WOW

I just glanced at this site since I have been ignoring my little keyboard to express any of my feelings and happenings. I looked at the bottom of this website to check out the page views and was amazed to see that I am over the 10,000 mark. Holy moley - that's a big number. It's even bigger when my writings have become more and more infrequent, lacking any regular schedule. Thanks everyone. I'm amazed. We'll fight Lewy while you root us along on the sidelines and take time to share with others. God bless.

Looking for the Good in 2013

I so much remember as 2012 crept into our lives that my hubby confronted it with a sense of zeal and optimism that usually isn’t quite as readily apparent in his personality. Bob was convinced that 2012 would be a good year for us with important positive changes in our health and diagnosis.

He was accurate in the prediction that 2012 would bring us lots of news affecting both of us in the health department. Obviously, the biggie for us was Bob’s summer diagnosis of Lewy Bodies Dementia. We had our moments of “Now what in the heck are we going to do?” and even “What in the world is God doing to us? This is nuts!”

Now, I for one have never been one to confront God or state my displeasure to Him. Those emotions had never been allowed to show to the Almighty. Bob always has felt more comfortable telling God what it is like. He even felt comfortable yelling at God about various cruddy happenings.

Bob and I are to a new level as we combat Lewy with all of our gumption. It’s vital to get information out in the vain hopes to bring money for research so we can squash this horrid disease.  This blog is just one way we have attempted to spread this news.

Our perspective on Lewy and even on life (Boy, this suddenly has a more serious tone to it) has swayed. We are trying to make the most of our days and search until we find the best in it. Bob and I will fight things together and celebrate our lives holding hands. We have many blessings, not at all limited to our family and friends.

We will start 2013 with even more of a renewed sense of security. God has blessed us. It is our responsibility to find the good in each day – not really a difficult task. May your outlook also be through those rose tinted lenses. Thanks for being part of our lives.  Life is good.

God Uses this Blog to Show that Life is Good

       Take time to look out and see all that is good!

Watching Life Approach

I’ve been skating through these winter days, not willing to totally succumb to this latest strain of influenza but not eager to fight it off either. A week ago, I lay comatose to the world, my body inert in a darkened bedroom. Life is slowly being restored, but I’m not sure if my brain is ready for such a change. As long as I am still, I appear almost healthy, but if my body is tilted greater that three degrees, coughing racks my body. Not a pretty sight.

Bob and I have needed to take our names from participating in many wonderful activities for the past week. We only made it to our night Christmas service for all of ten minutes. Days with the grandsons just weren’t possible this year. A few hours on Christmas day brought fabulous memories our way. Parties have needed our regrets as we pretty much ignored anything on the social calendar.

We really regret that we were unable to attend a special birthday celebration today of a dear member of our congregation who is truly ninety years young. Earlier this year, he said goodbye to his dear wife. The two of them were role models of an ideal Christian couple always willing to share their love and knowledge of the Bible. So although we missed the cake and candles, we’ve tried to keep that endearing love visible in our lives.

I wonder what people think when they look at us. We’re obviously not a poster couple for any of the newest diet trends, although we would be a darling “before” shot. I don’t want to become known for any hermit trends although that would surely be easy. I would hope that glances our way are not ones of pity for God has provided us with so many blessings. Without seeming morbid, I want people to be able to witness our deep love for family in a Christian home. (Is that laughing I hear out there?)

I need to lose my narcissistic tendencies to view the world of Lewy through the eyes of a caregiver. Bob is trying to fight off the encasing bonds, and my job is to support him. When Bob is getting stressed about bills, unhappy family members or pain, Lewy sneaks up behind him and drops a trance over him. I have to admit that I need more patience. I don’t need to always be the aggressor ready to go to battle against LBD. Sometimes, I must just gently be by his side and together to watch this disease approach.

Life is good. I can’t strive for constant perfection for then I miss the wonders of a job simply well done.

God Uses This Blog to Remind Me that Life is Good

          I need to slow down for things get blurred when living in a blender.

Four Year Olds

I just returned home after an enjoyable concert of small three and four year olds singing their heart out about the newborn birth and impending visit by Santa. They didn’t stand straight. Their voices barely broke through the sounds of a grand piano. Their garland halos were crooked and holiday attire clenched. It was absolutely precious. I sat in front of these little bodies and couldn’t wipe the horror of twenty other youngsters barely older than these darlings whose parents were not clapping away with pride in their faces, yet my mind returned to leading these small youngsters. It was quite a special performance. This was what Christmas is all about.

Bob and I have been fortunate enough to be involved in multiple Christmas gatherings. Lewy had us missing just a few of them and to those hosts and hostesses, I’m sorry that we could not gather with you that day. I hope they continue to think of us and even invite us to other parties. We are never sure when Lewy will show up, but we are doing are ultimate most to keep joy in our hearts. Social experiences are vital to Bob’s clutch on sanity. I accept that Lewy will interfere and try to eliminate any outings, but I resolve that Bob and I are not in hibernation.

