Lewy Body Dementia: One Day at a Time

Our story unfolds

Traveling with Lewy Body Dimentia

So what is it like to travel with someone with Lewy  Body Dementia, you may ask? Well after recently traveling with my husband who suffers this unpredictable disease, from Boston to Houston, via United Airlines, I feel fairly equipped to answer that question. Let me give you a snapshot of day 1 (I promise, only one day here!): Limo pick-up perfect! But then again, our driver is a close friend who often accompanies us to and from our Mass General Hospital appointments, who just happens to drive limo for the same company Art did prior to his diagnosis. Walter, ever the early bird, arrived (as expected) 15 minutes earlier than our requested time. Let’s check that time….5:15 a.m. The other former limo driver in our family was waiting outside smoking a cigar when Walter arrived. Yes, my love still smokes those nasty things, and as much as I detest it, I will not deny him this simple pleasure when so much else is out of his control. Onward to the airport with the sun rising before us…

Once at the airport a wheelchair was procured by our favorite limo driver. I wondered if anyone else around us thought it weird that our limo driver retrieved our luggage and then gave us each a hearty goodbye hug. (Who is that limo company again? Their drivers sure are friendly! ) Once inside, the airport personnel jumped into action pretty quickly, and we had our efficient escort in no time at all, which proved beneficial all the way around. We breezed through baggage check and security (Art never having to leave the wheelchair)-the first time ever his C-PAP machine glided seemingly unnoticed through the  x-ray machine! This escort was truly amazing-we never had to so much as hit a counter or machine-he did it all for us! All I had to do was just stand and watch over my guy in the wheelchair! With all the usual hurdles passed, he gently rolled Art right into a nifty spot directly beside the desk at our departure gate. No questions asked. We were there, we had arrived with minimal effort on my part and topnotch efficiency on this gentleman’s part. Makes it all seem pretty seamless and easy, right? Well, maybe for one of us…

You see, the unexpected tends to make the Lewy Body sufferer incredibly nervous, and anxiety plays a huge part of bringing on an attack. That morning, Art suffered one of the worst attacks he had ever experienced. While he knew where he was, he was often confused as to what our escort was doing, asked more than a few times, “Why are we here?” and “What’s happening?” all the while his body was writhing with unforgiving jerks, making him feel like all eyes were glaring at him, judging him.  He struggled to speak, but once he managed to get the words out they crushed me to the core. “They must think I am a drunk with the  D.T.’s.” With those heart wrenching words expressed, he cupped his hands around his eyes, so he couldn’t see what he felt must certainly be throngs of gawkers, unmercifully staring at him.

Thankfully we were allowed to be the very first to board the plane. That in itself was an experience, as the wheelchair goes to the plane, not on the plane. There is little room in the isle for it, and thus, Art had to take the long, rather halting, tough walk down the narrow aisle to the back of the plane, where our seats awaited us. What a blessed relief they were! We learned sitting in a window seat works best for him, as he continued throughout the four hour flight to suffer the severe jerks and tremors that had horrendously invaded his body. He could lean on the window/plane to help control his severe movements, which tends to help slow things down for him. Putting my arm on his shoulder, even better around him, helps as well. As he put it, “I feel like I am not going through this alone when you have your hands around me.” And so I do. Being in the window seat meant the person feeling the full effects of his tremors would be me, and not the person on the opposite side of me. Also, he feared his uncontrollable body  movements would have been knocking into the stewardesses and others in the aisle as they made their way past us. Thanks to our physical therapist and occupational therapist friends-we  listened and did this right! Inner seating a must!

