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Greetings from the new guy
Geeber
Posted: Thursday, May 28, 2015 6:26 PM
Joined: 5/28/2015
Posts: 18


I'll first say hello to everyone here.

I love to write...it's one of the pleasures my forgetful mind currently allows me to enjoy without hindrance.

I was diagnosed with early onset AD approx. March 2014.

About a decade prior to diagnosis (2004 +/-) I would have random episodes where I would not recognize a mile or more of driving routes or landmarks. I was traveling towards custom home building sites where I worked as journeyman plumber. When baffled and bewildered, I simply drove until I recognized something familiar and proceeded to the job site. I traveled the same work routes from 1999 till 2004 when the first memory loss episode occurred. I was puzzled by the occurrences but not enough to see my doctor until 2014 when enough episodes had accumulated. Because of these driving with memory loss episodes, I think I'm deeper into AD than first believed.

I'm no longer driving. I sold my truck mid 2014 and my 07 Harley Davidson in 2010. It was too risky to take a chance on collision.

My wife goes to work and I stay home, safely and independently as I can while she's gone. She joins me for lunch every day. She's always watching out for me, mindful of some future time when I may not be left alone. I regularly find myself wandering the kitchen looking for cooking utensils to cook oatmeal or Sausage and eggs. What ever I make, it's all done after some hokey-pokey wandering. I'm trying to manage stove burners, writing mental notes to never again leave a burner faintly flaming through the day or night. So far so good on that one. Check, check n re-check. I open the bath medicine cabinet wanting to shave. I don't recognize anything on the shelves that I might need for the task. I open the drawer, retrieve my toothbrush and remember I need shave cream. I open the med cabinet again and stare deeply into the white metal box with shelves. I stare deeply into the sink bowl a while...thinking...Aha! The shave cream is right there on the left. I shave..after trading toothbrush for razor. Ta-Da, no facial cuts. I want to do a load of laundry, retrieve my basket of soiled. Enter laundry room to find the washing machine is already loaded and running....puzzled...it's my dark items. I realize I started that and forgot. It's weird being aware that my memory is acting the way it does, yet I still wander to and fro, staring deeply at nothing, trying to remember what it was that I wanted to do just seconds before I forgot. I think about it, but I can't correct the mis-steps, confusion and disorientation as I manage my daily activities.

I find that I cry a lot. Whacky hormones and a pot-hole in hippocampus. It's the silly cartoons when passing through while channel surfing , or the monster truck mud bog rally.

It's motocross loopty-loops vroom vroom sigh...(I miss my Harley). Chick-flicks...they really get me going, I'm a blubbering cry baby, with a pocket full of tissues.

A National Geographic episode of National Parks. Beautiful rivers and streams, Dog Woods and singing birds....I'm wiping tears the whole documentary.

I'm a romantic wanna-be writer, ex-plumber, ex-construction worker, ex- truck driver, ex-Harley rider, trying to manage the circles I wander around the house. I mourn the loss of what was and used to be.

I get annoyed when I think too much about how many wandering steps it takes to make my breakfast or lunch. That's only part of the problem. I scare myself when I research AD, but, I'm trying to understand the thing that entrapped me. The science of it, so confusing. I've never been a person who wasn't interested in how this or that thing managed to tick. I'd take the thing apart and put it back together until I understood it's mechanics.

Folks used to call me to fix or install complex plumbing and mechanical systems. Blue prints and schematics for my system designing pleasures. Shaving my beard is now a mixed up 12 step procedure. I should be glad I'm retired and departed the industry owning the admiration and respect of general contractors and home owners. I mourn the loss of my strong and coordinated construction worker hands.

I'm aiming high, trying to have fun and enjoy life as much as I can in the meantime.

I do appreciate you all being here.





