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.

An Excuse for Hot Chocolate

Lewy has been with us most of the day. My poor husband decided not to go to the Northwestern football game. He couldn’t take cold weather combined with a case of Lewy. It was a good thing for this decision because Lewy only got worse as the day progressed.

He sat in his Lewy trance for most of the day. I still cringe when I see this behavior, but I worry of that someday when I will not even notice? I just sat next to him for hours and tried to keep him from falling from the couch. The woman who cleans our house was surprised, no shocked, to see his condition. Even though many people have heard of Bob’s condition, it really takes seeing Lewy in action to understand the depth of Lewy’s hold on my Bob.

We went for a car ride just to get out and I must have asked him 3,000 times how he was doing. I felt like I had gone back in time to when I asked Stephanie if she was cold. Instead of this being the mother thing to say when winter strikes, it is the spouse thing to say when Lewy strikes. I suppose it is a prime example of demonstrating my love for my family.

I find that I want to be with him. At the start of Lewy, he really wanted me next to him. Even an aisle or two at Target was enough to send him into a frenzy. Now I am the panicked shopper. When we are home together, which is 95% of the time, I find myself needing to be in the same room as him. I often just stare at him as he combats his hallucinations, inwardly sobbing for this dreadful disease. It is slowly stealing my husband and there is nothing that I can do.

I’m blessed that we are able to be together. We are good for each other even after all of these years. There’s a certain comfort to huddle down on the couch with my hubby as we grasp big mugs of steaming hot chocolate. Ahhhh! Life is good!

God Uses My Blog to Remind Me that Life is Good:

         It gives me a good excuse to sip hot chocolate and forget about the calories that are being placed on my thighs. Life is good.

Happy Thanksgiving

We made the drive to my daughter’s and are anxiously waiting tomorrow, the day of gluttony and ease. She’ll have fifteen gathered around the table, all letting out their waistbands. One of the reasons that my daughter loves Thanksgiving so is that it is time to gather with friends and family and contemplate our many blessings. There is no panic if you have the right gift; instead you come together throughout a relaxing day stuffed with traditions.

We’ll stay here throughout Black Friday morning. Ever since Stephanie was behind the cash register during this unique holiday, she has wanted to experience the frenzy. In the past, she has gone out with my husband for a midnight run through one or two locations. The she wakes me while the skies are still dark to hit some of the biggest deals. Stephanie always studies the newspaper ads and determines the best route. The only requirement is that we need to purchase one gift for ourselves during this day of greed.

We have lots of memories of times we have captured deals and laughed our way through the crowds. My body no longer moves with the ease of a talented shopper, but I will do my best to keep up.

Stephanie and her family will head for a weekend with Chris’ family for the holiday weekend in the early afternoon. We’ll head back home and ease our bones after being loving grandparents and shoppers. Perhaps we might even try to make our home look more festive for the next major holiday.

So special Thanksgiving wishes to all of you who take time to read my musings. I’m blessed to have so many people care about our limited adventures and journeys into medical nightmares. God bless each of you. May your turkeys be moist and desserts be scrumptious. Let your life be good.

God Uses this Blog to Remind Me that Life is Good:

      I just need to slow my days and look around to find that I’m surrounded with God’s blessings.

Oh – Teddy guessed that it would take five minutes to cook the turkey. The oven will be set at one degree. I’m glad he is not the chef!

Magical Moments

We had a wonderful weekend, as close to perfection as possible. Stephanie, et al, came to town, so that always cheers me up. My aches and pains are cushioned with each little grin I receive from the grandsons. Teddy tells his own version of jokes that only grandmothers can love. Ollie just has to be Ollie. There’s such a natural joy when God places children in my presence. I love all their antics and giggles. Life is good.

Our niece got married this weekend; so much of our time was devoted to family near and far. The precious grandsons danced until 11 and could have kept on going, but the adults with them were ready for bed. There was a photo booth at the reception, which I have heard is the latest craze. It was more than that. You should see our pictures complete with hats, boas, and amazing hats. I got a chance to spend time with another niece who lives out of state and has grown up without me getting to know her. We did our best to make up for that and I am thrilled that we did. Life is good.

