Dream Time

Yesterday, Bob received an invitation for another command performance up at Mayo for this Thursday. It came as a surprise to us; we had not expected to make this trip for another three months. Mayo wants to start that fight of Lewy Bodies Dementia (LBD) and so the drives begin.

They need both Bob and I for this appointment. At least I finally can feel needed. We will have a consultation first to discuss Bob’s sleeping patterns. Let me see if I can explain this to you. LBD attacks the way people take a snooze. Most people go into deep REM sleep for those super dreams about any hunks in their lives. Bodies become somewhat paralyzed so we don’t act out those dreams. Without that paralysis, our legs would be moving as we dream of chasing those good-looking honeys down the street. People who have LBD might have some of the similar dreams in REM sleep, but their bodies don’t act paralyzed. They act out those dreams. That means that if Bob were chasing some blonde in his dreams, his legs would be kicking me. (And I would be kicking him right back!) He would not awaken to an unfriendly wife, for the dream would continue and continue and continue turning more and more unhappy. The dreams always turn scary. Yet Bob would still keep dreaming, unable to wake from his horrors.

Mayo believes that if Bob’s sleep patterns can be altered, he will be able to get better rest. I need to report what I see each night as Bob attempts to rest. Once people with LBD  sleep better, they can think better, feel better and do better. Mayo wants to get that going. It will be a way to extend this earlier stage of LBD.

So we go for a consultation and then probably have a full sleep study on Bob for that evening. We are going to drive part of the way tomorrow and finish up on Thursday if needed. It is still very hard for me to travel for a long period in the car. I also can’t use my stimulator while driving. Plus, too many painkillers are probably not advised for the driver.

So our journey begins tomorrow. This trip will be repeated many times in the coming years. Bob and I will fight this goofy LBD. Our love will get us through.

God Uses Our Love to Prove that Life is Good

      -  Bob and I will fight this fight together. Life is good!

Olympic Sized Dreams

I’m really hooked on watching the Summer Olympics again this year. You can probably hear some of my enthusiastic screaming as I urge various Olympians on for the gold. I’m not sure how much they hear me for they don’t always follow my clear directions.

This weekend, when the grandsons were in town, Stephanie and I repositioned little bodies to replicate the men’s gymnastics on the pommel horse. That meant lifting legs, swinging tooshes and stretching arms as the little bodies somersaulted over the couch. Apparently we started something, for Teddy’s Momma reported that today when the kayaking began, he needed to rush and find a box (they still have one or two or one hundred since the moving van left a mere week ago) in order to replicate the arm movements when waves crashed against the boats. I love it!

One of my favorite parts of these Olympics is to watch the parents as their children perform. They bend and cringe and clap and even pray. They act out the very movements that their children need to make. They know the early mornings and long trips to countless competitions. They know the tears and the fears.

It’s equally hard to watch the faces of those whose dreams are burst. A simple hop or slower kick can change the score from medal to disaster.  Their young lives have been dedicated to these days in London. They have so much pressure as the whole world watches their every movement. They can’t escape the cameras. The amount of eyes glued to their actions must be overwhelming in itself.

Dreams are hard to see disintegrate before our eyes regardless of our age. We all have certain hopes and aspirations. We dream of driving the family car, getting our first job, and entering the right college. We pray for a good marriage, quiet in-laws, and a new home without signing all those papers 4,000 times. As we age, we dream for retirement. Sometimes that starts as young as 17. We want good health but often that is not a dream but a mere assumption. Chronic pain changes all of that. We can sit in our own family room and feel like our dreams are ripped from our hands. There is no coach to help from the sidelines. That’s where our faith comes in. I can still fold my hands despite my daily pain. My thoughts turn upward as I sit and watch my husband. I can’t let the pain get the gold medal. I need to fight that as if my life depended on it. Perhaps it does!

God Uses Our Love to Prove that Life is Good:

       -  Bob and I pray for each other as we fight our illnesses head on.

This is Love

It was wonderful having my daughter and her family come visit this weekend. A nephew on Christopher’s side turned six. They were finally close enough to join in a simple family celebration. They stayed in our home and brightened the walls that surround us.

They had to go to some of their personal favorites when we dined out. For Stephanie, that would be Portillo’s three meals per day. Christopher wanted a Lou’s pizza, but we couldn’t put that in a short 40-hour visit. Where would be your places to dine when you return to your past residences?

The kids kept me smiling and just plain laughing. Teddy is smart, silly and heart warming. Ollie is outgoing, determined and intelligent. Stephanie gave me a perfect example of the difference between the two boys. They had gone to a small beach at Christopher’s former base. The boys were told to not get their shirts wet until she joined them. The idea behind this standard was to stay where it was shallow until she could get out all the paraphernalia you take for a summer afternoon. Teddy went into the water and stopped when the water reached his hips. Ollie got that far and then lifted up his shirt and just kept going. Neither boy got their shirt wet; they just did it in their own way. We went to get the boys new Crocs along with those little Jibbitz that decorate the top. Teddy took his time, but picked out five within a reasonable time. He got some Superheroes with a couple of close ups of Scooby Doo. Ollie looked at the choices for about 47 hours before making his selection of various bugs and animals.. He studies and scrutinizes every detail. At church, the lesson was the feeding of the 5,000. Our pastor asked the kids at the children’s sermon to assist in the distribution of baskets of bread to share with all the members in the congregation. Teddy solemnly passed the basket from row to row. Ollie just kept on eating, helping himself to more bread as needed.