TayB4
Posted: Thursday, May 28, 2015 7:34 PM
Joined: 8/8/2014
Posts: 886


Geeber,

Welcome to the boards. My husband was diagnosed with MCI in November 2014, and like you, he stays home while I go to work. I appreciate you taking the time to write how things are from your perspective. It helps me to understand how my husband feels, as he sometimes has difficulty expressing it. You will be able to get a lot of information by reading the posts here. Take care.

llee08032
Posted: Thursday, May 28, 2015 8:03 PM
Joined: 5/20/2014
Posts: 4408


Welcome, Geeber the new guy.

It's weird being aware that my memory is acting the way it does, yet I still wander to and fro, staring deeply at nothing, trying to remember what it was that I wanted to do just seconds before I forgot. I think about it, but I can't correct the mis-steps, confusion and disorientation as I manage my daily activities.

I really related to your post. The walking around staring trying to remember what I set out to do! Also I feel it is weird sometimes to be acutely and hyper-aware sometimes of every little misfire in the brain when I forget something or do something wrong. When I lose or misplace something I have difficulty retracing my steps and usually have to give up until the item object or thing just shows up somehow. Some things do show up somehow that I was looking for and there is a brief moment at times when I can remember placing them and at other times no recollection at all.

Please start writing things down as we cannot always rely on those mental notes. Also a timer for when your cooking might be a good idea. Be safe.

Lisa Ramey
Posted: Friday, May 29, 2015 4:59 AM
Joined: 6/20/2014
Posts: 160


Geeber,
Welcome. I too am a member of the 2014 class of Early Onset. You are an excellent writer. I hope you visit and post often. My writing has been narrowed to my little BlackBerry, same goes for my reading. That sucks.
Those starring spells occur with me as well. They get longer and longer.
Well as we say here in Metro Atlanta, Bless your heart. You take care.
Lisa Ramey

Paul Hornback
Posted: Friday, May 29, 2015 8:52 AM
Joined: 8/9/2013
Posts: 584


Geeber, welcome to the message boards. Here you will find hope, encouragement, and information from those who are walking the journey along side you.

Your story sounds so very similar to mine. I was diagnosed in 2009 but had symptoms many years prior. I have also had to give up driving except around the farm where I don't have to worry about traffic or making poor decisions that might impact others.

I was an engineer. Now I have trouble trying to assemble the easiest things. It takes many hours to do what took 20 minutes before. Reading instructions, interpreting pictures, and determining how things fit together just takes so much more time now. Plus, I usually get it wrong and have to start over again. Frustrating but I'm glad I can still do some things on my own. Ditto the part about shaving! On my foggy days it is confusing as I stare at all the things I need to shave. On those days, I generally bypass the morning shave!

I also love to write. It is therapy for me as I write about living with the disease. I encourage you to continue in your writing and think about publishing a book about your journey. You might also consider starting a blog so others can hear your thoughts, struggles, coping strategies, and inspirations.

So glad you've joined us and hope you will continue to post and comment.

God bless, Paul



Jo C.
Posted: Friday, May 29, 2015 1:03 PM
Joined: 12/9/2011
Posts: 13593


Well hello there and a very warm welcome to you, Geeber. It is wonderful you found this soft place to land where you will be totally understood.

By the way, you are an awesome writer, express yourself well, and we hope to see much more of it. I do understand how devastating this diagnosis was for you and how much you miss all that used to be.

The one thing I do "feel" from your writing, that despite the poignant tears that fall when they may, you are a very upbeat person who is continuing to put one foot in front of the other, and are making the best of whatever sails past.

I am glad Paul saw you and dropped on in, he is a wonderful person with so much grace of spirit and just a very cool guy. You two should make quite a pair here on the Forum. It is our blessing to be sure.

We are here for one another and that now includes you too! We look forward to getting to know you better.

J.


Geeber
Posted: Friday, May 29, 2015 1:42 PM
Joined: 5/28/2015
Posts: 18


I'm quickly meeting new and compassionate forum friends. There I go again with the eyes tearing up. It's a very emotional journey I'm finding out.

