It's been a busy week!

I am so thankful to be on Fall Break this week so I can help Mom and Dad get some things done around their house.  I've also taken Dad on lots of errands.  He enjoys getting out of the house and seeing a change of scenery.  We've been to doctor's appointments, the post office, Walgreens, Belk, and Walmart.  He also wanted to stop by the Senior Center to see what they offer.  He has spoken with several people around town about coming and hanging out at their place of business just to have some interaction and company.  It's hard to go from working 40-60 hours a week for years and years and constantly being around people to being home...bored and lonely. Everyone has been so gracious...the guys at Thomaston Ford always welcome him with open arms, offering him a coke and a seat.  They treat him like royalty.  They have also offered to pick him up anytime he wants to come out there and Mom doesn't feel like taking him.  Dad has not driven in about 6 months...by his choice.  He just felt that with his diagnosis, it was too big a risk to take in case of an accident.  His mind is very clear right now; his memory is good.  I have no doubt he wouldn't get lost or confused driving...I just fear that he is so physically shaky and week, and I don't trust his reflexes or response time.  I'm glad he agrees and is willing to sit back and be chauferred.  David Pasley has welcomed him at Piggie Park anytime he wants to hang out, as has Jeff Ellington at the Potting Shed.  Some days he just needs some stimulation and conversation, and I'm so thankful for all of these sweet friends who are stepping up to the plate!  

It was really tough to visit the Senior Center.  Dad has had  along relationship with this establishment through Big C.  He has done Diabetic shoe fittings there, diabetes education programs, flu shots, and more.  Donna Auth, the director, is a wonderful lady who has always welcomed the services we offer.  Dad got very teary today in there.  It's tough to go from the one who provides the services to the one who needs the services.  His loss of independence is tough to accept.  I know he feels like his purpose is gone, but he just has a new purpose and we have to help him discover that purpose so he can begin working at it!   He did discover that there is exercise equipment in there and a pool table, so if anyone wants to go hang out and play pool with him, please let us know!  He craves companionship and comraderie right now.  In fact, if any of you guys want to call him up and offer to pick him up and just go for a ride, that would be amazing!  Ride out to the bluff and look at the leaves, offer to take him to get his mail or run errands, etc.  He just needs friends.  I can't stress this enough.  

We also went to see Dr. Warnock today regarding Dad's reflux.  He was already taking 600mg per day of Zantac, the maximum dose.  However, his reflux has gotten nearly intolerable.  He has constant burning from the pit of his stomach up to this throat.  Dr. W switched him to a proton pump inhibitor, Protonix.  I am praying that works.  LBD patients cannot undergo anesthesia/surgery, so we need easy solutions...not invasive procedures which would require sedation.  If this continues to be a problem, we will have to consult with Dr. Hu at Emory to see what procedures are available that would be safe.  This is all part of the dysautonomia associated with LBD and Multiple System Atrophy.  Every part of the autonomic nervous system is affected...blood pressure, bowel and bladder function, digestion, heart rate, sweating, etc.  Dad says that the physical implications scare him much worse than the mental implications.  MSA and LBD can both be crippling diseases.

In the coming months, Mom and Dad will be remodeling their house to make it handicap-friendly.  The master bath will be designed to accommodate wheelchairs, etc. in case we need that down the road.  We are trying to prepare for a future of unknowns the best we can.  It's tough planning for financial what-if's, physical what-if's, and mental what-if's....some days we just can't let our minds "go there."  Through it all, God has been faithful.  His provision never ceases to amaze us.  Every time we hit a wall, he opens a door.  Every time we feel stuck, he frees us.  God is so good...He always has been.  But we're noticing His goodness more and more through these hard times.

My Childhood

My Childhood ( from Kelli's perspective)

I’ve been doing a lot of thinking since I spoke with my sister Ashley last night.  And while I have known that mom and dad need more help, I guess it really sank in for the first time last night.  I feel so helpless being an hour away and not being able to pick up and just go when they need help.  Countless people have asked me how my mom is doing over the last few months.  And my response has always been, “I don’t know how she’s still standing.”  This blog is designed to document our family’s journey through LBD.  But, I’m going to back up many years and tell you about my mom and how she got to where she is today, living with my dad and LBD.