Deplaning means waiting to be the last people off the plane. The wheelchair was a welcome sight as we maneuvered our way around with our new, eager to please young escort. This was day two on the job for him, and he was still learning where everything is. We eventually made it to our fairly cleared out luggage carousel, again last….but hey, our one piece of luggage was on it, so score!! I was especially happy to see my brother-in-law Barry walking towards us as soon as I had snatched up our suitcase! Yes, you read that right-one suitcase for an entire week. Also, one carry on. That’s it!! Being seasoned, veteran fliers we have learned to economize our luggage over the years. That in itself was a blessing this time around! Not having too much to schlep around was heavenly! We were afforded door-to-door service using the wheelchair-from the door of the plane, to the door of Art’s brother Bob’s pick-up truck. I can’t say enough about the support and assistance United Airlines provided, as well as the two international airports we traveled through.Things I have learned as a result of this flight: most people are glued to their technology in this day and age, and barely even notice you. Additionally, people are in general kind and helpful, regardless of what you may have heard before! Oh yes, and lastly, when the person on the aisle seat next to you asks questions, and you (me) share a bit of your (mine) faith them, they just may surprise you and share a strong faith in God as well. So Hannah, our lovely, curious,  twenty something young seat mate, who is headed off to Antioch College in the fall to begin her studies on the brain, thank you for telling me that sitting next to  us was “A blessing.” I can assure you, it was indeed a blessing sitting next to you.



What happens when the caregiver needs to be cared for…it opens the eyes.

This past week the tables were turned, and I became the physically challenged one in need of constant assistance: I had thrown my back out and no matter what I tried to do, I was in excruciating pain. I went from constant caregiver, to needing constant  care myself! I was given the opportunity to see and experience life from the other point of view…not so fun, I have to admit. I am normally an on-the-go lady, rarely stopping to sit still, so not being capable of  even engaging in the smallest of tasks that I am used to and quite frankly, always have taken for granted, left me at times embarrassed, frustrated, exhausted, and more importantly- with a new-found awareness and appreciation of what my husband must go through nearly everyday of his life.

I am thankful he had some “good days” during my time of incapacitation. He was the one who waited on me for a switch! Getting up from a sitting position was a crushingly painful ordeal, so I was brought my drinks, lunch, snacks (only when he was getting some for himself-I wasn’t a total pain in the neck!). While I admit it was nice to be waited on at first, honestly this got old pretty quickly when all I simply wanted to do was to stand and walk to the counter unaided-something he often needs assistance with as well. He had to pull me up to a standing position, and see if I could indeed walk unescorted. While he is never completely able to walk without a cane or my arm, he quipped that we were “the lame leading the lame.” Indeed, we were quite a sight. Going to the bathroom…let’s not even go down that road!!

All of this was indeed quite frustrating for me, especially when I had committed to watching my energetic, non-stop, fearless ten month old grandson. We quickly realized with both of our glaring limitations, this was going to be nearly impossible. So I was faced with a harsh choice that I tell him we need to make sometimes…ask a friend to help. This is a tough thing for a man to  accept, and when it is me asking for help with him, well it is not such a big deal to me. I assure him it is okay, and he always dissents, but I win out each time because ultimately, it is me that is in need of assistance for him. Male friends drive him to coffee with the guys on some Thursdays. I have no problem with this. This was an obstacle he had to deal with and overcome, seeing as he no longer drives. He absolutely loathes having to ask for help from others. Now the shoe was on the other foot, and he was telling me he could not (and I know this) offer much relief concerning the care of this incredibly active baby, and since I could not pick my 22 pound grandson up, or chase him around, I needed to accept help for my own impediments. Wow. Turnabout is fair play, but boy is this a load of garbage to deal with.

So twice this week I had committed to taking care of my adorably “busy” young grandson, and twice I had to suck it up and call others for help. Accepting that I could not do what I love to do most in life, playing with my grandson and caring for his every little need, was a total blow to my female nurturing ego. As a loving grandmother, I pride myself on  the natural return to those basic maternal instincts as when I was raising his father. They all flood back automatically-and I cherish these times when I am building up the bond between my grandson(s) and myself. But I was smacked upside the head with the stark and bitter reality that I (we) could not do this alone. Yes, I bit the almighty nasty tasting bullet and sought some much-needed outside support, but not before contemplating how dismal I felt and how grieved it must make my beloved husband feel each time we make that similar call for him. This week I took a small step forward in understanding what he  goes through at times, and for that I am grateful. I do not claim to be able to alleviate this stressor, but at least I can better understand it and sympathize.