My wife coordinated our dental visits to land the same time yesterday. Both of us in for cleaning, etcetera. The dentist located a failing antique filling clinging loosely to a cracked tooth in my mouth. The hygienist asked that I sign a paper acknowledging tooth 15 will get a new crown and linked my signature to other remarks that I did not read. A waiver perhaps? The hygienist stood next to me as I signed the paper. She reminded me to scratch in today's date. I looked at her, then to the paper and back again. I stammered, "what's today?" She said " 5/28" I penned the two numbers she told me on the line. I pressed the ballpoint to paper to add the year. My mouth hung open, I was feeling sheepishly ignorant. I had no idea what year it was or what number to place next to the 5/28/? For me, this was a new and significant I forgot it moment. I had to ask my hygienist what year it was. I then explained my diagnosis of early onset AD. She offered her own warm and compassionate sympathy.

I've become so dependent on my wife regardless of how independent I may appear to others. My family knows my limitations. My wife is always reassuring and loving. I pray I never hurt her feelings as things progress in my brain. I'm sixty-one and she's three days younger. We met when we were both nine years old at church.

Today I contacted special people in my life, my brother and our church youth pastor/building contractor. The youth pastor is accepting my gift of a truck load of construction tools I no longer use. My brother is accepting a pile of mechanics tools, all resting snugly in a five drawer locking chest. This tool chest accompanies an assortment of other loose tools. I must take care of business while I can still make the executive decisions.....*dabs tissue to eyes* I was certainly passionate about owning those tools!


Jo C.
Posted: Friday, May 29, 2015 3:18 PM
Joined: 12/9/2011
Posts: 13593


You have a beautiful and generous spirit and your light shines very brightly, Geeber.

You also have an amazing wife - she too is welcome to come onto the Message Board and to any Forum if she wishes.

You two have grown up together and are a mighty team founded in love and will continue to be so.

We are truly delighted to make your acquaintance.

J.



Mimi S.
Posted: Friday, May 29, 2015 3:40 PM
Joined: 11/29/2011
Posts: 7027


Geeber,
Another warm welcome. We are so glad to have you around. We will enjoy reading what you write.

Geeber
Posted: Friday, May 29, 2015 4:25 PM
Joined: 5/28/2015
Posts: 18


Geeber,
Another warm welcome. We are so glad to have you around. We will enjoy reading what you write.


I'm recognizing an obvious fact about these message boards:

I recognize that I've tapped into a nourishing fountain of inspirational support and knowledge.

How can anyone not shed a few tears after receiving such warm welcome?
How wonderful it is to be recognized and encouraged through words!

w/e
Posted: Friday, May 29, 2015 9:48 PM
Joined: 3/7/2012
Posts: 1747


Geeber, thank you for your post. Your writing touched my soul. It made me tremble. While I was reading it, I kept hearing the echo of my immortal beloved's voice. He named, My Blue Brain, his dementia/ AD manuscript. The manuscript had not only words, but also sketches, paintings, drawings... I am his widow now.
Don't hold back your feelings. Let your emotions be. Unbounded like a butterfly.
Yes, Geeber, it is okay to cry. It will help you soften your pain a wee bit..
Come back often. Stay here with Alzconnected. May this little corner of your life be an oasis to your mind, your heart, your soul.
I know your beloved wife will continue to hold you, to kiss you, to comfort you. She will be forever a source of moments of joy, tranquility, calm, and peace. The love you have for each other is eternal. Take comfort.
Hugs to you both.

Mimi S.
Posted: Saturday, May 30, 2015 8:16 AM
Joined: 11/29/2011
Posts: 7027


Hi w/e,,,,
Is there a way you could copy some of his writings and drawings and every once in a while bring them here?

So few folks going through this have the ability to put their feelings into words.

Jo C.
Posted: Saturday, May 30, 2015 8:42 AM
Joined: 12/9/2011
Posts: 13593


What a lovely idea, Mimi.

Geeber, I forgot to tell you - the Alzheimer's Assn. has a 24 Hour Helpline that can be reached at: (800) 272-3900. You can call for information, support and other assistance.