My mom is a rock of strength, just like my dad.  At 30 years of age she was diagnosed with Systemic Lupus Erythematosus, AKA Lupus.  I was 7 years old, Ashley was 3 years old and Alex had just been born.  Needless to say, our world as children was rocked to its core.  I can remember my mom spending more time in a hospital than she was able to spend at home.  And I can remember that when she was able to be home, she was mostly sleeping.  Lupus was not that commonly known in 1980, and it took a while for the doctors to get the correct diagnosis for her.

Because she was so sick, I became a surrogate mother to Ashley and Alex.  Our dad worked 12-14 hour days to provide for us.  I can remember him driving through the Burger King or McDonald’s drive thru to pick up dinner on his way home.  He would drop off dinner, and then someone would come and sit with us while he went back to work until late in the night.  Eventually, I became old enough to handle the responsibility of watching Ashley and Alex by myself.  To be honest with you, I hated that responsibility.  I wanted to be out playing with my friends, not babysitting my siblings.  I can remember getting so frustrated that I just locked myself in the bathroom one day because I couldn’t handle it anymore.

Recently, Jeff and I were helping mom clean out some rooms in their house.  I came across some letters she had saved that I wrote her when she was in the hospital one time.  Reading these letters brought back so many good, yet really sad, memories:

Mom, Hi!  What’s up?  Did you here?  I had to get up in front of the whole school today and say my poem.  I got half way through and forgot it.  It was very embarrassing.  But I finally remembered it.  When do you get to come home?  I was very upset when I found out that you couldn’t come home today.  Ashley said she was going to beat up Dr. Balch.  Tell him I said to let you come home.  This has been better because we get to stay with Dad the whole time.  This is the longest letter I have ever written - I hope it’s not boring.  I’m sure it can get pretty boring up there.  I started reading your Lupus book last night.  It was kind of interesting.  Everyone has been asking about you lately.

I wrote that letter in 1986, when I was just 13 years old.  And it breaks my heart to read it today, knowing that all of us really had to grow up without our mom being there fully, through absolutely no fault of her own.  I can remember when my brother went through the roughest time in his life in 2006, we were all sitting in a room together and he said “I want my mom to be my mom and I want my sister to be my sister.”

This journey through LBD, while even in its earliest stages, has already taken a great toll on my mom.  My dad has always been her caregiver, and now those roles have been reversed.  I often ask myself how can God be so cruel.  And then I bring myself back to reality and I tell myself God isn’t cruel.  He has a plan.  And in my family’s darkest hour of need, I know that the Thomaston community is going to rally around my parents to help carry their burdens for them.  Because honestly, they are not strong enough to carry them by themselves anymore.

From a 7 to a 1

Dad called me yesterday at 4 p.m. crying.  He said he didn't feel right.  He said he'd called Dr. Warnock.

I rushed over to the house with Morgan.  Mom was asleep as she has been recovering from shingles.  As sweet as he is, he didn't want to wake her up and worry her.  He was shaky and jittery and looked lost and scared.  He said he felt like his insides were shaky.  I worried about his heart or if he was having a panic attack and felt like he was going to die.  He couldn't explain it.

I woke mom up and told them Dr. Warnock would be over when he got off work to check on him.  After a few minutes of visiting with him and letting him talk, he calmed down.  He said it was the worst he has felt since this battle with LBD began.  

The crazy thing is, the last few weeks have been amazing.  My brother and I had even been speculating that maybe he was healed.  Dad wondered the same thing.  Then, B-A-M, just like a nightmare that sneaks up on you, the LBD is back.

That's the nature of this ugly disease...it's a roller-coaster ride of ups and downs, loops and twists, good days, and bad days.  Patients can go days, weeks, or months seemingly normal and then have days, weeks, or months where the LBD is obvious.

