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.

Through a Sibling's Eyes...

                                                                        MY BROTHER

As a three year old I remember holding my daddy’s hand as we walked into The Clinic to see my baby brother. I remember Mrs. Adams pointing out to me the baby that was mine. They all looked alike to me, and I couldn’t understand how she knew that one was mine. I remember holding the screen door open as the ambulance attendants brought my mother and baby brother into our house on a stretcher. (How times have changed!) These are the first things I remember in my life.

During our growing up years I was the quiet, shy, reserved “first” child. My brother was the “baby” with a happy-go-lucky attitude.  When Mr. Baskin learned that we were brother and sister, he said he absolutely couldn’t believe it…I worried about everything and my Robert worried about nothing.

And then he grew up. He owned his own pharmacy and excelled beyond his home borders in that profession. He had a family. He was a community and church leader. He is such a compassionate person, even now. He told me one time that every day as he drove to work, he asked God to provide an opportunity for him to help someone that day.

What I see and hear now is heartbreaking! Both of our parents had dementia. Our daddy had vascular dementia, and our mother had Alzheimer’s. Neither of those horrible experiences prepared me for Lewy Body Dementia. Although Robert has struggled for over a year, since March of this year he has crashed physically. When I talk to him on the phone, his cognitive skills are so encouraging. But after just a few minutes of talking, his voice starts to fade, and he says, “I’ve got to go. I love you. Bye.”  He goes blank.

I have read that an Alzheimer’s patient has a downward decline in abilities whereas with Lewy Body Disease, it is a roller coaster ride…there are ups and downs in abilities throughout the disease. I pray for lots of  “up” days knowing that as the disease progresses the down days will come more often and last longer. But there is the possibility of  “up” days even then.  I hold on to that ray of hope.

God is faithful. He has seen our family through other painful times, and He takes this journey with us. I am thankful for the many friends, neighbors, and church family Robert and Judy have who are coming to their aid. I’m thankful for my own friends and church family who do not know my brother, but still express support, concern, and prayers to Gary and me.

~Charlotte

What is LBD? How do we see evidence of it?

LBD is a distinct, common form of dementia affecting 1.3 million Americans and is highly under-diagnosed.  LBD has overlapping symptoms with both Alzheimer's and Parkinson's disease, making diagnosis a challenge.  Early and accurate diagnosis is essential because LBD patients may react to certain medications differently than Alz. or Park. patients.

Diagnostic Criteria for LBD:

* Deficits in attention, executive dysfunction, and visuospatial ability (Dad has a hard time focusing on something or learning new things; he used to thrive on change, now change confuses him and makes him feel stressed out.)

* Parkinsonism (Dad has occasional tremors, almost constant rigid/shuffling gait, impaired balance, writing changes--even worse than his usual "Pharmacist handwriting!", and speech changes.  Dad went through a period for several months where his voice was weak, almost whisper-like.  He also had slurred speech for a while.  These are not as evident at this time, but they come and go)

* Fluctuating cognition, attention, and alertness (LBD can vary week to week, day to day, hour to hour.  Some days Dad seems perfectly normal other than his parkinsons symptoms.  On those days I ask with great hope, "Are you sure you have dementia?"  He answers yes.  I ask mom and she answers yes.  I asked his family doctor, and he answered yes.  I guess I just hold out hope on the good days that maybe he was just having a bad few days and it isn't really LBD.  But, then LBD rears its ugly head again and I am back to reality.)

* Visual Hallucinations, delusions, apathy

(Dad has had apathy for over a year.  This was one of the first symptoms.  I tell everyone it looked like MAJOR depression, except that he wasn't sad and he was taking antidepressants and seeing a counselor and it still wasn't helping.  One day the psychiatrist added a second antidepressant still thinking it was depression.  Kim called me from his work and told me to follow him to the doctor...he was on his way there and was acting very strange.  I burst into the doctor's office in tears.  I said, "My dad is dying before my eyes.  I think he has Alzheimer's."  This was 6-8 months before his diagnosis.  In fact, I had been asking dad for a year or so if HE thought he had early alzheimers and he always said no.  His memory wasn't too bad, but he wasn't "my dad."  I felt like the twinkle was gone from his eyes and something wasn't right.  Dad has very little interest in anything anymore.  He mainly sleeps (sometimes as much as 16-18 hours per day) and watches tv.  Other than that, he doesn't have the energy or desire for doing much else.  His affect is very flat, with little facial expression oftentimes.  This is a parkinsons symptom.

I thought Dad didn't have hallucinations, but they have appeared since his diagnosis.  One night he thought his legs were gold and spotted.  Mom assured him that they weren't and he was ok with that.  Then, this very morning, he pushed a bell he has for Mom to know when he needs something.  When she went to check on him he told her there was a baby under his covers and he was scared it would suffocate.  Mom assured him there wasn't a baby there.  He quickly snaps back to reality and can even laugh about the hallucination later.  I know there will come a time when these hallucinations will be hard for him to realize, and he will probably think they ARE real.)

