Saturday, October 3, 2009
Note to reader, the truth is:
• Yes, I had a very uncomfortable brain MRI almost a year before my AD diagnosis
• Yes, I did get a horrible itch
• Yes, I did consider the history of itches as a distraction
• And heck, yeah I was determined not to have to take this MRI over again; ergo: the following really short, short-story which I outlined in my head during my merry-go-ride in the MRI
The Nightmare Itch in the MRI – Whoooahhaahaah ( Sept. 16, 2008)
This is a synopsis of my Brain-MRI experience today - - - (and yes contrary to popular belief, they did find a brain!)
The Brain MRI went good today until the last 10-15 minutes - - -
This is because I got the worst itch ever on the upper lip of my face! And this itch; which as the minutes ticked on actually felt more like it could potentially be a brain-sucking, bug-crawling monster insect creeping on my face closer and closer to my innocent yet very open inviting nostrils. Eeeek!! All this occurring while I alone lay there helplessly locked up in my MRI- ice hockey-mask-restraint. I couldn't move, scratch or swat it!!!
Helpless and alone, I decided to analyze itches as a distraction; and as my unselfish gift to mankind. So, I asked myself: "do itches go away quickly simply because we usually scratch them right away? - - Or, do they go away on their own!!??" I knew at once I had a choice, or more likely a calling. I could ignore this challenge before me or I could give the world of science an act of true selflessness; and break thru this unknown ground once and for all. This so, everyone everywhere would discover for themselves if itches truly do last forever when left unscratched!!! Whoooahhaahaah!
As I lay helplessly there in my former ice-hockey-mask now turned Hannibal Lecter’s mask-restraint, the mad angst of evil located in my carnal nature began to take over completely. I writhed in agony and wanted to scream and rip my restraints and strike out at all those who placed me in this tube of torture!
After combining several unsuccessful Swedish “humming while blowing” air techniques, the science experiment continued despairingly. But, just as I started to lose all hope, patience and what little was left of my mind that this monster MRI was supposed to be analyzing; I took one last stab at it and tried all sorts of facial contortions to release the itch. But alas, it too was of no avail. I even grew my tongue an inch and a half longer trying in vain to lick my upper lip and nostrils ( yuck!!)
And then behold a miracle!!!! It happened!!! The itch did indeed depart; and yes this was all on it's very own accord!!! Yahoo !!
Indeed, this was an anti-climatic ending; but when you consider the alternative, of not knowing the truth - - - you too can revel in the fact that America is now a much more safer and wiser place for future MRI inhabitants! And if I put some smiles on faces today, mine included well then: mission accomplished!
Many thanks out to everyone for all your prayers!
Don’t forget to breathe deeply, laugh loudly, & love God with all your heart!
Monday, September 7, 2009
Sitting in Barnes and Nobles bookstore today I was gleaning helpful info from various books on Alzheimer’s with Tim beside me enjoying a good magazine. I knew I had a strong need to tell Tim about a prayer I prayed for him the night before. But the thought of verbalizing this out loud while looking into his face triggered all this love swelling up inside me with strong emotions taking over my throat and heart. All of which brought crocodile tears streaming down my cheeks with my nose now redder than Rudolf’s; despite all the watchful book-readers’ eyes circling around me in the store’s cafe area. I knew it was now or never to tell him before I might forget what I wanted to say. And with AD and short term memory in deficit, there isn’t always time to put off things. Besides, never is not an acceptable choice in my vocabulary.
You see plainly stated, it’s much easier for me to have the degree of faith to believe in miracles for the future; which you can’t see than it is for Tim. In no way am I saying I’m a better Christian. In some ways he's the much better and more fruitful in his life. It’s simply just easier for me because of going thru trials for 35 years with Christ and seeing God miraculously bring me through again and again. Mixing that with a lifetime of answered prayers; can’t help but bring one lots of “hope for the future”. And hope of course, grows strong faith for the unknown problems ahead that life will bring. Another reason for Tim’s struggle to easily believe in miracles I believe was because Tim was blessed with a more "Leave it to Beaver" childhood and life than I, prior to his inviting Christ into his heart some 16 years ago. Faith was harder for him at first, but then after salvation, followed those life's unavoidable trials; which grew faith in him, as well will this trial we are walking thru now.
Well, getting back to my public blubbering big tears next to Tim in the middle of the bookstore café. Tim leaned over to me and whispered his inevitable, humble question that I love him for that simply asks: "Did I do something wrong? ” Which of course, he didn't. I couldn’t stop the sobbing, but still strongly needed to tell Tim, so I asked him to get me a stack of napkins. When Tim came back I explained I was going to have to write a note to him down on a café napkin as I lost my note pad and writing was the only alternative way to verbalize this without disturbing all the cafe readers around us. So, I became oblivious to my audience, grabbed the pile of napkins to cry into and one to write upon and started writing.