Dad said he felt like he went from a 7 (on Monday) to a 1 (on Tuesday).  

He said he couldn't remember his phone number earlier in the day when he left a message with someone, and he had trouble getting his words out when he called his doctors for some information.  He had trouble verbalizing how he felt to me.  His voice was weak and muted like it was just prior to his diagnosis.  His tremors were worse, and he even had several whole-body jerks.  Quite frankly, it was a crappy day.  A day that scared him...a day when he caught a glimpse of what a future with dementia could hold.

How scary would it be to be told "You are losing your mind....you will lose your mind" yet to be fully aware of that fact?  It's one thing to lose your mind and not know it; it's another to consciously watch yourself slip away.  It's devastating.

He says that next time going from a 7 to a 1 won't be so hard because he knows what to expect.  But, who knows on a day like that if he will be able to process and remember that information or if he will feel like a lost, scared little boy all over again.

October is Lewy Body Dementia Awareness month.  Will you help us spread the word about this disease that is little known but all too common?  Visit www.lbda.org and read about this condition.  If you have end of the year charitable donations to give, consider giving to this organization.  The more research and education we have, the sooner we will have a cure. 

Going from a 7 to a 1 is not acceptable.  We have to end this.

Caring for the Caregiver

I wanted to share with you all what Mom and Dad's dear friend, Mary, wrote in a comment on my first blog post.  Everything she wrote is so very true, and I pray that you will all take it to heart.  If you choose to do so, you can reach mom at latexorose@gmail.com or at 770-584-7383.  We are eternally grateful for the countless prayers that have been lifted up, the uplifting cards that have been sent, and the precious friends who have taken food, gift certificates, and more to my parents.  No act of kindness, however small, has gone unnoticed.

From Mary:

 I am a big fan of Robert Bowles and am thankful that he is surrounded by such a loving and supportive family. I could write a glowing tribute to this sweet man; but since this is also an informative forum, I would like to switch to one of Robert's favorite topics: his wife.

More specifically, his main caregiver. Anyone who has ever done the day-to-day care of a loved one who is losing skills can attest to how difficult that task can be and how stressful it can be to one's immune system. Anyone who know Judy also knows that she has had a lot of her active years robbed from her because of an ugly case of lupus. (During which her "gift from God" took care of her.)

Thank God, it is in remission right now. But I am concerned about its rearing its monstrous head if she continues working as hard as she is right now. So, let's all think of ways we can take care of the caregiver. Robert, more than anyone else, would appreciate our doing that.

Let her know you're coming to sit with Robert one afternoon so she can go out and piddle around Wal-Mart. You couples: The husband can sit with Robert and the wife can take Judy out to lunch. Send her a certificate for a massage or a manicure. Ask her permission for you to pack an overnight bag so you can sleep near Robert and listen out for him so she can slip away for a night of uninterrupted (and thereby restorative) sleep. If you run into her downtown, ask about her even before you ask about Robert (Robert would love you for that). Be aware that she is grieving as she sees the love of her life slip further away on those "some days." Encourage her to cry on your shoulder, to talk about her pain, to reminisce about their years together bringing 3 little ones into the world.Pray for her and love her so she can remain physically and emotionally strong enough to take care of our dear Robert.

God's Provision

Throughout this journey, God's provision has been apparent to our family in often miraculous ways.  

One day, I hope I will be in the position to be able to share more details about this provision, but even if I'm not, rest assured that God has multiplied loaves and fishes, moved mountains, and rained down manna from Heaven at the exact moment my family needed it...time and time again.  He has taken my breath away at times from sheer amazement at His provision.  

Today was a wonderful day of provision for my parents.  I thank my Heavenly Father for that provision and know that there will never be a day they will be without His heavenly blessings.

