From The Outside In

This last two weeks seems to have taken on a whole new face in the caregiver lives of Sam.  This blog was to be about Sam and her disease but we seem to be at a point that writing to this blog about us is a therapy that we get so little of.  I am certain, as always, that this spell will pass as we yank ourselves up again.  Bare with us as we give a view from our side looking in.  It may just be the added stresses of the fact three out of four of us are also college students and are in our finals week for this semester.  Maybe we too are just as overwhelmed as Sam is.  The purpose of this blog was to enlighten, in frankness, all aspects of the world of Shy-Drager, MSA.  This is the other side.

This is a darker time in our care of Sam, feeling like we are being bombarded with life.  Our view is clouded with all the new developments and new aspects of this disease we are seeing.  We are at a point that we are beginning to question ourselves and our motives.  We are here to assist Sam, to help her through her life as normal as can be in light of the situation and all this disease brings.  I am not certain when this all started but it seems it began with this last hospital stay.  We are tired, yet we feel guilty for being tired.  We feel guilty that we are full of life and mobility and it is Sam that is dealt this terrible blow, not us.  So why do we feel so out of sorts?  Is it the light we so enjoyed in Sam's eyes has began to fade?  Is it just that we are no longer just a companion, daughter, son, husband but officially full blown care-givers that sometimes has to be firm and fully medically educated on the disease?  Is it the darkness that we see more and more often is beginning to blind our vision of the sun ever shining again?  It is so hard to say what it might be, but we are there, we are depressed and feeling guilty and at a storm point with our emotions.  Like we have said before, our prayers changed one day.  The day that we knew there was no return from this horrible monster that has taken the life out of our friend, mother and wife....the day we pray for mercy instead of hope. 

No words can describe to anyone else looking into our world how bad it feels as a normal human to watch something so traumatic happening in a dearly loved ones life when there is no hope.  We as humans live for hope, hope of another day, hope of a child's laughter, hope of dreams.  Without hope, we simply fail to dream or see the light again.  We know it is not fair to feel the way we do, that our focus should be on Sam and making things good for her.  No matter that fact, we do feel just that, hopeless and alone.  In this all, there truly is just three of us, the caregivers, as one really is clueless and is there just to make sure she doesn't fall or get hurt.  The other three of us live her life, have intertwined her life so deeply into ours that we no longer can tell where her life and illness ends and our lives and wellness starts.  This all may sound horrible to those that don't understand or who have never been there but it isn't horrible really.  Sam starts to feel that she is a burden to us, that is not what we intend nor what we are saying, she is very far from a burden, she is our love.  We have just become tired and weary of it all and we are having a difficult time encouraging her when we are loosing our own courage.  We wouldn't give up this time with Sam for the world.  It is our own thoughts and feelings of helplessness that is our burden.  Our own feeling of inadequacy after this last year.  Where our efforts only see decline.  This disease affects so many more than the patient, although the patient gets the worse end of it, it does affect us.  It goes against all natures of us human in survival modes. 

As the care-givers fight our own fight or flight emotions, our fights begin to seem to be futile.  We will never take flight without Sam, that is not who we are.  Just our battles are becoming overwhelming.  From the outside looking in, the glass is becoming clouded and covered with our tears that fall like rain.  Sam said it best when she said sometimes we cry in the shower to wash away the pain where no one can hear.  So we emerge, with smiling faces, like a mask to guard our true dark currents that flow beneath.





Just Another Dirt Pile

Today has been an interesting day. I often wonder though, where does the day go? My days with Sam seem to be getting shorter and shorter yet I know we are spending the same amount of time together. Maybe because I do spend so much time with her I tend to not notice as much the gentle changes, the slight differences in our routines or of her decline. It is taking longer to do normal things that most of us take for granted; like getting dressed, combing our hair or brushing our teeth. I had not been with Sam since Tuesday, and I had noticed some differences in her body language as well as her cognitive functions but not as bad as today. The leaning left is more drastic, her head is rolling allot and conversations at times are repeated several times during the day. So often I can not understand her completely. Three days ago or even last week feels like last night to her. Sam says she feels like she has been beaten with a baseball bat then given eight quaaludes. To be honest, that reference is sort of what I see looking into her world too. I know she can not put into words exactly how she feels, no matter how hard she tries because there is no way that we can relate or understand as we have never been there ourselves.