Bob and I also got to get our pictures taken with Stephanie, Christopher and the boys. The photographer was able to capture all of us with eyes open and smiles wide. I so much wanted to get some nice pictures. We have more than enough stuff, and I have definitely learned that life can change at a moment’s notice. With Lewy in the house, I needed a nice shot of just Bob and I also. Last year’s picture lacked - I’ll leave it at that. I am so ecstatic with the results and even ordered photo Christmas cards. Life is good.

We ended the weekend with time together in worship and then a trek into the city for the Barnum and Bailey circus. I don’t know who had the best time. Ollie loved all the animals: elephants, lions, dogs, horses, tigers, leopards, cats and more. Loud motorcycles kept our interest. Teddy told us afterwards that Stephanie and I could take the positions of those lithe ladies swinging in the sky. Take a moment and picture that. Life is good since I don’t do that for a profession.

I talked with my dental hygienist this afternoon about the new presence of Lewy in the house. I realized that in many ways, we are lucky to have this diagnosis. I have really grasped the ecstasy in each good minute. I’m not sure when Lewy will grab even more from my home, so I beg God for the best of each moment. This weekend was jam packed with those miracle minutes. Life is good!

God Uses My Blog to Remind Me that Life is Good:

          I diagnose my days to find all those miracle minutes packed in my life. Life is good.

Blub, Blub, Blub

I’m thankful for so many things in my life that blessings overflow from my heart. My challenge was to daily include something ordinary that helps make my life special.

So . . .

I’m thankful for all of our fish tanks. We have multiple aquariums whose lights eerily shine from our home at night. All five are salt-water tanks filled with all sorts of creatures and fish, each with their own personalities. We can point out ones that are bashful, friendly, arrogant and more. The sizes and colors amaze the viewers.

We got our first tank back in 2007, right before Bob’s infamous fall. I know that when he had to do his less-than-fun PT exercises, he did them in front of the tanks to help keep mind over matter. We have my tank up in our bedroom. When I need to stretch out with a migraine or bothersome back, the tanks help calm the jittery nerves.

We love to show them off. People are amazed at all of the living things within the tanks. Our neighbor kids frequently come knocking at the door, begging to feed the fish. Little Ollie would love to provide a feast, so we have to hide the containers before food is flooding the tanks.

Lewy comes with more frenzy when Bob is worried and anxious. Hopefully these tanks can help calm him, which surely beats lots of colorful pills that put all sort of chemicals inside him. We all need some serenity, but Bob requires it in a totally different manner.

So, thanks God for our tanks. They help bring the serenity that we so strive for. We see some of the amazing creatures that inhabit this planet. We can look all around us and say, Life is good.

God Uses My Blog to Remind Me that Life is Good

       You don’t need a snorkel and expensive plane tickets to see the wonders of the sea. Wow! Life is good.

A First

We went out to dinner last night at a local Italian restaurant that is one of our favorites. Joining us was Bob’s entire family, all in town for our niece’s wedding. We haven’t seen Bob’s sister’s family for quite some time. This was the first time in too long that all the siblings were together. What a wonderful time to celebrate.

Toward the end of dinner, Lewy came to visit bringing with plenty of animal hallucinations. Bob stiffened in fear. He soon became rigid and unresponsive. I am used to these behaviors by now and know just to quietly whisper in his ear. This had always worked in the past to calm him. Last night was different.

He slowly was able to talk and frantically said that “they” were coming to get him. His fear was genuine. Then he looked at me and asked, “Who are you?” That’s a first and a first that I have been dreading since getting this diagnosis. I told him that I was his wife, but that did little to calm his agitation. There was no recognition in his face. I kept on talking; thank God for my gift of gab. He slowly slid back to reality.

After this, he was very tired and with a headache. That’s what happens after Lewy barges into our lives.  Bob was in a big hurry to leave and we quickly gathered our things. We soon were home and settled on our couch while the rest of his family went to their own homes or hotels.