Ergo: "Love on a Napkin"
I am still forever, believing Rock solid in Christ for a healing (a result of this unshakable peace and joy Jesus gave me from the moment I was given the AD diagnosis by the doctor; which is miraculous in it's self and impossible on my own accord.). I know you have many concerns for the future; which we know at present is like “looking darkly into a mirror” on this side of heaven. So as a backup battle plan for your wonderful sake, I prayed for you yesterday (and am confirming the prayer in writing on this napkin) that should I slip into a higher AD level temporarily before I am totally healed on this side of heaven; I asked my Abba Father (the literal meaning that I love is: “my Daddy God”) to never allow me to say anything AD-related that would be extremely inappropriate-ugly or hurtful, or painful to you; which you would never deserve in a million years.
I prayed also for God to equip you with His wisdom, protection and all the resources needed; but especially for you to remember the power in His Word and rely on His strength only (which comes from His Word, praying and holding onto His joy; which is still possible in the midst of the worst storm). I also prayed for God’s presence to always be with you, constantly showering you with His peace and joy from now till we both go home to heaven. And I pray now additionally for good faithful true friends and family to surround, love and help you always.
Yours is the first and only face I love to see each morning and night, even when we tick each other off :=) And if you remember it was your phone number on a napkin 17 years ago and Providence Who started all this love between us.
Let us remember always that Christ is the Creator of all love and miracles firsthand. And His Hand we have seen work in us and around us many times. This wonderful God Is the only Perfect Love there is. I know this because as much as we love each other, if Christ was absent from the center of this marriage, it would be so flawed and we both know we wouldn’t be together today. This Creator of love (Who is love) we both know is always true to His Word, “ready, able and desiring to answer” and we know this is true having both experienced and witnessed many answers together.
Let us continue to believe together that Jesus Christ is still able to perform what He has promised: a miracle in our lives in answer to love on a napkin that is engulfed with believing prayers of ours and many others known and unknown praying for us full of faith in Him.
Wednesday, August 26, 2009
I may presently have early onset Alzheimer’s; but I’m still a Christian who knows miracles still happen
I went to my first Alzheimer’s Association support group last Thursday 8/20/09 with my husband (who is wonderful, by the way). I was the only non-caretaker in the group because my PET scan says I presently am a patient and have early onset Alzheimer’s disease.
At this support group there were some very fine, wonderful good people. Three shared how they were very evidently overwhelmed by the burden of caretaker for a loved one in much latter stages of AD than I am diagnosed presently in.
There was an open forum in this group where people talked at will, or vented at random, or when the facilitator asked them a question directly. I had so many questions in my head to ask that I’d not written down and was concerned I would forget them cause short term memory has not been my forte lately. One of my questions (“what amount of expenses will accrue when later stages of Alzheimer’s disease requires nursing home or hospice care?”) was answered without my asking with a staggering reply of “an estimated ~ $6,000 a month.”
My raised hand never was picked to speak, because I was trying to politely squeeze in between the talkative others, when finally something unexpected happened. One of the most talkative caretakers jumped over my shyly raised forearm and limply bent pointer finger and stared straight into my eyes asking “And how are you handing all of this?” (This person was referencing my recent diagnosis of early onset (age 56) Alzheimer’s on 6/10/2009). For a few seconds I hesitated because I wasn’t sure it would be “allowed” for me to speak my mind freely. I felt this way due to all the unofficial politically correct indoctrination our culture has imbedded into itself that seems to send this coded message out that one can reference other faiths except the Christian faith.
Well, my short-term brain went blank at this point, so I disregarded what were the right words to say; and I just decided to answer what my heart knew was true. And the truth was my own life’s experiences of seeing firsthand, God’s miraculous intervention time and time again in my life.
So I just plainly answered the question to the group saying: “Well, you have to understand, I have been a Christian for 35 years. And although I have gone thru so many hard times like everyone does over the years; I personally have seen miracle after miracle where God has brought me through each hardship unscathed. And my seeing God answer my prayers over and over again throughout all these years with bona fide miracles to boot; has filled my heart with so much faith, hope for the future, peace and even a joy in the midst of facing really hard times - - - that today I am not afraid of my future!! I can face tomorrow with so much optimism and hope because I know God hold’s that future in His safe hands and He will take care of me one day at a time, just like He always does”
Thank you dear readers and friends for all your prayers for me, I can really feel them.
And don’t forget, breathe deeply, laugh loudly, and trust God with your whole heart!
Tuesday, August 18, 2009
I have Alzheimer’s and I refuse to stop laughing!