One way God provided for my Dad was in giving him an amazing doctor.  Many of you read our story on facebook several months ago.  My "baby brother" Alex (who is 32) is quite a talented golfer.  Dad had been waiting 6 weeks for Emory to call him and schedule his appointment.  His disability benefits had been stopped until this appointment documented what was wrong with him.  We knew it was something serious (he was sent to Emory with suspicion of Frontotemporal Dementia), and we knew he needed to be seen immediately, but time dragged on.  

Enter my hero, Alex.  

Alex called a golfing buddy who just happens to be the CEO of one of Emory's smaller branches.  His buddy called the CEO of Emory Healthcare, and then Alex's friend assured mom and Alex that he should be getting a call soon.  He got that call within a few hours...and he had an appointment the following week.  What a relief we all felt when we got the appointment scheduled!  

Unfortunately, disappointment set in for me when I learned that he wouldn't be seeing the world renowned specialist he was originally referred to.  

Enter God's provision.

Instead, Dad was placed with a truly gifted and compassionate doctor named William Hu.  Mom and Dad love him more after each visit.  18 months of visits to a variety of specialists had yielded dad no diagnosis he could hang his hat on.  Dr. Hu recognized the combination of cognitive and parkinsonian symptoms immediately and diagnosed Dad with Lewy Body Dementia.  Dr. Hu trained at Mayo Clinic and is highly intelligent.

We were criticized by some well-meaning folks in the beginning about going to Emory...They said, "No!!  He needs to go to Mayo Clinic."  But, traveling to Jacksonville 3-4 times per year for a couple who is dealing with Lupus and LBD is a nearly impossible feat, especially when all of their children are working full-time jobs.  We felt good about Emory.  Dad researched and saw that Emory, UNC, and Mayo are the top three centers for LBD and other dementias, so we already felt confident about going there.  When God put us in Dr. Hu's hands, we knew that His provision was evident yet again.  God intended for Dad to be at Emory Healthcare.  And he intended for him to be under the care of Dr. Hu.  I will never doubt those two facts.

Dad had his third appointment with Dr. Hu today.  Dr. Hu wanted to know which symptom was the most troublesome right now:  the parkinson/physical symptoms, sleep problems, or cognitive symptoms.  Dad has been very cognitively stable these last couple of months and for that we are thankful!!  He has fuzzy days, but overall he is himself.  I know that this will not always be the case, so I am clinging to every great moment and holding on tightly!!  Dad said the physical symptoms were the most troublesome.  He feels pretty terrible 90% of the time.  He hardly gets out of bed, and when he does he feels miserable.  Dr. Hu started him back on a Parkinsons Drug, Sinemet.  He tried this before he was referred to Emory, and he didn't respond too favorably the first time he tried it as far as reducing his tremors or shuffling gait, but it did help his extreme neck stiffness/pain, so it is worth it to go back on it.  He is also switching him from a prescription sleep aid to Melatonin.  I like that Dr. Hu is conservative.  He likes to use natural approaches whenever possible...like the Jobst waist-high stockings which are doing more for his Orthostatic Hypotension than any other thing we had tried.  He also doesn't believe in starting more than one medicine at a time.  Since Dad's cognitive symptoms are stable right now, he will wait until the next appointment to begin the Alzheimers drug Aricept.  

Dad left there in good spirits.  It was a good day...full of God's provision.  Days like this make my heart smile.

~Ashley

Alex's Perspective

        As I sit here thinking about the amazing life my dad has blessed our family with over my 32 years, I cannot help but think of how the days are now.  All this due to the effects of Lewy Body Dementia....a disease that is slowly taking away the same abilities that once propelled him to work, give, and give some more, to support his family, and to give his community compassion.  Stories can be told of all the good he has done for us and everyone he has encountered, but my focus is to ensure that, aside from all the setbacks of LBD, we all remember that he is still here.  Most importantaly, he's still my DAD!!