Last night was fabulous as the Christmas cards were finished and Santa Claus 3 shone from our TV. The slim Christmas tree glowed with the homemade ornaments that warm my heart. Ollie’s skill at helping with the tree is evident since 14 ornaments hang from only 2 branches. The top fourth of the tree is darkened due to lights too stubborn to light. At the top is an angel made by Stephanie when she was the same age as my darling students. Christmas is alive and well in the Ichida home.

The grandsons help to add that extra twinkle in the holiday and extra bulk to our Visa card. The Elf on the Shelf is a December visitor. I love to hear my grandson describe the latest antics of this stuffed icon. His younger brother is convinced Santa should bring a LIVE crocodile-leaving Nanny (Non – E) that’s me, to find a live lion for under the tree.

So life here is very good. Although Lewy has provided a bit of a twist, it also makes Bob and I appreciate every instance of lucidity. Sometimes I feel that I have more problems with any cognitive skills than my hubby. We are here for each other. Thanks God! Life is good.

God Uses Lewy to Prove that Life is Good

         Lewy gives us the ability to focus on the good times while we ignore the not so good.

May I Introduce Lewy to You

Once again, the calendar keeps going even though I am doing my best to make it through the days. The possible blog topics are many because our household is always fun. Lewy wants to join in our holiday celebrations. Instead of dreading its appearance, I am learning to invite it along. God bless our friends who are coming face to face with Lewy and then decide to stay for the ride.

Last Saturday was another instance when Lewy struck when we were out of the confines of our home. We were seated with a group of Stephen Ministers when I noticed that glazed and non-blinking stare that indicates a visit by Lewy. Bob’s shoulders became slumped and he began a slight lean to the side. I knew what was happening, but our wonderful friends had never been introduced so intimately to Lewy. You know me. I can never turn down a teachable moment especially when I have some audiovisual available. Lewy tried to scare us off and he failed. People were politely interested in this “trancelike” pose. Occasionally, Bob can hear some of the conversations around him, but even that is getting more muddled for him. I wasn’t sure if he would remain as a frozen statue for 5 minutes or 5 hours. A fabulous friend, Carol, just pulled over her chair and gently rubbed his back. Judy pulled over to catch any falls while Jill, my newfound compassionate comrade, better described my feelings and needs. I had lost some of the kindhearted conversations with my dear friend Linda, but she just came and gave me one of those long and silent hugs that tingle you all the ways to your toes.

I just opened a Christmas letter from my favorite uncle who is known for his lengthy Christmas letters. At the conclusion of this year’s epistle, he added his personal touch asking for “God to give (us) His blessing, relieve the dreadful issues that test (our) faith and supply the strength and peace only Jesus can give.” When I am done here, Uncle Carl will be the recipient of one of my emails for I must reassure him that our faith is far from tested. Instead, Lewy has more firmly planted God’s presence in our souls. Look what Lewy is doing! Our marriage could not be stronger. Our daughter is a refreshing breath of the Holy Spirit. Her young boys offer a splash of encouragement that allows us to view a wink by Jesus. Bob and I have been given the opportunity to share information about Lewy. Awareness can only bring hope to the many people who daily confront this dementia. Oh Uncle Carl, our faith is strong and a beacon to others for life is what you make it, and life is good.

God Uses this Blog So I Can Prove that Life is Good

         Thanks God! Awareness can only make life better for us and others.

Holding Us Together

I saw a wonderful quote on Pinterest that fits in well for our current situation. It states,

“At the end of the day, you can focus on what is tearing you apart or what’s holding you together.”

Since hearing the diagnosis, it’s hard to not worry about what the future hold for us. Any of the forms of dementia is that scary, cloudy future dreaded by all.

Today’s events really explain the ease of focusing on what’s wrong with life. I had a moment of utter, “Oh no, God” as soon as I opened the door into our home, there lay my husband sprawled on the kitchen floor. I dropped what I was carrying and rushed to his side. He was unresponsive. It took 5 hours, or perhaps 5 seconds, to finally assure myself that he was breathing.

It’s not unusual for Bob to be so far glued into Lewyhood that he can’t be disturbed. No matter the pushing or shoving or shouting, he shows no reaction and instead sits silently staring into nowhere or in this case, lying extremely still on the floor. I frequently have stared at my daughter, searching for an answer, a positive suggestion on what to do next.

I was scared. I was worried. I was confused. I knew not what to do. The world really seemed to stand still waiting for some reaction by Bob. There was a sacred stillness in the air. Despite all of the emotions that were racing through my heart, I felt a comfort and sense of peace that can only come from above. I was not alone.

Bob finally started to stir. It took some time, but we finally got him to a vertical position. We made it to the couch as I was giving thanks to the Lord. I left church feeling sure that I would head to the Y for my previous yoga classes. While driving, a severe migraine took residence in my head. Seeing Bob on the floor only heightened the pain level. So forget the Y, head to bed and try to just live. Well, maybe I am exaggerating a wee bit.

So after a nap, we were all doing better. I still have a migraine and I’m trying to balance what is happening in my head. Bob fixed diner, but his brain is trying to settle. Lewy has been shaking away, finding humor in Bob’s confusion. So we are better than in the afternoon, for we have ripped Lewy away. We won this time and made life so very, very good.