So I worry. I know Sam and I have an agreement not to worry and agree that it is nothing but a thing and something that will only get worse. I know we are over the shock of it all, but do we truly ever get over debating the end? Sam and I spoke very candidly about the transformations today, like it was a normal every day talk that everyone has. I found it sort of odd and disconcerting that we have got to the point that we sort of laugh about it all. Does laughter become our defense to keep from sharing tears with each other anymore? Have we come to a stage that one feels that we have to protect the other? I have very mixed emotions about this at the time being. I think I am feeling very discombobulated and alone today with all these odd feelings.

I know Sam will probably read this as will Jasmine and I should not be saying these things for their sake. Maybe, in the make of it all, as I have always been the coordinator and sort of the unspoken alpha of this pack, I have finally reached a brief moment that I feel I am loosing the battle with myself as to feeling helpless. I have educated myself so well with this disease and tried to be the rock that this family needs and I feel like erosion from the elements have hit today. In the effects of the disease that I have seen in Sam the last week, no amount of education has prepared me for, I finally no longer have an answer for these happenings. In the past it seems like we have been able to make it somewhat better and adjust accordingly. Today though, I feel so helpless and feel that I am letting her down.

I think often times, the caregivers forget about themselves. I have been advised to be careful, to not let myself get too worn down or not to stop living my life in the process but I must have done so without realizing it. I would not change it for the world though because Sam is such a large part of my life and my world as well as Jasmine. They are just an extension of my family. I don't seem to be able to remember a time when I didn't have them in my life. Quite possibly that is the issue. As the outside caregivers so often do, we forget about us, we are so worried about making sure the patient and the family make it through their initial anger, fears and grief that we never take the time ourselves to go through those processes. This last week or so I have been angry at myself and others. I am the type of person that loves other people but I can't seem to tolerate their ignorance and lack of respect for people that obviously have a disease. I just want to go to a mountain top so high and tell the world to hush a minute and listen....to tell them "Listen all those out there, your lives may seem bad but did you know there is this disease, a disease so rare that they have no known cause so they can not find a cure yet. Did you all know there is no other disease that is so painful and debilitating and so long in it's process of death? Have you all no feelings? Have you all no compassion or mercy?" Why can't we get the word out there so easily as this? I am so angry right now at how unfair it just all seems to be. Maybe, just maybe the time has come that it is my turn to grieve.

Just another dirt pile, maybe. A house of crazy we do build, but pretty soon I think we will have to work on the mansion itself.

Yippee, Yippee, Yippee!!

Yeah, we are going to the zoo!  It is taking a great deal of planning, as all our endeavors do, to put together the next item on that bucket list of Sam's.  Sam has never been to a large zoo, as I have spoke of before.  Well, we are marking our calenders!  May 15th is the target day.  There will be Sam's mom and one of her sisters coming from Florida to share this time, as well as a niece and great-nephew from Tennessee, her grandson from Missouri, her daughter Jazzy and her fiance' Matt, her son Derrick, myself and two of my teens, and yes, even our hard working other halves will be joining us!  We will be going to the Cincinnati Zoo.  Outings like this take allot of planning for MSA patients.  MSA is typical with the patient not being able to remain hydrated so well, they can not regulate their body temperatures and being on the go tends to drop their blood pressure.  We will have to pack things like a cooler for liquids to keep on demand (instead of standing in long lines) and to do this we must call ahead and obtain permission as most of these type of places will not allow outside food or beverages.  Blood pressure cuff will be included to monitor the pressures as we always do, every few hours.  We will take a week's worth of medications because you have to be prepared in case something does happen.  We will have to have preferences for Sam with the bathrooms and make sure we locate all rest areas along the trails to get her cool.  My daughter said she is going to make sure we have portable fans...lol.  An umbrella would be good to go on her chair, but Sam refuses, she says she doesn't like to draw attention to herself.  Wow, I never thought I would hear that come out of Sam's mouth!  Sam is a go getting rock and roller that loves being different.  We may have to revisit this idea though as some of the medications an MSA takes to treat the symptoms make them sensitive to the sun and will burn very easily.  MSA patients usually can't feel when they are burning either, we will have to watch this closely.  This will be a two hour drive from where we live to take this trip.  While it doesn't seem long to most, it is long for Sam.  We will cope with muscle cramps and bathroom breaks along the way.  A trip like this is of huge magnitude and is a once in a life time ordeal for us all to be in such a group of family and friends.  What a great day it will be for us all.  We will make sure to take the cameras as I am sure we will want to share our day with you all! 