IF you call the Helpline to ask for support or to vent, etc., please ask to be put in touch with a Care Consultant. Consultants are highly educated Social Workers who specialize in dementia and they are very supportive. You just need to ask.

There is NO fee for this service. Both yourself and your wife are welcome to utilize this lovely Helpline.

And dear Geeber, I like to tell our friends here, (you are our newest friend), about the fuzzy-wuzzy Winnie the Pooh quote:

"Always remember that you are stronger than you seem, braver than you believe and smarter than you think you are . . . . "

Winnie was a very smart bear - bet he could ride a Harley too! Ha !

J.


Geeber
Posted: Saturday, May 30, 2015 9:57 AM
Joined: 5/28/2015
Posts: 18


Thanks for the support info Jo C. I'll be sure to add the help number to my phone. I made a memo to myself to remember just that.

I read to my wife the writings here for the passed two days, the whole thread complete. She cried, and asked that I copy the words I write and place them in a file. My wife, she's a devoted organizer of things and stuff. My wife, she always has my back. She asks that I keep writing, so here am I.

My wife, she's my perfect match.

My wife, who as a grade school gal was perched on a fence, a pair of sandals on bare feet. I stood beside her, a lanky school boy with adoration in young heart. As we chatted, as school kids commonly do, I was aware of those feet. I told her I thought her feet were so pretty. We both have that memory when reminisced, then I seize the moment to remind that it's true.

My wife, who as a grade school gal walked with me along the banks of a tiny clear creek. Foothill mountains surround us, we strolled rock to rock. She walked the rounded surface of an old fallen log, it kinda wobbled and rolled but I wouldn't let her fall. I grabbed her hand to prevent tumbling to rocks and cold water. Instinct said to save her but my heart said keep holding.

Two young kids, just being young kids...

Two moments in time...

Two memories so fresh...

I loved you back then...

I love you more so now...


llee08032
Posted: Saturday, May 30, 2015 10:08 AM
Joined: 5/20/2014
Posts: 4408


(((((Geeber & his wonderful wife)))))) hugs....
alz+
Posted: Saturday, May 30, 2015 6:06 PM
Joined: 9/12/2013
Posts: 3608


Geeber the New Guy -


your description of shaving and laundry and those big moments of forgetting something (or actually not being able to recall it - it often shows up sooner or later).


That you gave away a truck load of TOOLS is one of the most wonderful actions I have heard of ever. What a gift! The passing the torch. I still can't give a way a red dress meant for a 30 year old in marathon condition. Giving away is easier than getting rid of but stuff remains I wanted gone years ago. Inertia like lead legs and arms.

The emotional states, weeping - some times it is because something is just so wonderful - a robin, a yellow finch that comes to the feeder, a bear cub trucking across the road. I think if I am crying I won't be yelling.

welcome, look forward to learning from you. People in the trades are saints when they come to help.

love and courage (and love to your wife)


Be Strong 2
Posted: Saturday, May 30, 2015 6:39 PM
Joined: 12/14/2011
Posts: 1751


Geeber,

Welcome. Although I was a caregiver, I can see myself in much of your self description. I don't get the confusion but often get caught up in doing so many things that I do a lot of step retracing. The thing with me, it's been a lifetime characteristic. I'm also a teary type guy. I've always been that way. Yet, I didn't shed a tear when my first wife left me or at the funeral of my beloved J, just two months ago. Go figure. She was only 62.

As I'm beginning to clean out the house, I'm coming across a myriad of notepads. These are indicators of the struggle my dear J was going through, from before we even met. It tells me, that although her Alzheimer's journey seemed quick, 5 years from diagnosis to death, there were many years of struggle, alone.

We were married just 11 years when she passed. I miss her, and yet, am comforted that she had an easy (from what I could tell) journey.

Just keep facing the problems, and enjoying the highpoints, one day at a time, just as they arise. Be thankful for an understanding wife. Hold her tightly.


Remember, we're all in the same boat; and the darn thing leaks!