I wrote the above caption with all respect and love to anyone whose life has been impacted in any form, by Alzheimer’s. The caption is because I see humor in everything, even in the bad stuff, and praise God I just can’t stop it!! Humor is my nuclear secret weapon against the blues! But my intent today is to focus on you. Just perhaps to put a smile on your face at the very least. So everyone lets remember to breathe deeply today and laugh loudly at every opportunity! The following true short story happened almost a year ago.
9/17/08 - Just Another "Cognitive Hiccup Kind of Day" :
Today I decided to walk my dog Molly to get the mail as well as; get a walk at the time we usually do, in our usual manner. So, I took all the usual items mentally checking them off one by one: house keys-check, dog leash-check, the plastic bag for potty-check, and the mailbox key as one would expect- double check.
While gathering all the items, Molly was jumping all over the couch doing that doggie "I'm so happy to go out" dance. I thought to myself why can’t we learn more from doggies; when Molly interrupted my thoughts with a large poke in my leg.
So off we went and as we set out, I commented to Molly that the sun seemed extremely hot for the time of day and I regretted not wearing my huge "old lady" straw hat. But I wasn't going to worry today about a few more liver spots or let a forgotten hat ruin our walk.
So as I looked up happily at the pretty big fluffy clouds; and the warm beautiful blue sky - - - even if today's Mesa Arizona sky was an: ozone-thinning; hot & dry-as-an-oven; lifeless; skin-aging; melanoma-threatening; leaving-huge-lines-on-your-cheeks, kind of day! - - - I decided to ignore the negative, trod on, and enjoy our walk the same! And then, in a blink we quickly arrived at the community mailbox!
Happily there, we struggled only for a shorter time today to open the box (lately the lock has been trouble) and no bills were inside!!! And I made sure to comment on this also to Molly as her paws don’t appreciate standing at the box longer than necessary.
But then, as I looked down I did a double take; noticing there was the usual leash loop sensibly tightly secured in the usual place on my left wrist. But to my horror the remainder length of the leash was dangling SOLO in the breeze. And no animal attached!! Fearing the worst, I did a quick eyeball once-over on the block. My heart raced and I feared the worst like any parent would do.
But then quickly I “put 2 and 2 together” as I realized I had just paraded down the entire street road with an unoccupied five-foot-long leash dragging behind me. All fluttering down the road's ground air behind me!! And no Molly the dog was in sight! (This is because she was left back at home; crying behind the locked front door!). As I stood at the mailbox taking all this in and wiping my laughing tears (a gift from Jesus that wouldn't stop & sent in perfect timing) my belly shook harder than Santa, as I thought about this ridiculous scene and the embarrassment of it all!
All along the walk home, I couldn't stop laughing even more, as I watched my imagination's hallucination of all the "window fingers" along the Des Moines Street road, surely parting their curtains aside for all of their strained eyes as I passed by again! What a wonderful gift from God is this funny sitcom journey we call life. Thank the Lord I didn't wear my huge "old lady" straw hat, because it surely would have exasperated this "Mad Woman of Des Moines Street" look of mine contrasting to our block's normal neighborly setting.
But the best part of all - - - - When I got back home, Molly gave me this huge "you're really scaring me, Mom!!" look and of course more laughter for me; and apology hugs for Molly! Hope this true dog-less dog walk story brought a smile to your day as it did mine!!
Note to readers:
I wrote this short true story, which was one of my many Alzheimer’s “the elephant is standing in the room” moments in the past few years. Before hindsight, I never even considered Alzheimer’s a possibility because I incorrectly thought I was too “young” age (56) and that I was being told it was something else health related by health professionals.
If you or someone you love is having cognitive events more than just a “senior moment” or brain fart, please go get a check up.
Sunday, August 16, 2009
Alzheimer’s Diary Note: from Friday 6/12/2009
The bad part of waking today:
I woke up crying this morning at 4:30 AM with a cluster headache with naseau (as my brother Brian calls it; or a migraine (as my dear next-door neighbor and friend Sheryl calls it ). I just call it one big pain in the head!! Well, I prayed not to let me have the nausea. I hate throwing up. But no matter what kind of headache you call it; they are terrible.
The good part of waking today:
I woke up reflecting on the wonderful dinner last night. Our church’s associate Pastor Pieter DeVlugt and his wonderful wife Noreen took us to dinner last night after hearing of my AD diagnosis and because they would be leaving for vacation in a few days. We enjoyed so much their company and the laughter of shared stories going back and forth. I remember especially when they prayed for us, before we took off in our separate cars. I couldn’t take my eyes off their faces that night, so thankful to God for the love we all felt.