I was also able to view the exact match for the word love during their short visit. How perfect to glance to my side at the communion rail and see the five members of my family in reverent reflection. I followed Stephanie and Bob as they returned to their seats. Stephanie firmly grasped Bob’s arm and proudly went back to our pew. Her head was held high and her walk confident. Her look to her Poppy was tender and caring. This was the visual of love. I can’t pick out a stronger example. Their bond has always been strong and it’s not getting weaker. This is love. This is life. Life is good.

God Uses Our Love to Prove that Life is Good

       - A close family is the ideal definition of the word love. Life is good.

Our Love is Good Too

My attempts will be to daily write on this blog, more as a therapy for me as I use my love of writing.  You will be able to observe what happens with even the best of my convictions, as I admit that days will probably pass without an update from me. The focus of these writings is going to take a shift, as much will now include the new diagnosis for Bob.

The news did not catch me as a major surprise. I was the one who asked for a check on Bob’s cognitive level including his memory while Bob cared more about his pokey walking. We each got to ask the physicians one question, in fact the opening words from this doctor was “What do you want here?” That’s not quite the comforting bedside manner I would have preferred. After we caught our breath, we filled the staff in the personal notes of our Post Fall (PF) life.

I have somewhat refrained from total honesty that usually accompany my writings. I owed my fabulous husband a respite from my words. I have been paralyzed with not knowing the correct actions I should take. We just recently got the label of “brain injured” and that only after my urging. I’ve been criticized for including those two words when I have described Bob, but I knew the form in front of me was not the man I married. I still love him with my whole heart and feel totally blessed to wear this wedding ring for my partner in life. I have always promised that I would care for him at home if anything ever happened. He despises full care facilities, and I will do all that I can to live up to that promise. I am not one to ever back down from any promise and I don’t plan to alter that.

The future will bring forth some difficult times to face but some marvelous ones as well. Unlike Alzeiheimer’s slow theft of memories, Lewy Bodies Dementia (LBD) has days that are severe mixed with days that are pretty nice. Already, Bob has suffered from times when he knows no one but me. He can’t recognize his surroundings, not even sure if he is inside or out. My heart crumbles at these instances for the total fear that fills his eyes. I can’t imagine what he is undergoing just as he can’t understand my own feelings.

We already feel as if our existence is on some isle. We know some of the records of increased frequency of this devastating disease. Bob has a strong will to beat some of these horrid odds.  I remain unsure of many of the particulars for the two of us, but I know we will do it together. His confusion is still only in episodes coming several times throughout the day. That’s now good. I pray that comprehension won’t diminish quickly.

Some of the humor may leave this site as I try to be honest to others about our life. The jokes would be somewhat crass about my husband and his dignity deserves much more than that. I have not included in this blog some of our experiences that have made this diagnosis not be a surprise.

I feel his current difficulties prove our love to each other. Bob has always known who I am. His fear has been comforted by my presence. I don’t want to be anywhere except by his side. We belong together thus the new ending for my posts.

God Uses Our Love to Prove that Life is Good

       Our marriage is blessed to be together. Life is good.

The Sluggard

Well, I’ve managed to take the role of a sluggard today accomplishing basically nothing. The emotions of Bob and I have had momentary cracks when the latest news has slowly ebbed into our consciousness. Bob remembers one or two other friends that he would like me to contact. More and more people have sent emails or made calls to remind us of their love and support.

Stephanie et al came in this evening. It always brightens the spirit to have little feet rush down our halls. Those little arms give the best hugs ever. You can hear calls for Onnie and Oppie as excuses for bedtimes become apparent. A little spoiling never hurts. That’s the joy of being a grandma.

That handsome son-in-law came into town still dressed for school. He cuts a mighty fine fellow in all of his Notre Dame garb. I smile at visions of him teaching in one of the most highly recognized universities in the country.  What a perfectly sculpted family they make.

Although the news was far from a surprise, it surely has taken some of the wind from my sails. Will our lives go back to normal? Would we notice normal if it walked by? Would normal recognize us? I’m not too sure. What will our family room look like in another seven years?

Who do you like to surround you when you get some news? Do you like to surround yourself with loved ones or keep the news tucked quietly in your heart? We have other friends struck by dementia who have chose to keep their secret to themselves. I don’t know if that is by fear of this dreaded disease, the shame of having an illness, or the misconception that it might disappear if only kept hidden away. When do you decide to unlock some of the secrecy stored in your soul? What secrets do you have tucked away? To whom do you share?

Bob and I tend to let everything out. We could hardly be a reality TV family, but we are open in our travails and mountaintops. Everyone is different. Each family must remain strong in their beliefs no matter what should happen.

So life goes on. I’ll fill you in on my treasures tomorrow.