The days ahead will be met with more pressing needs as we deal with the burdensome demands of the unyielding effects Lewy Body on my husband.Yes, I am sure there will be more times when we can not deal with everything life throws at us alone.  I am thankful for trusted friends and family who are always there for us. To my ever loyal, caring friend Leslie, and my sweet, reliable teenaged friend Rachel, a HUGE thank you for answering my desperate pleas of need this week!

Blessings to you all!



Our Changing Lives…

Burns Night

For quite sometime I have been toying with the idea of writing a blog. My son and daughter-in-law have their own website for blogging, and my other daughter-in-law writes for the well read Boston Mom’s Blog, so the inspiration is great to add my name to this ever growing list of bloggers in my family! The reason I have chosen now to begin this blog is indeed our ever changing lives.  Life does not stand still, it marches on, whether we are ready for the changes of not. Sometimes we welcome life’s changes, sometimes not so much. Change can be good, as witnessed by the addition of my two daughter’s-in-law into our family; and with the blessed births of my two grandsons. Our family has been added to, but so has our family been diminished-having lost both my parents over the years has not been easy, but we remember each with loving stories through much laughter and occasional tears.

Once again our family is facing challenging changes ahead-this past winter my beloved husband of 38 years was diagnosed with a degenerative, debilitating disease known as Lewy Bodies with Dementia, or simply Lewy Body, as it is commonly referred to. This little known, rather unfamiliar disease was brought to light a few years back when  popular and much loved iconic comedian Robin Williams was found to have it. After suffering its devastating effects Williams took his own life. Williams was misdiagnosed as having Parkinson’s Disease, and indeed this disease falls under the Parkinsonian umbrella, but it is so much more than Parkinson’s Disease. Lewy Body has a dementia component that is often misdiagnosed as Alzheimer’s Disease in conjunction with Parkinson’s. Unfortunately one of the tougher elements of Lewy  Body is the fact that the same medications that work well for Parkinson’s patients does nothing for Lewy Body sufferers. Likewise with Alzheimer’s medications; incomprehensibly, they are ineffective with fighting off the heart wrenching attacks of dementia for those with Lewy Body. There are no known medications that work well in fighting off this crushing disease. Thus, my husband has agreed to be a participant in a brain disorder study at the world renowned Massachusetts General Hospital in Boston, in order to help future generations deal with this life shortening, horrific disease. Score one for research.

I will share my journey as a wife, partner, emotional supporter, and daily caregiver, to my husband as we forage the murky waters that the unknown world of Lewy  Bodies with Dementia has in store for us. Lest you think this blog will be all gloom and doom think again, as I am a positive person of strong Christian faith, and will share the ups as well as the downs. The intensely positive aspect of our life is the continued strength, love, and commitment my husband and myself are blessed with each new day by those around us-our children and their spouses, and especially the innocence and ceaseless love of our  young grandsons, and our many caring friends, who truly exemplify the epitome of “Let me know what I can do to help,” as help they do.

Now a word about the name…modernmimi2 is reference to the name my three year old grandson gave me when he was old enough to talk; and I thought I was going to be called “Grammie”! I should have know better…kids will call their  grandparents what they will. I am ok with Mimi. In fact, I have rather has grown accustomed to it, and when my grandson could say Grammie, we  decided together one day as he struggled with calling me by that very title, that Mimi fit me best. So Mimi it is, and fyi, grandpa is actually “Papa”. He loves it too. Modern? Current times….2? Why two grandkids, of course. So thank you for letting me share a bit of my story and this life changing journey with you. Till the next time, this is Modernmimi2 wishing you life’s simple pleasures with grace and dignity.


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