Like a bunch of kids....Yippee, Yippee, Yippee...we are going to the zoo!

The Bucket List

As we have mentioned before, we have a bucket list.  It is a list of reasonable (mostly) things that Sam would still like to do as she knows the end is eminent.  There is allot of mixed emotions concerning a bucket list.  Some think that having a bucket list limits your possibilities of how your day will be, that it hampers spontaneity.  I personally think that a bucket list is like a road map, it shows where I am going and what direction I need to take to get there.  If I see something special along the way then good, yet another thing that I have learned or seen.  So such is with Sam, a list of things she would like to see or do.  I think a bucket list is great for a person with a terminal illness, it is an inspiration of goals to look forward to.  The list is a way to occupy the mind to not dwell on the daily aches, pains and challenges so much.  It seems when we have a goal to look forward to it gives Sam a reason to fight on a day to day basis, a reason to be more careful in her movements as to not hurt herself or us.  A common goal that we all can look forward to even in some of those darkest hours.  The excitement that builds up to the day that we do have to plan for intensely is like no other motivator.  A bucket list will lead our lives with Sam, goals and rainbows to look forward to in the days of clouds and rain.  Do you have a bucket list?

Physical Therapy

It has been a couple of days since I have been here.  I apologize, school is taking up allot of time as we close down another semester.  I have been deep in thought through the time of school work and my daily life this week.  My thoughts have been centered around physical therapy for Sam.  Since not being as sick from this last UTI, as she is on the mend, we are seeing some large improvements on her strength.  Sam doesn't seem to need quiet as much assistance in her daily movements as she did a few weeks ago.  I personally think this is from the physical therapy starting back up but, I do also see how badly she hurts afterwards.  In MSA and other movement disorders, the muscles begin to get rigid and atrophy causing movement to be stiff and painful.  I know physical therapy has to be, but there does seem to me that there has to be another answer.  I have been thinking about water therapy, take the weight off of her joints while being able to move with the light resistance of the water to work against her just enough to maybe loosen and strengthen the muscles and joints.  I too have been wanting to do something like this as I have started aging (should I say my body has, my mind refuses to admit it).  My joints hurt and I am mobile...so, I think this weeks challenge will be to possibly go to the local YMCA with Sam and see what the cost is and good times that might work.  Maybe there is a water aerobics beginner class that we can hang out in the back line and do a lighter version of.  We will have to keep you posted.  Next up though is follow up with a pain management center on Tuesday and again with the neurologist on Wednesday.  We are looking forward to seeing about other options.