Bob

Jo C.
Posted: Sunday, May 31, 2015 8:40 AM
Joined: 12/9/2011
Posts: 13593


Dear Geeber: Well, you have me with tears. What sweet writing that captures your beloved in words that paint a perfect picture. Your wife must be just awesome in so many ways. You met at nine. That sounds heaven-sent. My husband and I met at 14 and I understand the growing up together and the life that one builds upon that foundation. I am so glad that you have that love in your life.

You are a new friend-Member, but you are already bringing us the gifts of a different perspective and of positives that lighten the spirit and reminds us not to pitch a tent and camp out in the gloom.

It looks like YOU are a gift to US. Aren't we blessed that you found and came to this place?

You will find many new friends; amongst them is Lisa who has an upbeat approach and stands like a stalwart warrior using her most hearty tool - humor; Paul uses his gentle and very thoughtful ways in good perspective reaching out in humility and understanding to give to others.

You will meet Mimi, she is a very strong person who was diagnosed with dementia quite some time ago. She is one of the Peer Volunteers here and lives the "Best Practices," with diet, exercise and socialization and has had excellent results. She also is an advocate and very active within the Alzheimer's community and also has attended and been involved in Conferences up to Washington D.C. level.

Some of the other "old-timers" are llee and alz+ and so many more that I'd better stop introductions or this will go on for pages. Just know we all welcome you with open arms and open hearts.

With blessings wished for both you and your dear wife,

J.


Geeber
Posted: Sunday, May 31, 2015 10:50 AM
Joined: 5/28/2015
Posts: 18


Good Morning Every One....even though you may have arrived to read this minutes past noon.

I've questioned for over a year now and sifted the internet for information where so much is not as it seems. I've noticed changes in the way I walk. It's been difficult to find or get a straight answer from somebody who really knows. The most I've found in relation to my question "why and how is this happening?" is it simply has a connection to Alzheimer's. Not good enough info for me.

I suppose I could have simply asked the knowledgeable ones how and why this is happening but I seem to turn any fleeting thought into a story.....

I'm trying to make sense of my constant imbalance and the goofy gait I've adopted. So, I look back with hind sight to the years between 2000 & 2008. Here is when I began to have those odd incidents of confusion and disorientation while driving to work, navigating routes taken many times before and where oddly I recognize no landmarks or street signs. I'd keep going until I recognized a landmark or sign and then continued driving to job site.

While parked I'd ponder the mystery of driving foreign roads that should have been familiar. Beyond a line of security fencing men were busy preparing for their own work day. I'd unload tools from my Tundra's locking bins. Tools matching goals for the day. I was navigating dangerous hazards to reach my work zone, never realizing the hidden and damaging brain cell alterations taking place in real time. I rushed along in speedy fashion as always. Like a monkey climbing trees I'd navigate bouncing scaffolding to heights that always made me shiver. I'd confidently fly up and down stairwells to various floor levels. This day I took a nose dive face first down concrete steps, falling like a felled pine tree. I reached for an edge where railing was yet to be built and braced for a tumble over the edge to concrete steps about eight feet beyond. I didn't fall beyond the unfinished railing base but did smack hard with knees, wrists and hip taking the hit.

Since that day I've fallen a few times in similar fashion. Once from steps at home and twice at other job sites. Each fall landing on wrists, knees and hip. Retirement suits me well. I've eliminated the job site hazards from my life. No more sharp spikes of steel re-bar embedded in concrete. No more unfinished stair wells. No dizzy heights on scaffolding where a single fall is guaranteed to be the last. These are only a few of countless deadly encounters available to claim a construction workers life.

I've developed a sense of insecurity as I walk across any surface lately. I liken my goofy gait to how I might appear if I drank a few shots of hard liquor with an empty stomach.

I'm now a clumsy and imbalanced one, just wondering why and how it struck me.


Agent 99
Posted: Sunday, May 31, 2015 1:38 PM
Joined: 6/7/2013
Posts: 2166


Hi Geeber,
I am my sweetie's care concierge. I changed my title because I feel that I manage more than his care plus wanted to keep up with the changing times of concierge medicine!!