But as I lay in bed today I remembered that when we ended those ongoing parting see you when you get back’s, my eyes finally rested on Tim’s face as we continued those long goodbyes that don’t end because you keep finding more things to say and hugs and more “see you on Sunday” wishes. I just couldn’t stop looking at their faces and finally my eyes rested locked solely on Tim’s face alone. He looked so handsome and tall. I remembered how much I loved his always smiling face and his height when we first met. I loved his height cause it made me feel so small and protected! But this morning as I woke up, I found myself surprisingly crying as I pondered all of the wonderful time last night. And I just couldn’t understand it; or stop those silent quiet tears skiing down my cheek. At first I thought I must be sad about the Alzheimer’s and those lost brain parts in my damaged brain lobes the neurologist says are causing dysfunction. But I don’t think my brain was listening to my heart at all!!! Cause as I wiped away the sleep’s obviously uninformed-brain-fogged-you-don’t-really-know-what’s-going-on-in-my-heart-tears, I realized I wasn’t sad at all!!! I was crying silent tears of joy and thankfulness as I feel so loved and grateful for God and every loved one in my life!
And I wish everyone could know what it feels like to be loved this much by God, family and friends. I am so truly blessed!!.
Friday, August 14, 2009
Wife 56 with Alzheimers!
Well folks, I am going to give this a try! !
I will start with a little background about my wife and I. We have been happily married for 15 years. This was a second time around for both of us, and as the old song goes: “ Love is lovelier, the second time around, just as wonderful, with both feet on the ground”! This song was very true in our lives and hearts then and even up to now! At the time of our marriage, my wife’s daughter Thalia , was 19 years old; and my daughter Brittany was 3, with sons Adam 6 and Nick 9. You may have figured out that there is an age difference between us, as my wife is 9 years older than I; which really works for us cause I was looking for someone mature and grounded. And as my wife was looking for the same, she confessed she considered me as her own “modern day Jimmy Stuart”; even stealing a famous beloved line in the Stuart film “It’s a Wonderful Life”; where Jimmy Stuart’s Dad in the film tells him (and my wife told me also) “Son, you were just born old”.
Everything was going really well for the first 5 years until my wife started to become very ill and then after going thru15 HMO doctors, a neurologist finally diagnosed her with fibromyalgia in 1999. This fibro had an evil bag of tricks that included: debilitating chronic pain that required a wheel chair part time, chronic fatigue syndrome and severe cognitive problems. Her health deteriorated until 2001 when she could not work any longer and finally was disabled thereafter.
With the chronic fatigue one can sleep soundly for 8 hours or more, and wake up exhausted upon rising or just after a few hours later. With Fibro, one can also get a lot of “brain fog”. So all activity is planned in moderation and even fun activity has to be budgeted to retain energy. Well, since about 2006 her “Fog” has gotten a lot foggier. We have been battling this fog in my wife’s brain for years now crying out for help, but sometimes it seems the health system shrouds a fog far worse of it’s own, as whenever we go to the doctor’s, it seems we have to fight for everything, even for more minutes more over the 10 minute rations of time that is the norm these days.
Well this last doctor, a neurologist, said to her “I cannot find anything wrong with you other than Fibromyalgia-related cognitive disability because your MRI came out normal. If you had Alzheimer’s it would have shown up on the MRI, you don’t have AD. (We didn’t know at this time that a Pet Scan was the test needed to be done) Finally, as he turned his back on her one more time walking our the door to the next 10 minute patient; my wife totally out of character, stomped her foot and yelled to his back: “No!! So, what am I supposed to do, just keep getting worse and worse and worse!!” It stopped him in his tracks; and he said ”Okay, I will order a Pet Scan”. Well the yelling did it, cause he ordered a Pet Scan in April 2009 which showed brain damage and a diagnosis of Early Onset Alzheimers, and she was put on AD medicine right away.
We flew out to New York City’s Neurology Institute at Columbia’s University’s Presbyterian Hospital’s Neurology Institute for a second opinion from the renowned Dr. Carolyn Britton and she confirmed not only was it Early Onset Alzheimer’s disease; but that my wife had had it since my wife was in her 40’s (just around the time fibromyalgia started and all the awful cognitive problems fogged her days.)
There are many concerns on my mind these days, namely because my job pulls me away from the house every day and I am not able to spend as much time with her as I would like. I am working on ways to work 2 times a week outside the home and then eventually being able to run everything out of the home. We have no long term health care plan as most people do not plan for that until 60 or so. She does have disability Medicare which is a God send; but we need to make changes in supplemental medical insurances because the choice of primary physicians and neurologists that are basically “Medicare doctors” seem to all be substandard.
I am doing this blogg to share our experiences thru this juncture of our life with others but hopefully also have our readers share and perhaps encourage others living with loved ones with AD.