Meet The real Kris

Kris has been my best friend for almost 12 years. When I first moved to KY she was one of the first people I met. I was outside and she came out of her house madder than fire at her children. The first thought that came to my mind was "she sure would make a good drill sergeant".
Well, let me tell you, when you are fighting for your life, that's who you want on your side!
While my head was still reeling with the question of just "what is MSA and what does that mean?" Kris had already spent countless hours researching it and learning how she could help. She has created all kinds of medical charts ( blood pressure, weight, food and liquid intake,and a medicine chart to put all  medicine charts to shame). Medicine name (generic and common) dosage and description of pill. When we go to the Dr.'s we take it all with us in a binder. The Dr.'s expect to see it. It makes their job easier. Oh sure, they ask me how I'm doing but, then turn to Kris and ask what can we do?  Most Dr.'s don't even know what MSA is let alone treat it. I think they are jealous of her knowledge. I'm just glad she's on my side!
She has been with me through it all. The anger, the wanting to give up, the pain, wiped my brow, even lets me cry when I want to.
It has to be hard watching someone you care for slip away knowing you really have no control. I know because I watch them watching me. So, we've come to a quite understanding. We discuss all aspects of my wants and needs, my final wishes and how I would like things to be handled. And then.........We laugh, and joke, and cut up. We find the lighter side to whatever comes our way. Most of all we cherish the time we do have and snub our noses at everything else.
If ever you have the opportunity to meet or talk to Kris, tell her it's not nice to push people into bushes.

What an Awesome Day!

As I sit in my living room, working on school work, I get a text from Sam's daughter Jasmine.  We are so excited about taking the time to document our fun as well as information to share with our new online support group.  A tribute to Sam, a scrap book for Jasmine, their families and I.  This blog means more to each of us than the other could have ever imagined.  Hang with us as we transform our lives onto this blog as we have added Sam as a co-author today and will be adding her daughter Jazzy in the next couple of weeks.  Buckle up all, this is going to be a long ride because none of us give up easily!  Hope everyone is having a wonderful day.  Sam and I will be spending the day together tomorrow and we hope to bring to you our group pictures and fun stories.  Hope to have an update on the new appointments soon.  Take care and God bless that we all woke up today!

A Prayer Today

I heard you say today, that you frequently pray.

You say you pray every night to not wake up the next day.

I understand your prayer, your plea with God;

As your daily struggles grow great and broad.

With heavy heart and a burden so great,

You tire of the pain and the pills you hate.

I heard you say today, that you frequently pray.

I too dropped to my knees for prayer this day.

I pray for strength, your soul to keep;

For one more day to revel the love you reap.

I thank him for his will for you to carry on

For I know in your heart you are not ready to be gone.

I heard you say today, that you frequently pray.

Pray not for an end, but for Lord’s mercy should you wake up today.

                                                                                -Kristianna

What We Have Here Folks...Is a Failure To Identify (Part 1 in a series)

At the start of this blog, I had mentioned that we would go back into Sam's life and tell about the beginnings and our trails and errors along the way of learning the correct diagnoses of MSA.  We will go back off and on throughout the next several months and enter excerpts of the last ten years, in between the blogs of our day to day occurrences and developments.

 Lets go back ten years now, to a fairly young and vital, full of life Sam..barely 40 years old.  I know, those of you that know of MSA or any other forms of Parkisonism Plus know that the usual onset of symptoms are around 50.  Some of us just age quicker I guess due to all sorts of factors in our life.  Ten years ago, Sam started having pain in her legs, debilitating pain that caused her to not be able to walk much.  She ended up in a wheel chair back then as they learned of her issues and tied it into a diagnoses of Hep C and neuropothy.  During this time, she also went through a divorce and we watched a healthy young Sam dwindle away to a tiny 115 pounds.  Something was definitely wrong and we didn't see that it was more than what they told it to be, we had no idea.  She had been given only six months or so to live.  After her appointment where they told her of this diagnoses, we went out to the local botanical gardens.  I will never forget the conversation that went on.  She asked that I be an emergency guardian of her children when the time came and to take over the tasks needed to get her children to her family in Florida and take care of her affairs.  That was a very emotional time in our lives.  How do you deal with a terminal illness of one so young and so quick? 