My sweeite has a form of dementia called normal pressure hydrocephalus. The characteristic symptoms of NPH are gait/balance disturbance, cognitive impairments and incontinence (mostly urinary but also bowel). The symptoms do not necessarily start at the same time and the order is random. The length of each symptom to the next is also not standard. Many doctors do not remember NPH from their medical studies so diagnosis is typically delayed or never made. Misdiagnosis as ALZ or other dementia is common. One of the key finds on CT scan (sufficient) or MRI are enlarged brain ventricles. NPH is considered a "treatable" neurological condition and sometimes the impact can be slowed and reversed to some degree. It is treated by placing a shunt in the brain to drain excess cerebrospinal fluid that is believed to cause the enlarged ventricles. My sweetie was not aware of his problems (a condition called anosognosia), was falling almost daily and then he took a fall on the street walking our dog, Chaos, that resulted in a severe TBI and NPH diagnosis. Sadly, his enlarged ventricles were detected 10 years earlier on a CT scan following a car accident but at the time the neuro didn't even consider NPH or tell us to watch out for symptoms.

I only mention this because, from what I have read on this forum, gait problems typically develop in ALZ patients well into later stages than where you seem to be based on your writings.

There may be a completely different reason for the gait issues but it might be good to verify with your neuro if NPH was considered and ruled out. I've attached guidelines for diagnosing NPH. Unfortunately, NPH is like an orphan disease still in infancy - first described in literature in 1960s.

I do hope that you find out what is causing the gait and balance issues. My sweetie has been going for PT 3 years now. He wasn't aware of his gait problems but the PT has been beneficial in strengthening and also convincing him that he needs to be attentive to his gait/balance and bracing himself when necessary.
http://www.unilim.fr/campus-neurochirurgie/IMG/pdf/part%202diagnostic%20of%20NPH.pdf

Geeber
Posted: Sunday, May 31, 2015 4:33 PM
Joined: 5/28/2015
Posts: 18


Hello Agent 99,

Thanks for that information. I was informed of the existence of NPH about a year ago and the possibility it may have a connection with my particular dementia. It was ruled out if memory serves me right. I've had two MRI's one with contrast. I've had a CT scan not long after the pair of MRI's. I requested CD copies of all imaging related to my brain and cervical column. I copied those to hard drive on my PC. I can see the ventricles defined in the CT scan but I'm ignorant of what I see. The pair of ventricle impressions do not appear to be so cavernous as some samples that I've viewed. But, I'm a plumber construction worker and would definitely recognize a silhouette pair of cast iron pipe wrenches if part of the image. My Cervical spine is seizing up with bone spurs and ROM is very limited. Occipital headaches are practically 24/7. Anyway, I'm scheduled for a visit to San Francisco's UCSF hospital where there is an abundance of extremely talented and highly qualified neurologists. I've reviewed nearly 60 or so sets of medical credentials for their doctors of neurology. The majority are specialists within specific areas. I'll be seeing a neurologist specializing in elders and/or people with dementias. My current neurologist is through Kaiser. In that I am comfortable. But, I do think the most modern of advancements, technologies, procedures, treatment trials, etc. await me in the hospital of UCSF.

Thanks so much for your help!


Can't Be Marie
Posted: Sunday, May 31, 2015 6:00 PM
Joined: 10/6/2014
Posts: 29


Hay Geeber -

Loved your writing & welcome to the board. We all long for what we used to be. I was a radiation therapist, treating mainly cancer & a few other conditions. I also was an x-ray tech. Doing cat scans & mammograms also.

Grad to see u here.

Marie

Del Rickel
Posted: Sunday, May 31, 2015 6:24 PM
Joined: 4/10/2014
Posts: 3


Hi Geeber, If you handled plumbing like you handle words, you were a hell of a plumber indeed

You are remarkably lucid in your writing

My wife is 62 with a 2 year diagnosis of EOAD

Have you tried any form of self help, to delay the progression of the symptoms

Good luck

Geeber
Posted: Sunday, May 31, 2015 7:10 PM
Joined: 5/28/2015
Posts: 18


In response to the many new and compassionate friends here who have found pleasure in reading my words I say thank you for saying so!