He didn’t know who I was. A cold dagger stabbed my heart but I continued on as if not wounded. Those few minutes marked another milestone on the Lewy highway. There is an emptiness that I feel. I surprisingly didn’t cry or lock myself into seclusion for I was well aware that his recognition of me would not be consistent. It is another good-bye that caregivers for Lewy patients all have to face, but today I still feel the echo in my soul. Another part of Bob has been chipped away. I see it drifting off and there is not one thing that I can do to rescue it. Life goes on.

Yet life is good. This morning, Bob knew my darling face and our lives kept on going. Our home is secure and our daughter still loves us. My marriage to Bob is strong in part due to our stalwart faith in God. We have many blessings. A few minutes in an Italian restaurant can’t take that away. Life is good. I will make it so.

God Uses This Blog to Prove to Me

      I am forced to examine my life and remember all the wonderful blessings that continually fill each day. Life is good!

A Few More Know

Yesterday, I was the speaker for our continuing education for Stephen Ministers.

The topic was Lewy Bodies Dementia, the disease that haunts my husband’s soul. I thought it appropriate since other members of our congregation also have different sorts of dementia and someday those care givers may want a Stephen Minister. I also wanted to expand the personal knowledge of the group. Additional awareness is needed throughout our nation. Finally, I wanted to explain Bob’s condition so others might better understand his Lewy behaviors.

I didn’t cry. I’m blessed with the tendency to blubber away whether happy or sad. Just toss me a box of tissues before I go to a movie or say good-bye to loved ones. I’ve always had this characteristic and have sobbed my way through life. I expected blubbering, but my body held out. The only other time I didn’t cry when I expected to do so was when I woke up my daughter to tell her my mother had died. I feel like I have come to accept LBD and am gathering knowledge to better fight the next chapter. We have a long way to go, but we will do it together.

My body has lacked any endurance. After I gave my talk, I was pretty much zonked for the day. Today we went to early church followed by a nice breakfast. Once again, I came home just looking for my pillow. I don’t know what is going on. Bob of all people feels that I need more sleep each night. (That’s kind of amusing coming from the guy who is playing on his computer to the wee morning hours.) Anyway, I can always benefit from beauty sleep, so I will be hitting the hay much earlier this week to see if that helps.

It’s a blustery day. The wind is blowing lawn chairs throughout the neighborhood. I think I just saw a neighbor’s dog blow by the window. It was in the 70’s today and should only get to the 30’s tomorrow. That’s plain nuts. When a front goes through or the wind is blowing, it starts my Mighty Three into action. That led me into taking a nasty fall in our family room, hitting my elbow. Our rug caught my empty head, so no major damage was done to anything besides my pride. I don’t like this wobbly feeling and I like even less when it strikes hard. My padding protects me and Bob helps bounce me to a vertical position. It’s just a normal day in our home.

That was our weekend. We’re a barrel of laughs over here, but we both know things could be much worse. The northeast is still drying out and trying to make new homes from the damage. We can’t complain. Life is good,

God Uses This Blog to Prove That Life is Good

       More people know about Lewy. We will keep spreading the news.

I Love My Bed

My fabulous daughter has gently unfolded to become a fabulous mother and wife. She has created a home and family unit bursting with Christian love and values. I applaud her actions. She has some Martha Stewart in her that did not come from me. Her color-coded organization just blows my mind. My organization style is more of a “just throw it on the family room table” style. We live in the home that people love to visit because it makes them feel better about their own limited housekeeping skills.

Anyway, for November, she made a construction paper tree that hangs on the pantry door. Each day, she asks her two preschoolers to look around them and tell her something for which they are thankful. Some of the more heart-warming answers include books, windows and bugs. She writes the word and they draw a picture.

This new tradition helps imprint the real definition of Thanksgiving on all who enter her home. It’s an activity that would benefit most of us and help center our minds on our many blessings. In the last post, I briefly wrote of two people who bring joy and thanksgiving to our home. Jill and Cyndi – you are the best!

I probably should write my thanks of all of my family members. I am blessed to have a loving daughter who visibly only shakes her head in disbelief at me on an infrequent basis. Her husband and children are fabulous and always willing to help. I love that family in a manner that only grandmas are able. I have to also note my husband who provides me with support and unconditional love. Life is good.