Over the next year, many things began to happen as she became totally dependant on her daughter and I for all of her movement needs.  Next in that year came the blood disorder, her PT/INR (blood counts for clotting factors) dropped dramatically and she began to throw clots in her lungs and heart.  Daily shots of blood thinner that she gave herself in the stomach became a part of life.  After the first year, a wonderful method we learned of called rhyzotomies came into the picture.  This is a method that a shot is put into the nerves in the spine to block or kill off receptors so that pain could be managed (http://en.wikipedia.org/wiki/Rhizotomy).  After several treatments, it was a raging success and Sam continues on with her life with careful consideration that she couldn't feel as much and had to be careful not to hurt herself because she wouldn't know it and her blood levels could cause her to bleed out.  Next question came as to where the Hep C came from.  Well, it seems that twenty years prior to her first onset of symptoms, she was in a very bad car accident that required life saving blood transfusions and it was a time before it was common practice to screen blood donors for this disease.  Lovely, our luck is just as we call it...if it wasn't for bad luck there would be no luck at all.  A somewhat normal life ensued for several years to come after getting back out of the wheelchair.  Sam went on to finish raising her children, a beautiful daughter who is now in nursing school and a wonderful son that has served several missions with the military during our war time.  Sam also became a service manager for a local big chain restaurant, went on to college herself seeking degree in social work and started dating again.  That is our Sam, always the fighter, always defying those odds.  Fight on Mrs. Trooper, fight on!

It's Like Running in Place...

**CAUTION - SICK SENSE OF HUMOR OF MSA PATIENT AND CARE-GIVER AHEAD**    Sam started feeling a little better after she warmed up today.  That and sheer will power seems to drive her...errr, drive, now that is another story of the day.  As I had mentioned before, Sam is wheelchair bound 99% of the time and until we get the ramps and chair lifts installed, we are at the mercy of using the local big box store's power chairs when we go out to do errands and shopping. Keep in mind that Sam's chair is like a well tuned Harley and the store's chairs are like broken down scooters, they don't even drive the same.  Sam is DUI with the new medicine changes on top of the state of the chairs, DUI is not funny in a car, but in a broken down power chair, it can be quite comical.  I don't know what it is with people when they see a power chair, it is like a moth to a light, they seem to be drawn to it and feel compelled to step in front of her or form a line down the side of her as she moves slowly forward...oops, backwards...uh oh, forward again.  Dang we need a magnetic cling when they are in the process of tweaking her meds to put on the chairs that warn pedestrians to follow closely at your own risk!  On down the isles we weave, something catches her eye, me close at the edge of the chair she stops, dang my feet stop but my body is still in motion and I almost land in her lap as she laughs hysterically.  On down the isles we go again, by now we are drawing many sidewards glances as to the two hillbillies come to town and play on a scooter drunk kind of looks.  Welcome to Kentucky boys!  This is our favorite past time here don't ya know?  Geeze people, get a life!  Anyway, like a crow and a shiny object Sam's eyes are drawn again to a point of interest and flat stop again.  She laughs at me and says dang karma is a fun thing, you drop me in a bush last week and I trip you up and run over your toes....ahhhhh, funny Sam, not!  So after many a bumped butt (great way to get the attention of the cute guy in the cereal isle), many a near miss of me falling on mine and we decide it is a bathroom break time.  Now there is another level of comic relief in a public restroom at your local big box store when you have MSA advanced stages.  The cart of the wheelchair is loaded up with items not yet checked out, so we have to leave it at the door and trek through the long restroom to the handicap stall, me with a death clamp under her shoulder and her holding a wall.  There are the looks again, dang hillbillies in town looks.  Why is it they put the handicap stall all the way at the end of a half a football length bathroom anyway?  We get Sam all situated and I go out of the stall to wait....giggling...more giggling...what the heck?  Oh gosh, what has she done now.  I ask if all is okay and she said it was like riding a bucking bronc, the seat was loose and she would lean one way and fall the other as the seat would rock back and forth.  Nothing like trying to cath a moving target in an MSA person on a unstable seat.  She finally gives up and we go on with her closing comments being that she is glad she didn't fall off, but then again maybe she should have because we would have had one heck of a shopping spree for free!  Told you we have a sick sense of humor developed by daily challenges.  We now call them dirt piles to compact into yet another brick for our crazy house!