Over several years time I've discovered an interesting phenomenon taking place in my language.

When I talk, I never ever talk as fluently as I write. Written words flow easily from the keyboard but not from my lips. Any stammering tends to disappear into these thin spaces found between written words. When writing I have plenty of time to form and then reform thoughts then make a few grammatical corrections, and do a spell check.

I struggle greatly to utter anything that remotely resembles what I write.


Jo C.
Posted: Monday, June 1, 2015 3:56 AM
Joined: 12/9/2011
Posts: 13593


Geeber! You hit the jackpot! The University of San Francisco happens to have one of the best known dementia clinics in the United States!

They are renown and people come from all over to get seen by their multidisciplinary team. Have your wife Google them online, their site has some very good reading with a lot of information.

I am so glad for you that you will be in very, very good hands.

I got my Master's Degree from the University in SF and boy, they put on one dickens of an impressive graduation ceremony. I got my RN in Southern California, so I have been educated in both ends of the state.

You will have to let us know how that Neuro appointment goes, we will be sending positive thoughts your way.

J.


llee08032
Posted: Monday, June 1, 2015 7:58 AM
Joined: 5/20/2014
Posts: 4408


Geeber,

I miss-step and recently took a tumble down the last 3 steps.
I catch myself doing this strange thing where I cross my right foot over my left foot while trying to walk! it's like I can't seem to control this from happening but at least at this point I am catching myself (un-crossing my foot). I do not believe I am in the later stages as someone mentioned is the case when this can happen. I think it is a problem with signaling to the brain and that every body system can be impacted by the disease. I also have problems with vision and have had a totally normal eye exam.

I am glad that you are retired and did so before any serious injuries occurred on the job! Stay safe and do everything you can to accommodate your current needs.

llee08032
Posted: Monday, June 1, 2015 8:01 AM
Joined: 5/20/2014
Posts: 4408


(((((Can'tbeMarie)))))

Good to see you back on the board!

alz+
Posted: Monday, June 1, 2015 9:52 AM
Joined: 9/12/2013
Posts: 3608


Falling -

I had the uneven trudging gait, my grandson recognized it age 3. Shortly after I was diagnosed with dementia, "Alzheimer's".

More than a year after that the eye doctor found I vision loss and tunnel vision.

One can test their own peripheral vision. It makes for walking on uneven surfaces tricky and stairs require concentration.

An altered gait is part of a host of symptoms, and there is no STAGE they need to fit into. Your interest in finding an answer to WHY, we all have that question. Looking forward to hearing what SF says to that.

Considering dementia has been part of human life for all of written history shines I different light on the subject.

Look forward to reading more of oyur stories.

love and courage


alz+
Posted: Monday, June 1, 2015 10:00 AM
Joined: 9/12/2013
Posts: 3608


Geeber wrote:


Over several years time I've discovered an interesting phenomenon taking place in my language.

When I talk, I never ever talk as fluently as I write. Written words flow easily from the keyboard but not from my lips. Any stammering tends to disappear into these thin spaces found between written words. When writing I have plenty of time to form and then reform thoughts then make a few grammatical corrections, and do a spell check.

I struggle greatly to utter anything that remotely resembles what I write.

What you describe is part of my experience, I can write cogently because typing or writing by hand allows me time between each word,,a pace that speaking does not have. There is no interruption to my thought, no one waiting for an answer, there is time enough to form thoughts and put them down.

And I can edit before it is posted.

Very grateful to be able to write. I run on in my posts at times because a flow begins and I write until it ends.

Love your writing style, conversational and smart.

share info from SF - when one gets help or info so many can benefit despite , even if all of us are having a unique reality as we live with dementia.