Instead of singling out people, I wanted to look at life from a different angle. The newest thanksgiving is the disappearance of all of those political advertisements from the mail, phone and television. Hallelujah! Those are done!

My focus on this blog will be to think of more precise thanks. I’m challenging myself to think of honest answers. For example, my thanks for today go to my bed. I love my bed. We have this huge California twin bed that has Temperpedic mattresses and remotes that allow adjustments of the head and foot. When my back is hurting, I can readjust my position multiple times throughout the night without getting out of bed. My head is up when my allergies make lousy bedfellows. This allows Bob to get a reprieve from those awful coughs that would otherwise be heard in Sacramento as soon I would be horizontal. I’m between flat and up when I read my books.

When I decipher my reasons, I notice that my bed gives me comfort and a reprieve from my aches and pains. It helps my back and head by creating unique shapes that support my frame. It also brings comfort to my soul. I can be transported away in my books and dreams. My fish tank in our room allows me to meditate and become fixated on my breathing. It truly allows me to be pampered. What a wonderful way to end each day. Life of Lewy and The Mighty Three (migraines, vertigo and tinnitus) can be better ignored if at least for a short time. Yes, life is good.

God Uses This Blog to Show Me that Life is Good

        I stop my frantic brain and examine my life. Checking for the small stuff brings smiles my way. Life is good.

Cookies for Breakfast

Because of the cold and drizzly weather, my body expressed its desire to stay comatose with the blankets pulled up to my chubby ears this morning. I was awake enough with the time change. It’s pretty much of a miracle for my eyes to be open and brain cranking any hour with just a single digit.

I came downstairs to find that Einstein had more energy than I. He was observing the fabulous nutrition skills of this household. Cyndi, one of Bob’s wonderful friends from back at workdays sent this great container of Mrs. Field’s cookies for his birthday. Now that is my kind of friend. We had left the treats on the family room coffee table after waiting up past my bedtime for election results. Our brains were on voting overload. Well needless to say, Einstein felt these goodies would make a perfect breakfast treat. Luckily, I arrived at the crime scene before he could scarf down more than one small package. If it had been any more, I would have needed to be on bereavement leave.

I worry about my body behaving through these next months. I love working with Jill and don’t want to let her down. I fear that I am dragging, but as soon as I see those smiling faces, I perk right up. God sent Jill my way. She’s great with the kids and really is working hard to include me in our activities. She’ll be stuck hearing about many of my own health concerns and worries about my husband. I’m excited about the forced friendship in which I have her cornered. What a blessing to be in a loving, Christian environment.

So, I use my little stimulator to zap me through my day. Pain pills are unfortunately used more than I prefer, but without them my days would be horrid. I’m not getting much done on many of these days, but at least I have an excuse. I wouldn’t be getting anything done anyways, but I’ll pretend that my home would be otherwise immaculate with culinary delights besides those Mrs. Field’s cookies.

The clock shows it’s time to be getting ready for some beauty sleep. The beauty is not improving so I assume that I just need more practice. That sounds logical to me. Maybe I should just take up all those cookies so I could have breakfast in bed. Those yummies could just make tomorrow morning start off right.

God Uses My Blog to Remind Me that Life is Good

       I can forget about my squeaky body and focus on wonderful friends like Jill and Cyndi. Boy, life is good.

No More Political Ads

Yeah! Elections are drawing to a close tonight. I told my husband that for his birthday today, I would get him no more political ads for a while. I think that is a pretty good deal. There are a lot of us who have been craving that day.

I don’t get this whole negative campaigning going on that has filled our mailboxes and airwaves for far too long. I don’t understand how it worsens each election even though everybody I know says they don’t like it. Why does the mud slinging continue by politicians if nobody likes it?

The weather is still in the 30’s and rainy. Cool and damp are not two of my favorite forecasts. It surely doesn’t help the moods. Am I the only one who would rather hop in bed all cozy with blankets and read a good book? OK, I wouldn’t exactly hop, perhaps flop and drop would be better verbs.