    With a new family and a new job, time becomes an issue to travel to Thomaston.  However, with the great help of my miraculous mama, 2 great sisters, and 2 awesome brothers-in-law, I have peace of mind knowing that help is being offered to my father.  After coming home from work in Miami, Brittany (my wife), Madison (our one year old), and I traveled to Thomaston for a Sunday lunch and visit.  We made our way to Chili's.  While sitting at the table waiting for them to arrive, I look out the window and see "shuffle foot bobby" (offering my assistance in keeping a light heart in spite of the effects of LBD) running in the door.  Still the gentleman he always has been, he is rushing to open the door for his wife.  Showing a worn body and the effects of LBD, he plays with Madison and continually jumps out of his chair to play Madison's "pick up my toys I throw on the floor" game.  Then we retreat to the house for a priceless afternoon talk.  After countless attempts over the past year to visit with Dad, the tireless question of "Will he feel up to it today?" always seems to arise.  But as his only son, I have seen a fight in this champion when I mention the words, "We are coming for a visit."  Now, no matter how he feels, when we come to visit, he perks up.  Even if short-lived at times, these moments are what makes this a memory I am sure to never forget.

     The question that always seems to bug me is the fact that I will never know if Madison will get to know her Papa.  I can only hope she is so blessed, even if LBD may accompany.  As I think about the father I want to be, I cannot help but be taken back to my childhood dream, golf.  The countless hours we spent driving across the country and the concessions he made just to allow me to pursue a dream.  The dreams and values that were instilled in me are still present in his character today.  When problems arise, he is still there to offer his comforting voice.  The difference now is that advice may not be available that day.

      As this disease continues to try to interrupt our daily stride, we must stay steadfast in our faith and count the blessings we have been presented.  As our lives go on, I can only dream that I will continue to learn from my dad's unwaivering committment to never surrender.

A merry heart doeth good like a medicine...

As a pharmacist, my Dad knows the power of medicine.  As a Christian, he knows the power of this scripture.

A merry heart doeth good like a medicine, but a broken spirit dries up the bones.  Proverbs 17:22

I remember a calligraphy piece with this scripture (I *think* made by my Aunt Charlotte) hanging in the drug store for many years.  Never did I realize how true that verse would become in our lives.

We clung to it during my grandfather's battle with vascular dementia and my grandmother's battle with alzheimer's.  Now, we are clinging to it as their baby boy, my Dad, battles Lewy Body Dementia. 

Dad wanted to be sure I shared these things with you.  You see, he hasn't lost his sense of humor.  He laughs at his situation at times.  We all joke and laugh...it's one way to cope.  We can't control the situation, but we can control our attitudes.

LBD causes violent dreaming at times.  One night a few weeks ago, Dad was thrashing around and almost rolled out of bed.  Remember that the last time he pulled this stunt, he ended up with a glued together cheek, a broken nose, and 6 stitches above his eye.  We HAVE moved the nightstand since then, but we still don't want a repeat.  Anyway...the first two times he did this, Mom quickly grabbed his arm and held onto him.  The third time, she didn't make it.  He rolled out of bed, spun around on his feet, and proclaimed, "I hit a homerun that time!!"  It made them both laugh.  He wasn't referring to baseball, he was referring to his amazing feat!!  It sounded exactly like something my Pop (Dad's dad) would've said!!!

One day shortly thereafer, Dad realized he had forgotten to turn in some important paperwork related to the selling of Big C.  I said, "Just tell them you have dementia so you forgot."  We giggled at that, too! 

The other day, one of my first grade students prayed that God would make my Dad's "brain smarter."  It was so heartfelt and precious, but it made me and Dad chuckle.

I'm thankful I have a Dad who can laugh at the absurdity of LBD.  He can maintain a cheerful heart during trying times because he knows WHO holds his future securely. 

Now, the picture is not always rosy.  Dad isn't always laughing or joking.  The last few days his jerks and tremors have been much worse, and he has been physcially wiped out, hardly getting out of bed except to eat.  He  was holding a bottle of water the other day and he jerked involuntarily and dropped his bottle spilling it all over the floor.  He immediately burst out crying.  I'm glad he can face his sadness, too, and not just laugh it all off.

There are days our cheerful hearts are a good medicine,

 and there are days LBD is a tough pill to swallow.