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.