Bob’s birthday is strange this year. What will the following twelve months bring to him? How will we celebrate next year? I’m trying my best to get out of my funk. With all the chronic illnesses that have invaded our home, I was used to dealing with working to maintain and possibly even improve our health. I’m not used to dealing with trying to slow that downward slide.

I think that last sentence pretty much sums up my emotions lately for my funk has lingered far too long. I’ve past the acceptance stage and am working on the education process, but I’m caught here with the future ready to squish me as it goes by. (And squishing the size of me is a pretty big deal.) Please let me know all of your brilliant, failsafe techniques for kicking that ball right over that hill.

Today, I think a better ending for this blog is:

God Uses My Blog to Prove to Me that Life is Good

                I must live for the moment while I look around me and see my many blessings. Life is good.

A Morning - No, an Evening - Discussion

There are many directions that this blog could take today. After spending some quality time with the grandsons, daughter and son-in-law, I always have plenty of options for this blog to take. The one that hits me the strongest is the church service we attended to start our day.

Stephanie’s church is large and friendly with many features that reach out and welcome strangers. There is actually a team of people to assist in the parking lot. They cover everything from pointing to empty parking slots and holding open umbrellas over those people dropped off at the door. Those are really simple things but important for starting out with a great welcome.

I noticed in the bulletin plenty of interesting things coming up in the next few weeks. Listed were the Bible studies, two different weekends to ring bells for Salvation Army, making Advent jars for the family and more. I like that they have small key chains available that list the church and pastors’ phone numbers in case you are involved in a situation that needs a more direct path to God. If you have an emergency, you have the phone numbers right in hand – literally.

I was very touched by the way this church celebrates the Eucharist. People go up for intinction and then have the opportunity to head back to the seats, kneel for some talking time to God, or join the pastor and some prayer team members for a blessing and prayer. People go at their own rate without having any pressure to speed it up. Both Bob and I kneeled at different spots and had our own dialogues with Jesus. I had to admit that my cover as a devoted Christian was a little off kilter. I believe in Jesus, that hasn’t wavered a bit, but I sure base my calendar on what I want to do, where I want to go, and when I will get there. I pretend to be the big prayer expert when I don’t always base my life in that direction. I haven’t been consistently going to God asking his opinion on how I spend my day: I give a fast this is my plan and then I’m out the door. My best is the inclusion of “I hope you like it God!” I can’t even blame it on a need to rush for an early appointment for I have plenty of mornings when I crawl down the steps and plop open the computer.

I’ve taken communion for about 40 years now, but this particular opportunity touched my soul in a special way as it cradled my thoughts in honesty. I’m not preparing a major switch in my actions, but hopefully you might see a more tender side of my actions. We’ll see what God says tomorrow morning. (A more accurate statement would read what God says tonight about tomorrow, for God knows he sure didn’t mold a morning person here!) Life is good. That’s how the conversation will start.

God Uses This Blog to Prove that Life is Good

        Talk about a great church service might just encourage someone to attend a place of worship. Aaaah. Life is good.

Maybe I'll Just Sleep on the Couch

A busy Saturday draws to a close and finds me seated alone on my daughter’s couch. The little ones were put to bed, much later than normal, that’s what happens when grandma babysits. My husband returned home exhausted but happy from the Notre Dame game. Stephanie and Christopher have also called it a day ready to end 15 hours in constant motion.

My body held out for me even with some of the unique expectations placed on it today. I’m not so used to floor puzzles, multiple trips down to a basement, or being a tickle monster for two fantastic toddlers. I love the stuffed snowballs that we threw at each other, and I’m happily surprised that neighbors didn’t call the police. We did pretty well chasing each other in the hopes to zap one of us with a snowball. (I just ordered a set of the Snowball Fight kit from Amazon so watch out if you come over to visit.)

I got the young ‘uns some new clothes that can count for their birthday or Christmas. It’s silly to wait until then to give them the items since they can be wearing them now. Ollie’s new monster shoes have got to be the best purchase. I’ll try to have photos to show off the new goodies.