*REM sleep behavior disorder

Dad has not had a REM sleep study, so I don't have much information on this.  I know LBD often act out their dreams violently.  Dad's dreams have been more vivid lately.  One night he fell out of bed during his sleep and had to get 6 stitches above his eye, a laceration on his cheek glued together, and broke his nose.  His doctor at Emory suspects this was due to violent acting out of dreams.

*Severe Sensitivity to Antipsychotic drugs

Thankfully, he has not had to take any of these.  However, there is a possibility that the antidepressant combination he was on triggered one of these catatonic-like states.  He improved once he came off the extra med.

*Autonomic Dysfunction

This is by far Dad's most debilitating symptom at this time.  This is what first sent him to the doctor a year or more ago when the counselor he was seeing for "depression" realized he wasn't dealing with depression but something medical instead. He has Orthostatic Hypotension.  This means that his blood pressure bottoms out when he stands, and it often takes several minutes to happen so he can be walking along and pass out with little warning.  It can also cause his supine (lying down) blood pressure to be extremely high.  We have raised the head of his bead, and he wears waist-high support hose daily to help with blood pressure problems.  Drinking lots of water helps, too.  The hose have been the best remedy, and he has the best sense of humor about them.  He jokes about wearing his "panty hose" when we go out to dinner.  They give him a nice tan.  They are tight and very difficult to get on.  Neither he nor Mom has the strength to put them on him, so his faithful friend Phil Lawson comes down every morning and puts them on him.  What dear, precious friends we are blessed with!  Autonomic dysfunction can also affect other areas of the "automatic" nervous system including heart rate, breathing, and sweating.  We pray we don't experience those problems.

The scariest symptom is the falling.  There is little warning when it happens, and even if you are nearby you simply can't catch 210 pounds of dead weight as it drops beside you.  I try to remind Dad to sit down in the floor if he gets dizzy, but he can't process that at the time it happens.  He thinks he can walk to the bed and lie down, but he doesn't make it there.  These falls are very scary for Mom.  Imagine hearing a loud thud and not knowing if your husband is ok.  When this happens, she has to call Mr. Phil or my husband, Jack, to go help him up.  He has broken toes and his nose from these falls.  He fell twice a few nights ago and was very banged up.  Then, he fell again last night.  He has an artificial left knee and feels like he has damaged it from falling.  His shoulder is also terribly sore.  He winces in pain when he stands up and move.  This breaks my heart beyond belief to witness.  Isn't it enough that he has all these other problems?  Why must he now be feeling so much pain???  

Please pray for protection from falls.  He is slowly realizing he needs to stand beside the bed for several minutes so he can lie down if he gets lightheaded.  I am so fearful of a broken bone or, worse, a head injury from a fall.  We covet your prayers in this area.

I know I have totally overwhelmed you...feel free to ask questions!

I hate the "some days"

I HATE the "some days".

 

Yes, I said it.  I HATE the "some days".  The days when my daddy is not my daddy.  The days when I can't even look at his face because he's too sick to roll over in the bed to say hello to me.  The days when I say to my almost three year old son Sam, "hey, let's go wake PaPa up".  And Sam says "yeah!".  The days when I open his bedroom door and Sam says "wake up PaPa", and there's no response.  The days when I tap him on the back and ask him if he's alright.  The days that the only response I get is "I'm having a bad day".  I HATE the "some days".  Those are the days that I plead with God to give me my daddy back.

~Kelli

Today is a "Some Day"

I told you there are three kinds of days in our family right now:  a few great days, mostly good days, and those "some days" when my Dad is just a shell of who he was.

I sit here at his laptop typing this...in the midst of one of those "some days."  I came to help him with some important paperwork we have been promising each other we would complete for about a month now.  But he never feels up to it.  I was hoping today was the day, but it isn't to be.  Dad just got up at 3 p.m. for the first time today, ate a sandwich, chips, grapes, and his favorite (Blue Bell Strawberry and Homemade Vanilla ice cream), then immediately went back to bed.  He probably won't get up again til tomorrow.  He seems to be sleeping his life away and it isn't his fault.  He isn't depressed.  His brain just needs extra rest because it is sick.

That's what I have to tell my daughter, Morgan, who will be five in a few short weeks.  Papa's brain is sick.  She prays for God to heal his brain, and oh how I hope those prayers are answered.  We are a family that believes in prayer and that Jesus still heals.  Don't think that just because we have accepted LBD as his current diagnosis that we have accepted it as his death sentence.  Our God is still in the business of healing and until each of our final breaths, we will pray and believe for healing each day.  My little Morgan reminds me that Papa's brain CAN be healed.

I'm blessed that Morgan has some good memories of a healthy Papa, too.  My heart breaks when I think of my sister's 33 month old son and my brother's 11 month old daughter who may never know or remember a healthy Papa.  It just doesn't seem fair for a 64 year old man to be robbed of enjoying his grandchildren.  Or for his grandchildren to be robbed of him.

