good for the money they cost. Don’t even ask, I can’t recall the price. Probably around $50, which at the time must have seemed like a fortune to me! While scouring the web for information, just now, I found they are still available and can be purchased in packages for as low as $29.95! Haha, I also had to view a bunch of horrid and hilarious (as well as some nice ones) pictures featuring the “models”wearing hats, bringing friends, using props-even handcuffs, yikes!

I’m still kinda proud of mine and the way it turned out, I had so much more hair back in the day!! That was the thing, no matter how I fixed my own hair, I never thought it was good enough (still don’t) and I wanted a professional to make me look good.

So that’s it, do y’all have any Glamour shots you’d like to share? How about a little throwback pic of your own? C’mon now, don’t be shy, play along! I would love to see them! Meanwhile, as you dig through your archives, get ready to join me tomorrow for my very first Flash Fiction Friday, as I try to demonstrate my prowess at the craft. See you then from a very chilly patio! ❄☃

 

Rhyme Time…Ugh Not Again!

img_0691It’s so cold on the patio today, that I can’t go outside and play. Or work for that matter, either one, I was so looking forward to some outside fun. That’s not true, I knew what was coming, however, I know I should be outside running. Or walking, that would do me good, maybe inside the house I should. I’m really just trying to write more words, no time for exercise, hmmm look at those birds. Ok, enough of this mindless blather, I must go soak in a tub and lather. That’s a damn lie too, and you know it; I’m clean and I’m fed, I just don’t want to quit.  Writing that is, has it become an obsession? I’m thinking I’m  feeling a type of depression. Yes. That’s it, it’s because of the cold.  I know that it’s only a matter of time, before I can’t think of more words I can rhyme. So, if you’ll excuse me, I’m off to lament- on another day’s useless energy spent.

Day 157-Wednesday's Medical Minute-Reader Feedback

Today’s post was originally going to be called What To Eat Wednesday, where I would talk about foods I eat while following a Paleo lifestyle. After conferring with Miss Stephanie, however, I decided there is enough info out there in the blogosphere about food and recipes in general, and that I could do the most good and help more folks by talking about the health issues we share, and what can be done about them.

For instance, I have PKD- so maybe sharing details about it could help someone else with it.

Stephanie has a rare form of Muscular Dystrophy called Friedreich’s Ataxia- I could explain some things about what she goes through and how that might help others.

My husband has recently been diagnosed with stage 1 Prostate cancer- again, I could talk about how we arrived at this and how early detection might save another man’s life.

You get the picture, however, I want your feedback so I know how to help you as well. It seems we all have something or know someone who has something that affects us on a daily basis. How do we best deal with it? What are the best ways to treat it? What do you want to know more about or what can you share with me that readers might benefit from?

Say you have diabetes or know someone who does. I want your questions about that. I want to know how I can assist you, or someone you love. Maybe through my research, we will all learn something useful about conditions we didn’t even know existed. Before I met Miss Stephanie, I had never heard of FA. Now I’m learning all about it. In her case, diabetes is a side effect. It is a mystery she herself is still trying to figure out and deal with. Together, we work on her diet to find out what works to keep her numbers low. She also has heart problems because of her disease, eye problems that make her vision “snowy” and loss of balance and coordination. Are there others out there that may benefit from knowing these details? Probably.

That’s why I need your help. You tell me what you want me to cover on the blog. What do you want to know more about, or what questions may I help you get an answer to?

So, with all that being said, today I will discuss some aspects of FA in an effort to explain what someone else might be noticing in their child, or just to know what Miss Stephanie deals with every day.

Stephanie at home, showing off her new hair color
Stephanie at home, showing me that beautiful smile!

Friedreich’s Ataxia is named is named after the German physician that first discussed it in the 1800’s. It is an autosomal recessive inherited disease that causes progressive damage to the nervous system. It strikes approximately 1 in 50,000 and manifests in initial symptoms of poor coordination such as gait disturbance. It does not affect cognitive function but can lead to heart disease, scoliosis, and diabetes. Stephanie has all of these problems which require her to use a wheelchair, she also needs assistance with feeding, dressing and bathing, making her totally dependent on others to function.

The Ataxia of FA results from the degeneration of nervous tissue in the spinal cord, in particular sensory neurons essential (through connections with the cerebellum) for directing muscle movement through the arms and legs. The spinal cord becomes thinner and nerve cells lose some of their myelin sheath ( the insulating covering that helps conduct nerve impulses). In Stephanie’s case as well as others, symptoms began early in life, between 5-15, and began with muscle weakness in the arms and legs, loss of coordination, vision and hearing impairment, slurred speech, curvature of the spine, a deformity of the feet called pes cavus- or high plantar arches and carbohydrate intolerance (diabetes), though about 10% of those diagnosed develop type 2 diabetes). The heart disorders are atrial fibrillation and resultant tachycardia (fast heart rate) and hypertrophic cardiomyopathy.

It presents before 22 years of age with progressive staggering and frequent falling. Lower extremities are more severely involved. The symptoms are slow and progressive and after 10-15 years with the disease, patients are usually wheelchair bound and require assistance with all activities of daily living.