Not Having a Good Morning

Have been at Sam's since 9 this morning.  She is not having such a good day.  She sat with me while I "fixed her meds" for two more weeks which entails cutting some in half and doubling up others and planning out meds that have to be given every two hours.  She is very cold today and can't seem to warm up, add shivering to her normal tremors and she is now week and exhausted.  I can't seem to get her to eat either.  Piled her up on the sofa, after dressing her warmly, covered with a comforter and turned a portable heater on full blast.  After about half an hour, she finally says she wants Applebee's for lunch...lol.  She said she wants a spinach salad but we know that is not a good idea with her PT/INR just now recovering from being sick.  Green veggies drop her blood count too quickly.  Oh well, I think she just wants french onion soup more than anything...that does sound really good!  Sam's ever faithful companion, her Jack Russel Charity, is now piled up on her feet so seems to be working on helping to get her body temp up.  Off to get that french onion soup!

Sometimes It is Darkest Before The Dawn

As I have shared before, Sam had to go to the hospital this last week, fully depleted from her ever present nemesis...UTI.  UTIs are very common in this stage of MSA-C, from the self catherizations the patient must do multiple times in a day.  Every time that Sam is hospitalized, it takes a little longer to recover, a little longer to get her strength back and carry on.  The days that lead up to a hospitalization are the darkest, the days that we have to hold her up as she so often has in her life for us.  Sometimes though, from this darkness comes light!  We struggle so much in trying to get things done for her, the expense of living with such a disease is great, so trying to get what she needs in a timely manner does not always come to fruition. Out of this last stay, we have finally been offered a ray of light, a guide to show us a way to make her life better.  Sam is in a wheelchair now, about 99% of the time.  A power wheelchair is very heavy when lifted several times a day, even when taken apart.  We have been trying to get ramps done both out of the house and into her truck so that we can take her out and keep her spirits up.  To this date, she seems to be a prisoner of not only the disease that is ravaging her body, but of the house.  The last time I was able to take her out totally I hurt myself pretty badly, so we have not been out much since. 

MSA in any form is very painful as it progresses, the aches and pain from the tremors, the constant movement of flexing the muscles is like us having spent the day in the gym with a physical trainer...all day long!  Some of the progression of the disease is taken as just that, progression, when in reality it is from the pain killers and L-Dopa that has to be taken on a regular basis.  Always living in a fog can cause alot of problems.  At the hospital though, as we have been searching and praying for a better quality of life for Sam, God sent us an Angel, one of many to come these next days.  There is a pain management that is possible for MSA-C, since the neuropathy is extreme and no longer caused only by the nerves but from the brain, nerve burnings are no longer an option.  There is a patch, and other treatments that could allow Sam to have some better long term treatments of the pain without the narcotics she hates.  We have an appointment this month!

The angels did not stop there though.  Since Sam had such a long stretch this time of not going to the hospital (almost four months), her physical therapy had ended and her nursing care had dropped to about half an hour once a week to check her PT/INR (Sam also has a blood clotting issue and has to keep blood thin) and most outside help had ceased.  In again, from the hospital stay, comes a new appointment to bring in her physical therapy.  The day after she was released from the hospital, the therapist evaluator came to her home.  Not only will physical therapy start again twice a week, but an occupational therapist will be brought in.  For those of you just learning of this disease, this is an awesome thing!  It is the key holder to the jail that can open the doors again!  This type of therapist will come in and evaluate her home, be able to bring in contractors to make her bathroom handicap friendly, will put in ramps at the doors AND a lift for her chair on her car!  A prayer, a dream, an answer.

So out of the darkest hours come the brightest dawns.  Hope, life, dreams and prayers answered.  Let there be light! Thank you GOD!

I Know Who Holds Tomorrow

I have met some really wonderful people through the beginning of this blog.  I hope to develop many more to come.  For the ones who truly inspire, there is always a higher being holding your hand.  Keep the faith, keep the hope and look towards a brighter tomorrow!