Geeber
Posted: Monday, June 1, 2015 12:14 PM
Joined: 5/28/2015
Posts: 18


Hello alz+

I will keep my new extended family here informed with updates. The psych exam that was performed more than a year ago diagnosed me with MCI but after a three month passage of time a return visit with my neurologist told me and my wife it was more than MCI. I never heard the word Alzheimer's during this visit but I identify with EOAD. From my limited understanding of stages I feel I'm slowly tip-toeing towards the EOAD exiting threshold to second stage. I expect doctors at UCSF will be more complete with their diagnosis.

Another fleeting thought this very moment flows into story mode:

A restful sleep is so elusive. Several physical issues are to blame but the most invasive is my CPAP machine and cervical spine pains involving bone spurs and a few moderately herniated discs.

I awake almost nightly at the magic hour of 3:00am +/-. My mind wanders from thought to scattered thought. The whispering air pump next to me annoys so I remove the rubbery nasal apparatus and press the off button. The bedroom window is open to fresh and cool night air. The trees outside have their indigenous feathered species perched in branches.

Northern Mocking birds seem to rule their neighborhood turf. The multitude of varied bird songs come from that one grey bird. This bird commands total avian respect of air space around our duplex apartment.

Back to my sleepless night....It's 3:00am, my back pressing gently against my wife as she sleeps. My mind by now is flowing thoughts, mostly a disjointed jumble of words and thoughts that bounce around yet flowing along like a stream of ticker tape stocks. I crave the sleep and I'm keenly aware that my brain should be healing and rebooting at this wee hour every night. Outside my bedroom window I hear natures nightly music. A repetitive encore, a soothing montage of bird song. The music is enchanting, not intrusive. A still nights gift to sooth an anxious soul. I fight the urge to wander down the hall way to my recliner. I convince myself that Sealy mattress comforts are what this body needs. For every disjointed thought there's a short string of bird song to communicate calm. The variety of calming bird songs flow at a rate that matches my ticker tape of thoughts. The beautiful sound will often bring forth a tear or two. I slow my breathing with purpose to relax. The soothing song of a Mocking bird fades to a tunnel's echo then into that first stage of sleep. As I fade back into restorative sleep I'm aware that the beautiful bird with fancy grey wings is falling asleep too. Another bird serenade accomplished its goal...


Jo C.
Posted: Monday, June 1, 2015 12:16 PM
Joined: 12/9/2011
Posts: 13593


Vision can indeed be affected by the effects of dementia and depth perception can be hit quite hard.

A person with dementia will benefit by routine visits to an ophthalmologist (not an optometrist - not the same), to keep in good stead with assessments.

I did read in a technical text, that glasses can also contribute to issues when using stairs. If one has trifocals, depth perception can be affected as one looks through the lenses while descending down the stairway.

I would discuss this with the ophthalmologist and find out if bifocals or trifocals may be an issue for such instances if one wears glasses in this category.

J.


jfkoc
Posted: Monday, June 1, 2015 4:32 PM
Joined: 12/4/2011
Posts: 21242


UCSF...yes, you are indeed fortunate to be able to go there. They are very big into Parkinson's and Lewy Body Dementia and feel certain those will be looked at as well as AD.

When do you go?


Geeber
Posted: Monday, June 1, 2015 5:20 PM
Joined: 5/28/2015
Posts: 18


UCSF...yes, you are indeed fortunate to be able to go there. They are very big into Parkinson's and Lewy Body Dementia and feel certain those will be looked at as well as AD.

When do you go?

(jfkoc)

My appointment is coming August. I don't remember what day but I must expect to be in test modes for at least four hours. Beats the 1.5 hour or so pencil test invested at Kaiser. I will bring several MRI's and Cat scan that Kaiser produced along with my psych evaluation from Kaiser. Even without the notes of that nice Kaiser PHD involved with testing me, there's no doubt in my mind I'm here on this message board because I need to be. I experience all the glitches and errors which convince me. UCSF will be much more thorough, absolutely without a doubt.

My wife now handles all appointments, scheduling, planning and shuttling me from here to there and back.