So, if your child is experiencing any of these symptoms, you need to get medical assistance. It is not their fault, they are born with this genetic problem. They cannot help it if they are stumbling or suddenly lose the ability to hold a spoon and feed themselves. You will require the assistance of many doctors, including but not limited to a pediatrician, cardiologist, nutritionist, neurologist, optometrist, ophthalmologist, and other specialists to deal with all of the conditions it causes. You will also need help from therapists, aides and caregivers, since managing all of these issues can be stressful on the family as a whole.

Since the cognitive function is still in tact however, patients can and do get involved in the treatment process, attend school, manage their social life, use the computer, watch television, read, and otherwise interact with caregivers and parents, doctors and aides, attend church and other places, go to the store, enjoy cultural events and even go on cruises! Stephanie is witty, funny and charming, loves almost everyone she meets and is loved in return. She deals with a lot of problems but remains strong in her faith and is thankful for what she can do and doesn’t focus on what she can’t.  She helps with running the blog set up by Camp Craig Allen, an organization who provides a place where children and adults with disabilities can go for fun, and therapeutic activities.

Stephanie put herself through college and managed for many years on her own, however, she had to move back in with her parents when the disease progressed to the point she could not function without 24/7 care. They reached out for assistance through a government agency called CLASS, who helped with issues like obtaining caregivers and medical equipment.

My hope is that the information I’ve shared here can help someone else who may be dealing with issues like Stephanie’s, and if you have questions, feel free to ask them. What I don’t know how to answer, Stephanie can fill in the blanks. She is extremely knowledgeable and wants to help others learn more about her disease.

For more information see MDA.org and NORD-National Organization for Rare Disorders

 

 

 

Day 156-This is My Essay Tuesday-Changed My Religion (Group)

Oh my goodness! First, before I start my essay, I have to say I’m shocked and just a little bit proud this morning. I surpassed my writing goal for the day yesterday (1700 words) and wrote a total of 1975 words! Woot! If I can manage that on a work day…

On second thought, I also got up at 5am yesterday, and today I did not. That just means I will have to work harder to get er done today-not everyday will work out perfectly, I’ll just take it one step at a time.

Ok, my idea for Tuesdays was to do an essay from one of my life experiences, kinda like Galina did last year on Hearts Everywhere blog, but not copy what she calls them, which is Life Clubs (now patented, I believe) At first I thought about Group Lessons, since they are things many of us go through, but my own take on them. Now I’m not sure, so I guess I will just write them and see what y’all think.

This is my essay for today-

I was raised in the Catholic religion. My Dad is Catholic and tried to instill the values and beliefs into my brother and I by taking us with him to church, as often as possible. I went through catechism and joined the youth group when I became old enough, and I never saw a problem with it. I loved our church and all that it stood for, and my Dad eventually joined the Knights of Columbus, but not until I was grown and married. I’m proud of him for becoming a Knight of some stature, now that he is in his early 80’s and his health is declining, he doesn’t make the meetings anymore. He does still attend church, even though he doesn’t hear as well.

When I got married, however, I learned that my husband was raised as a strict Southern Baptist. I attended the church of his grandmother, several times, but as a couple, we knew that was not what we wanted. My husband did not want to join the Catholic church either, so we compromised. We became Methodists and found a church we could both feel comfortable in. I won’t go into what we could have done or should have done when it comes to our kids, suffice it to say, they made their own decisions and are finding their own way to this day. In the very beginning, we lived in Haltom City and actually chose a Christian church, where we fell in love with our minister- Mark Fish. When he was called to serve his home church in Tennessee, we and the rest of the congregation missed him terribly, it eventually caused division in the church and we among other people, left and searched for another.

When we moved to Alvarado, some years later, we found a lovely little church lead by a charismatic minister named A.J. We found peace and joy, loved the little 100 year old church and would still be going, had we not moved again. When we made the move six years ago to Groves, down in southeast Texas, we tried several Methodist churches before we found the one that stuck. See, Methodists move their ministers around- they rotate them to other churches in an effort to reach and teach other congregations what the’ve learned about the last. Anyway, we usually find a church, fall in love with the minister, and then he gets moved. That seems to be the pattern and it’s not like we go every Sunday, but we do our best to attend frequently. The point is, we have been comfortable in the Methodist church and we hope to find one here that we both enjoy attending.

Currently, we go to United Methodist of Watauga, or at least I do, most of the time. My husband has not committed fully, and admittedly, I don’t go every Sunday. I enjoy it when I do and I have made a few friends there. Problem is, we are still undecided at the moment, that this is where we want our home church to be. If Cahill, the church in Alvarado, wasn’t so far, it would be a no brainer, but it is, so that’s out.  We will find one eventually, and then I hope we can both feel comfortable and make a commitment we can live with. Until then, I will go where I am now, and I’ll take him when it’s possible. After all, church is just the place you go to fellowship, when really, if you know and love God, he lives in your heart. You can worship Him anywhere. That is our belief, and I’m sure that in time, we will find a new church home.