On those "some days" like today, Dad gets out of bed looking confused and scared...like a little boy who is lost.  I ask him how he feels and he says, "blank."  I say, "Do you feel confused?"  

"No, I just feel blank."

Then, he shuffles with stooped shoulders and unsteady gait to the front of the house for his meal, checks the mail at the box, and gets back in bed.  Lewy Body Disease combines symptoms of both Alzheimers and Parkinsons.  It's like a double whammy...takes away your mind and body all in one fell swoop.  The shuffling is one of the Parkinsonism symptoms. 

Behind every rain is a rainbow...somewhere.  You may not see it right away, you may have to look for it.  But it's there.  It's God's promise.  Behind every "some day" is a better day.  It will come soon.  Chin up.  Dad will be better tomorrow.

~Ashley

Happy Anniversary!

Dear Robert,

Today, August 16, 2012, we celebrate our 42nd  anniversary.  Little did we realize that beautiful Sunday afternoon what life would be like for us.  At 20 and 23 years of age, how could we?  Just like others, our lives have been full of blessings and challenges.

You are an amazing man and a precious gift from God to me.  I believe that God prepared us for each other from the day we were conceived.  I cannot imagine where I would be right now without you.

I call you "my blessing", and I mean that with all my heart and soul.  Even through the beginnings of our journey with Lewy Body Disease, you continue to bless our family with your amazing attitude.  You say all the time that "it is what it is."  You never question why this happened to you.  Last night I heard you tell a friend on the phone, "God is in control, and I am at peace."

During this journey others will learn a lot about Lewy Body Disease, our family journey, and hopefully they will receive their own blessing along the way.  May God grant us (your family and our many friends) that same peace that "my blessing" has.

With all my Love to "My Blessing",

Judy (Your Bride)



This is My Dad's Story

A few months ago, confronted with the knowledge that he may be facing Frontotemporal Degeneration/dementia, my 64 year old Dad looked at me and said, “I have a job for you if you can stomach it.  I want you to document this process so you can write a book one day that will help others.”

I have always loved writing.  Writing is cathartic for me.  My dad knows this.  What a blessing to be given this task.

I wasn’t the least bit surprised by Dad’s wish.  He has always been one of the most giving, selfless people I’ve ever known.  Yes, he could be a bear at times…just ask his former employees!  But under the occasional grizzly bear exterior lies a teddy bear with the biggest heart you ever saw.  For nearly 40 years, Dad owned his own pharmacy.  I can’t even begin to count the lives he touched through his business.  He went back at midnight for sick babies (even of families who weren’t his customers).  He held tickets for people who needed their medicine right away but couldn’t pay at that time.  If the pharmacy was out of a medication, he tracked it down at another pharmacy in town and sent one of us to get it so his customer would get their medication that day…usually within 10-15 minutes.  I had the privilege of working with Dad for the last 6 years of the pharmacy.  I wouldn’t trade those days with him for anything!  

Every December he and I would sit down and discuss who we wanted to bless that Christmas.  Some of our customers had run up quite a drug bill and just couldn’t make ends meet and pay their bill.  Dad and I would together choose someone deserving, and we would give that person a note that said something like, 

“Your account balance is now $0.00.  Your debt has been forgiven just as Jesus has forgiven us our debts.  Merry Christmas!”  There was never a dry eye from the recipient of one of those notes.

You see, that’s the kind of person my Dad is.  He gives wholeheartedly. 

Dad has served on numerous boards and commissions in our community and church.  In 2008-2009 he was even President of the Georgia Pharmacy Association—the highlight of his career and some of the best days of his life.

Sometimes I feel like the “glory days” are over.  I feel sad and hopeless since Dad was diagnosed in June 2012, not with FTD as we first suspected, but with LBD (Lewy Body Disease).  The teddy bear in a grizzly bear body is having his physical and mental health snatched right out from under his feet.  We don’t know how long or short the process will be.  We don’t know how painful it will be.  We don’t know what financial and physical resources will be needed in the future or how soon they will be needed.  What we do know is that a courageous, giving man of God who loves his family and his community is slowly turning into someone it’s hard to recognize on some days.  Most days are good, a few days are great, but those “some days” are devastating to watch.

This is a family effort, and Our first few blog posts will be in jumbled order.  We waited a few months to begin this blog because we needed to collect our thoughts.  We will try to use the next few posts to document Dad’s backstory, his diagnosis, and his recent months.  It is my family’s prayer that this blog will be a blessing to someone.  Whether you are a family member/caregiver, a patient with LBD or other dementia, or just someone who is going through a rough patch in life, it is our prayer that God will use the words He places in our hearts to speak to yours.

This is our Dad's story.  It is our honor to share it with you.

~Ashley

(LBD is a family journey...so each of us will be contributing to the blog at various points and sharing our thoughts, observations, hopes, and fears. My brother (Alex), sister (Kelli), Mom (Judy), Dad, and Aunt Charlotte (Dad's sister) will be the primary contributors.  I will indicate at the end of each post who the author of that post is.  We will also try to provide as much information about LBD as we can as well as research updates and news articles.)