YIPPEE!  Sam got to go home tonight.  She sounded so much better.  Now she can move around in her wheelchair as much as she can tolerate and not lay in a bed getting stiff.  Finally an appointment has been made for a pain management specialist.  I hope that they can do something so that she won't have to have all those darn pain meds all the time that make her so tired.  Tomorrow is another day, will do her nails for her and play some games.  Will be a good day again now that she is on the mend!  :o)

Love Movement!

Speak tenderly to them.
Let there be kindness in your face,
in your eyes, in your smile,
in the warmth of your greeting.
Always have a cheerful smile.
Don't only give your care,
but give your heart as well.
                         - Mother Teresa

Went back to the hospital after school today.  Sam is in good spirits, she hurts from laying in that bed so much the last few days and says she doesn't feel good.  I wouldn't feel good either after all the handling and poking and prodding she has gone through the last few days.  The kidney infection looks good, will follow up from home on that one.  They did the swallow test and looks pretty good, hopefully thickened liquids are not a permanent thing right now.  They can't seem to stable her blood pressure as well as we can at home, so will be good to get her home and back on a routine so she can feel as well as possible at this stage.  We have allot of things still to do on the bucket list.  Sam has never been to a regular large zoo, we plan on doing that soon before the weather gets too hot.  In this stage of her disease, she can not regulate her body temperature herself so we have to be careful to keep her either warm enough or cool enough.  So looking forward to the zoo trip!  Welcome home late today Miss Thang!!  I have all day tomorrow with Sam, I feel a Yahtzee tournament coming on...heck maybe even get into some cards with the card shark she is!

Hospital Stay

Spent a couple of hours at the hospital today with Sam.  She is doing well, seems to be getting better.  Played a couple of games of Yahtzee now that she is in a room alone.  We like playing Yahtzee, is one of her favorite past times. She usually kicks my rump, but today I had a little unfair advantage with her on several meds that are not her normal.  Hey, I'll take it!  They have her on thickened liquids while in there, and dinner had two beverages of this thickened state.  She kept daring me to try it, that it was really gross, to talk me into drinking some she kept saying "Go ahead!  As my best friend I owe it to you to share!"  Way to go Sam, quilt me into it...I tried it, wasn't so bad, sort of like a milk shake...actually tasted pretty good.  She laughed at me because I liked it.  I guess I liked it because it was a choice for me to drink it, for her it was not a choice.  Later in the morning today she will have some swallowing scans to see if she is swallowing okay, I hope she still is for her sake, she can't forgo her sweet tea.  Forever the southerner, can't mess with her sweet tea, don't thicken that for heaven's sake!

Funny Thing Today....

Ah our Sam.  Trip to the hospital, several hours spent.  No matter how badly Sam feels she is forever the joker.  You see, funny thing about the dynamics of  a group of care-givers with their friend or family member, you tend to find humor in about every step of every day; a little pick me up given to the other that seems to be at their ropes end or cried their last tear.  Not every day is an exercise in soul flushing, there is allot of things that we all can poke fun at ourselves and each other with.  I told Sam about our new blog today, she is excited for us to work on this as much as possible.  She asked if she could see it and if she would be able to add her own thoughts to our online journal.  I told her she was more than welcome but she had to keep some of our funnies to herself and not put it out there for the world to see because some people just wouldn't understand.  Falls have become quiet common place in our lives with Sam, we usually take then in stride, learn a lesson, treat the boo boos or take to someone that can if it is bad.  On Tuesday, we thought for sure we could take an outing, knowing full well that she didn't feel completely up to it, but cabin fever had set in for her.  True to form, my arms were loaded up with two purses, the extra bottles of waters that an MSA person needs for their constant thirst, our bag of tricks as we like to call her meds and other paraphernalia and her "stick" for walking.  If you can picture this, my rump propping open the door, a purse on each shoulder and arm full with both arms outstretched to block a front tilt or a back tilt should she stumble.  For some reason, she seems to think the 18 year old bush next to the walk will hold her should she hang on to it to navigate the steps.  On this day, we decided to test it out I guess, halfway into a fall she says "I'm going".  Really?  Half way through?  This is a full on left tilt, the only side I was not guarding so all I could do was gently guide her into that bush as she dies laughing and was laughing so hard I couldn't get her out immediately.  We got her up, brushed her off, checked for injuries and went on our way.  That evening, when her husband came home she told him I called her a name and pushed her in the bush.  LOL!  We played that for all it was worth, I fell into chatter along with her bickering about how she had pushed me to my limits and she pinched me so I dropped her in the bush.  I guess you would have had to be there to understand the funny in this.  To an outsider, these moments would seem like abuse (even though it was an accidental fall) and to any one other than us they may get offended.  So the joke continued today with how I tell her if she doesn't move faster I will push her out of the way and she tells again of the day she ended in the bush.