I’m tired, but it’s a pretty nice tired. It will probably take me 16 years to climb the stairs but it’s more tired and creaky bones other than sharp pains.  I’ll do my prayers in bed, which can take hours. If I do fall asleep while praying, I figure it’s nice having my last thoughts of the day be with God. I’m also hoping to finish my current book on Lewy Bodies Dementia.

Tomorrow will be church and then an early birthday celebration for Bob. We’ll probably leave late afternoon. It’s always hard to leave Stephanie, et al, but I know I will see them in just a couple of weeks for my niece’s wedding. It’s amazing how my grandsons even change in two weeks. I want them to grow nice and strong but does it really have to be at this alarming rate. The zipping calendar spins faster and faster.

So, I’m off to take Einstein out one last time before I hit the hay. I better start talking to God for I have many things for which to thank Him. Hey, I’ll start as I’m climbing the stairs since that takes me so long. Life is good.

God Uses This Blog to Prove that Life is Good:

            Even with a zipping calendar, I manage to enjoy lots of blessings every day.

Busted!

We arrived in Indiana for a weekend of fun with my daughter’s family. Stephanie will take Bob to a Notre Dame football game tomorrow as part of an early celebration of Bob’s birthday. Meanwhile, I will be in charge of the two grandsons since their dad is busy taking master’s classes. I wonder what mischief I can get into.

Bathtub time was a fabulous time tonight even though the boys and I got into a wee bit of trouble. It all started when Teddy “accidentally” sprayed me by squeezing a rubber ducky. Of course that meant that Ollie needed to get into the action. After I had wet pants, watch out grandsons, I can spray you right back. We might of gotten by with our escapades if our peals of laughter would have been reduced by a few millions decibels. Busted! Even so, it was lots of fun for us anyhow.

Stephanie, Bob and Ollie hit the stores to get Bob a Notre Dame sweatshirt leaving me home alone with Teddy giving us time for some educational programming. We watch Wipeout! I think you could have heard us howling with each new splash.

As I sat snuggling with both boys, I turned to my daughter with a complete sense of serenity. Despite our volume, these youngsters emitted so much love that it proved to be intrinsic medication for all my aches and pains. I’m very grateful to have them all close now which only heightens the relationships that I have with my boys. We have our special sayings and routines that have fantastic memories. They know their Nanny loves them. Oh, life is good.

God Uses This Blog to Prove that Life is Good:

            Time with grandchildren keep me feeling young enough that you almost can’t hear my creaking bones.

I'm Back

I haven’t taken the time or effort to maintain any interesting tidbits about “life” for quite some time now. Relatively few people have commented about this absence so I let the days drift by like a winter blizzard. I have dreamed of including “writer” to the diminishing list of my attributes and am not quite ready to erase that quality. My mood has spiraled down much to the chagrin of my family, and I need to pull up my “big girl panties” and try to grab life as it spins by me.

I don’t know the real purpose of these posts and perhaps that is just fine. I have to come to grips with not knowing the answer to Lewy, fibromyalgia or Jeopardy’s Daily Double. My need to know and find out the answers has plagued me for a long time for I was the dorky kid in school with braces and thick glasses who researched answers in our family encyclopedia. (There was life before the Internet when homes boasted of the age of their multiple volumes of the Encyclopedia Britannica.)

I’m finding that I need this opportunity to type away on the computer. I can combine a dash of comedy with an honest depiction of life on the home front. My efforts will describe how chronic illnesses collide with dementia. I’ll foible along and open our lives to the examination of others. I’m kind of a Paris Hilton of reality blogs except I’m older, fatter, and have a whole lot less money in my checking account.

I think I need this site in my efforts to grasp hold of some sanity and temporarily slow the coming attack of dementia. I can vent my feelings rather than allow emotions to bubble inside me. I am precariously balancing all this new information of Lewy while my body is pushed beyond comfort. I love my time with the little ones, but my body aches during the cold and rainy weather.

So, I’m back. You’ll never know the topic of these writings, as everything is fair game. I’ll jabber away as if you are also plopped on our family couch ready to hear about our escapades. At least it is a safe place to go as you escape any of this political boxing. That alone shows that life is good!

God Uses This Blog to Show that Life is Good

       I have this opportunity to release some of the tension that could easily reside in our walls.