We Got Our Label

Bob and I just returned from Rochester, Minnesota where the clinic staff at Mayo took a long look at my husband. Some of you may not be aware of some of the big concerns we have regarding Bob’s health. So, we went to go get some answers – and they gave us some.

During the last few days, I have written particular about some of Bob’s activities. If you had to explain it in just one word, you could say thorough. This is what we wanted. Bob especially needed a label. I wanted help with some of Bob’s episodes of forgetfulness. They gave us what we wanted.

We went back today and we finally got some news. Bob has Dementia with Lewy Bodies (DLB). You probably know as little about this syndrome as we did before we walked through the doctor’s door. The condition is a result of his February 2008 fall; there is scar tissue on his brain. This is a common dementia that is progressive. Bob will also begin some medications that will hide some of the symptoms and make Bob more comfortable.

We go back to Mayo in three months, this time for Bob to get another in-depth sleep study. Bob’s nutty sleep patterns are symptoms of DLB. This includes his crazy schedule and lack of deep sleep. (It doesn’t come close to hinting about how cute he is though.) We go back to Mayo six months from today for further psychological studies. They will then be able to provide us with a longer prognosis.

I know a lot of you will be checking out DLB on your computers. That’s great! I will be doing some of that too. Mayo will continue to provide us with additional  information as we flip calendar pages. Each person proceeds somewhat differently. Please honor our privacy though by limiting advice from your Great Aunt Bernice’s neighbor. Even so, call us up and invite us out for pizza. We would love to see our friends. This is a time God has told us to trust in Mayo. We are honestly still in some shock about the news. As we find out additional information, we will let you know.

I do know that Bob and I are incapable of driving up to Rochester by ourselves. It just isn’t safe! Stephanie has already offered her services. We can also fly up and perhaps rely on public transportation when we are there. Some good news is that we are quite pleased with our hotel that is only two blocks from Mayo. We might need some eyes watching over our home and pooch or even “taxi” drives to the airport.

You can please keep those prayers going. That need will only increase over the next few years. I think you all know our deep belief in the power of prayer. Those voices to God would be wonderful.

We will keep you up to date as we learn more things about DLB. We are blessed with some of the world’s best doctors and a God who is watching us full time. Life is good.

God Uses My Chronic Pain to Prove that Life is Good

     -  Throughout our multiple medical difficulties these past few years, our marriage has only gotten stronger. For that, thanks so much God. Life is good.

Tom Thumb Doughnuts

Once again, Bob was going from appointment to appointment today as the team of physicians tried to ascertain more about his specific difficulties. We started the morning out at the Pain Center, the same locale where I stayed for close to a month. People weren’t jumping up and down to see me, but I had a similar lack of reaction. The recommendation was for Bob to come up to Rochester and stay for the same program I endured. There are quite a few errors in that statement. Bob would have trouble staying alone for that length of time. Also, his current use of medications would be difficult to remove in a cold turkey fashion. (Where did that silly statement come from? Why not hot turkey with mashed potatoes? Wikipedia gave unusual possibilities - shocker!) That program has limited success for a person with a brain injury. Oh, yeah – Bob has some new initials. He now is considered BI. I think that is neat since his casual monogram is BI. Cute?

Bob then spent hours with a psychologist being tested for IQ, memory issues and knowledge of various trivia. The exams took a little over four hours. They were pretty thorough. Bob took most of these evaluations about a year ago, so this will provide them an opportunity to compare these figures with the baseline. The best thing about the afternoon was they told Bob to bring a snack. Anything involving food can’t be that bad.

I sat and waited for him to complete the evaluations. Explain to me why I got so darn tired. I was not alone, for I saw many heads bobbing away as bodies tried to fight off the fatigue caused by some unknown sleeping potion in the ventilation. We weren’t doing anything tough. I saw some Sudoku, e-readers and knitting, all activities picked by the person involved. There was a little small talk in the warm, stuffy room. People felt some kind of bond being there together. Forget the new friendships or scheduled distractions. Instead, it was zzzzzzzzzz!

We decided to go out to the county fair and check out the food. Once again, you could get fried anything! I could feel my arteries constricting away. I am a new fan of Tom Thumb doughnuts. We couldn’t find elephant ears, but these made fabulous substitutes. Bob and I probably shouldn’t have gone, for our footsteps significantly slowed by the end of the first row of yummies. The car somehow seemed much farther away. I’m sure some comedian came and reparked it at a further distance.

We’re tired. Bob has been poked and prodded more than he ever desired. I wonder how many times he has been asked to recite his birthday to supposedly verify his identity. The waiting for suggestions from the nine gazillion test results will be tough. We learned that this distance is way too far for the two of us to drive. Do you think Einstein could take over behind the wheel?

We’re praying that some clue to Bob’s conditions can be found and rectified. We know there is a return trip for a command performance in the middle of August. He’s just so cute that people want to see more of him. That means to keep the prayers coming. We have been very blessed so far.

God Uses My Chronic Pain to Prove that Life is Good

            Anything involving new foods like Tom Thumb doughnuts cannot be bad!