Today Starts a Documentation of Our Lives with Shy Dragers (MSA)

I hope that as we develop this page that we are able to comfort one another, share our experiences and shed light on such a rare disease.  It seems as this disease progresses and many syndromes appear, there is less and less time that is spent outside the home and so many past friends just fall away.  I don't understand, in such a time of need and support, why we as humans tend to ignore what makes us uncomfortable.  Isolation is the worst thing that can happen to a terminally ill person.  They have no hope when there is no cure and so little is known about the disease.  Support would be wonderful, a person to say they will stop by once a week or month or something just to chat.  An occurrence in the MSA person's life to give them to look forward to, a purpose for trying to get up and do what they can in preparation.  Instead, the text messages stop, the phone is silent, the social networks lay dormant for the person that once was so vital and gave so much of herself to others.  Why is this?  Why does she have to feel so alone?  I can not even imagine how it must feel to know you will die, not knowing how or which things will fail to cause it and then to add isolation to that fact.  My heart breaks every day even in my stress and emotional exhaustion.  I rarely see my own family and I struggle hard through school because my mind and free time is always with Sam.  Her children, her husband, myself, try so hard to make her life as full as it can be right now so that when the time does come, there is no stone unturned nor any item in her bucket list undone.  As this is written, it is a quick few moments between visiting my family and school work then back to the hospital where we had to leave her late last night after a suspected fifth stroke with her arch nemesis kidney infection also raging....the battle goes on.  My day will be spent at the hospital while her young adult kids take a much needed weekend away with their father and her husband works hard, even though retired already, in his own business to be able to pay the hospital bills and her 14 medications she must take daily.  I wish some one else would take the time to bring a little sunshine into her world as she did for so many years to yours.....

Decisions are Hard - Weekend has Been Long

Life is the sum of experiences that we encounter as we go through life. Day to day struggles and triumphs are experienced by all of the world's creatures. As human beings, when we encounter a challenge, we have freedom to choose how to react. Every decision that we make leads us down a different road. We will never come to exactly the same crossroads. Every decision the we make has significance. The tiniest choice that we make reverberates throughout the entire universe.

Our Sunshine and Strongest Spirited Woman We Know

Sam

Sam's story begins many years ago, almost 11 years ago when I first moved to Kentucky.  She was the first person that I met in a place that was so foreign to me after being from the deep south.  Sam was the lady across the street, we had kids fairly close in age so were naturally drawn to each other and destined to be fast friends.  We have been through allot in these last ten years, divorces, teenagers, jobs, good times and bad...but nothing prepared us for what has come.  Shy-Dragers, recently renamed as MSA (Multiple System Atrophy), a disease of unknown causes, a disease so rare that only 1 in every 300,000 people in the U.S. have it.  This is a disease that has no cure, a disease that causes most doctors to look at you like you have three heads when they ask what is wrong when we have to take her to the hospital when she goes down.  This disease, is a killer, no cure, no remission, no mercy in it's take down.  I thought that maybe our experiences could help others who are newly diagnosed, or others that can help us, who have already gone through it.  Sit back, grab a cup of coffee and at times a box of tissues as you begin with us a journey of writing therapy for MSA care givers.