Lewy Sneaks In

I wonder what happens in my home when I’m not here. I’m not referring to the antics of our pooch, for Einstein leaves clues of his misdeeds. I joke with my grandsons that their own dog has a party complete with paper hats and balloons. I know that Einstein is aging just like us and prefers to spend much of his time snoozing away on our family room couch.

In this instance, I was wondering how often Lewy comes to try to rule our roost. While I was talking with my sister on the phone, I could tell that my husband’s eyes were appearing glazed and his body frozen while seated on the couch. Lewy had snuck in while I lost my guarded stance. It had silently crept to my Bob and covered his body in a tight hold. I went to his side and quietly held him in my arms as I whispered encouragements and words of love. There I stood until this finally passed. I had promised to be with Bob to fight this dreaded disease, but I realize that Bob often must do this battle alone.

It scares me. I worry how frequently Lewy takes claim over Bob while I am not home. I worry that my sweetie must most certainly topple on the couch or slouch on his computer while alone. It breaks my heart. Guilt washes over me as I worry that my husband should have more support. How dare Lewy come and clutch Bob’s brain. What can I do to provide a constant team approach?

The new medicine has still tremendously helped Bob. Since starting this medication, the night terrors have been reduced to mere bad dreams when Bob is asleep late in the night. If he falls asleep during the day, those awful dreams still control his body. The hallucinations are reduced meaning animals no longer fill our living room. Despite these great results, our insurance still refuses to pay claiming limited proven success with these pills. We’ll continue to pay out of pocket, but it infuriates me that those in the insurance field make such major medical decisions without the training of our doctors. Oh well. At least, Bob has these pills to help him rid Lewy from his soul.

I wish I knew how to be the best wife for my darling throughout this Lewy Bodies Dementia struggle. I want to block its path into our home, marriage and lives. I still see him frozen today, leaning to the right as his eyes stare into Lewyland. I just want Lewy to leave.

We will fight this together and work to continue to scream that life is good.

God Uses Our Love to Prove that Life is Good

        Even when we are not physically together, our love keeps us bound together.

A Hard Morning with Lewy

Lewy came to church today. Bob didn’t say anything at the time but I know the frozen stare that comes with this strange disease. He glares off in the distance while his muscle tone tightens his frame. It didn’t last very long this time; the duration varies immensely, yet the threat of Lewy’s arrival complicates our actions.

We’ve been home for a bit by now, but I still see his frozen face etched into my mind. I can’t help wondering why God has brought this stage into our lives. Change that last line to why God has allowed Lewy to still reside in Bob’s soul. God has provided good doctors and loving friends but that isn’t enough. I want an exorcism of some kind to remove Lewy totally and completely.

Lewy is always with us. We can pretend to ignore its existence only to have Lewy pounce on our lives. Its threat has me always driving. That’s a small concession yet it is a major change in our routines. Like most families, the male usually takes the keys. I don’t mind the driving, but I shudder when I realize why I’m now in the driver’s seat. I watch him at the stove or when he ventures out with Einstein.

The hallucinations are getting larger and more frequent. The somewhat cute little fuzzies are being replaced with larger creatures with scarier faces. They fit right in the Halloween decorations, but I would pay anything to get them out of his head. It’s difficult to have a nice dinner when a monster struts closer, ready to pounce.

A lot of Lewy is why. I was never one to question God: I always felt a tinge of irreverence when doubting the Lord. A debilitating disease changes that worry. I now beg God to let my Bob come back full time versus periods of lucidity and confusion swirled together. It’s often me that wants to hover over my darling to protect him from the falls and wandering gait. I just don’t know how.

Bob is resting now. I know the doctors forbid daytime naps, but his body is so fatigued after being so tense throughout the morning. He’ll arise soon and place on his mask that things are normal. I’m proud of his efforts but silently sob with his need to be strong. Go away Lewy. Leave us alone! Life is so good, why are you trying to take that from us! Please help us God!

God Uses Our Love to Prove that Life is Good

           Lewy comes to visit, but I stand guard of my husband. He won’t fight this alone.