God Uses This Blog to Prove that Life is Good

      With God’s guidance, we beat Lewy.

No Ho-Ho-Ho

Our home is somewhat Christmasized: two decorated trees, lights outside and mangers on the mantle. There is lots more needed to be done, but that is always the case with all of us. There are photo Christmas cards sitting on the kitchen island while the final draft of our Christmas letter is saved on my desktop. Knowing me, I’ll frantically try to avoid a December 27^th delivery. Two big tubs sit in our hallway reminding me that more is to be done. Those boxed snowmen and smiling Santas won’t be unpacked by any visiting elves.  There is lots of fun chores to be done, but instead, I sit in the family room somewhat in a daze.

The weather here would have Frosty melted in 4.2 seconds if we even had building materials. (That’s in reference to the snow, not the carrots!) The increased temperature has even brought this area national recognition. These nightly reports fail to include the fact that a weather low will soon attack our home with a vengeance. I could look for further input from a television weather forecast bursting with the use of colorful maps and live Doppler reports but none of that is needed for I have a less-than-secret meteorological wizard. Waa-laa; that’s me.

My creaky bones holler about an oncoming front that is bound to wreak havoc on my frazzled body. My layer of fat do nothing to ease the burden. Gosh durn it – it hurts. I tried to go for a refreshing walk with our spoiled pooch, but it ended with a sloth like shuffle. My coat hood was tightly affixed around my cute little face to avoid a vertigo tango through our neighborhood. For some unknown reason, anything more than a slight breeze causes a drunken foxtrot by yours truly. When the screeching bones mix with that vertigo twirl, I lack any luster of holiday spirit. It looks more like I’ve been in the holiday spirits.

I told Bob earlier that I’m tired of our physical bodies staging a constant mutiny. I want to partake in holiday fun but my rounded frame is doing its best to strike fun from my calendar. Bob’s body has similar disabilities and Lewy adds some unique personal characteristics. Today the HO-HO –HO was more like OH-OH-OH!

We’ll soon head upstairs to pretend a restful sleep will soothe us. Another nightmare or two will probably attack poor Bob. Pain pills will cause a drugged sleep that lacks any resemblance to soothing, yet tomorrow will be a better day.

I have my husband to help me make it through each day and I try to guide his body around the Lewy attacks. My bones and joints bring me far less distress than the cognitive threats to my honey. His happy memories of past holiday traditions are now twisted and out of focus. So, we’ll try to have the best of both: holiday traditions from years long past mixed with new activities matching our current needs. Christ will still be born in that stable and He still watches over me. Aah – life is good.

God Uses This Blog to Remind Me that Life is Good

           By writing out my thoughts, I put the Christ back in Christmas.

The Bounce, the Mouse and the Monkey

Stephanie and the boys came to visit this weekend, superb dates since they precede their birthdays only by a few days. We celebrated in style hitting all the headline locations for the preschool boys crowd.

We began the weekend with some time at the newish Yu Kids Island at the mall. There are tons of things on which to climb and bounce and turn and laugh. One enclosed space has big balloons floating through the air thanks to a fan. There are bounce houses and swingy things. We followed that with a dinner at Lou’s pizza with fabulous friends that we don’t get to see very frequently. That’s the nice thing about true friends. Even time can’t alter the good feelings when you gather together.

Today was tons of Christmas books and lunch at Steak n Shake. (Are you starting to get the feeling of my limited culinary skills?)  We hit a big craft show at a local high school however I had no cash and no checks and nobody took my charge card. It was good for finances I suppose. Then was the big birthday party at Chuck E. Cheese. The grandsons were not having a party at their home since they are new residents and don’t yet have close friends. Stephanie invited some local friends and family. Chris’ brother came with their three small fry. Bob’s older brother came. The shocking part was that he had never been to a Chuck E. Cheese before. Picking 5 PM on a Saturday night is like putting an autistic kid in the mosh pit at a concert. Culture shock! The boys love him so it was wonderful that he could make it. My sister and niece drove up from another suburb. Kathy thought it had been about 22 years since she was brave enough to venture into this pizza establishment. It might be 22 years until she returns.

There’s more fun scheduled for tomorrow. We’ll make it to church, Monkey Joe’s and Portillo’s before they need to head for home. We pack these days full and I love every minute of it. I do lack some of my normal energy level after they leave, but my brain overflows with good memories. Life is good.

So it was a wonderful weekend filled with grandsons galore. Other family members joined in the festivities to only heighten the good times. These are some of the people who mean so much to me and help me make it through when times get tougher. I have a support group that can’t be beat.

At first, Bob was going to skip THE mouse tonight. He was sore and tired and Lewy hovered nearby. Yet he realized that he couldn’t let Lewy take the day away from him. The whole wallowing for sympathy just doesn’t cut it when he could be spending time with his adorable grandsons. I think he ended up having as much fun as the boys.

So life is quite good here. I continue to value the people who are in my life and who will be here for the long haul. I love splurging on childhood memories. I can still hear the echoes of their laughter. Life is good.

God Uses My Blog to Prove that Life is Good

      Times for pity wallowing are reduced when confronted head on.