FRIENDS IN CYBERSPACE

Early on with Ken’s Alzheimer’s I joined a support group sponsored by our HMO.  My friend Madalyn, whose husband was also an AD victim, picked me up for my first meeting, and for a time it was a good thing.  I would hate to use the term “Misery loves company,” but I’m going to use it anyway.  Perhaps it was the motivating force for going — at least in the beginning.   Finding others who share the same burdens, the same dilemmas, and the same problems is often comforting as well as educational and helpful.  After all, it is this miserable disease in common that links us together.

However, circumstances change: Madalyn’s husband passed on, the timing no longer fit into my schedule, and eventually Ken couldn’t be left alone for such a long period of time.  No matter how beneficial the guidance and help had been, plus the medical information obtained, attendance for me became impossible, yet I needed something.

Other sources:  Books for starters, Madalyn gave me her copy of “The 36 Hour Day.”  Another friend began sending me scientific updates on the disease, and I continued searching the internet for any new developments.  Johns Hopkins puts out a weekly newsletter covering many facets of many illnesses, including Alzheimer’s.  I subscribed and it arrives quite often in my inbox.  Printed under the headings of any one of the issues are diseases of interest.  Each mini article allows the reader a glimpse of what’s contained in the full paper.  For more solid information you must download the rest of the paper or book for a fee. It’s good to know an abundance of helpful information is available if and when needed.

After reading and more reading plus watching PBS’s specials on Alzheimer’s I found I wasn’t necessarily looking for any further brain scans or definitive breakdowns on the disease.  I felt thoroughly informed as to what was happening to Ken’s brain.  Okay, I understand what it is – now what?  It was hands-on information I needed:  like an in-house support group where I could glean and share tips on how-to skills, in polishing up my own acceptance, increasing my strengths, my endurance, coping methods and picking up on dozens of ideas not even thought of.  Back to the internet – and what a wealth of support group information exists — mostly from people just like me.

The first post of my Blog, nearly two years ago, had an immediate response from Dr. David, a middle-aged psychiatrist who appeared to be much too young for any of this, but was stricken with Lewy Body Dementia (LBD).  I know next to nothing about LBD (which is no doubt lumped under the Dementia Umbrella and is a close relative of Alzheimer’s) Despite my LBD ignorance David was warm and welcoming, inviting me to join his link.  That evening I read several entries from his blog as well as entries from others as far away as Australia, all of them coping with LBD.  I ached for where they were – physically and emotionally — and what they were going through: the victims as well as the caregivers.

Dr. David’s wife Pam is his caregiver, and I’ve noticed, now, when I go to his site and read his entries I find his battlefield has become strewn with his many losses, but he struggles forward enduring as the valiant fighter he has proven to be.  His posts are dotted with what we all feel: anger, frustration, humor, incredible sorrow, and acceptance, but also with lots of information, hope for a breakthrough and some positive signs for more research funding from Congress.  A breakthrough in any of these mind deterioration diseases will benefit us all.

I also find encouragement from writing my blog when I receive comments from people I don’t even know.  Most, if not all, have had experience as caregivers for AD or other related diseases.  For many their battle is over, but for some it’s just beginning such as one woman who was caring for her AD mother and had just been diagnosed with early-onset Alzheimer’s herself.  She was pleased to find my posts are driven by my faith and my personal relationship with God, and took comfort in my writings about what we shared.

From as far away as South Africa I was advised that there is life after Alzheimer’s.

Another message stated simply, “Thank you for sharing your journey with us.”

Writing to me about my post a young woman wrote, “How sweet, and how sad at the same time.  Whenever I read your blog I am blessed.”

“Best of luck to you.  I know how difficult it is.”

From another who wrote, “The hardest thing to deal with is feeling alone, but you are not alone.  We are here and through this blog we can share in your very difficult battle.”

There are many out there who believe the internet is a bad thing filled with perverts, child molesters and ugliness.  It can be.  We do hear, see and read stories of its abuse, and lives ruined because of misguided and inappropriate use.  Simply put, it’s a tool.  Any tool can be used for evil – or for good.

Writing about my journey has brought me peace and has kept me focused.  I often refer to my computer – especially the far-reaching internet — as my electronic therapist, which I may have stated in previous posts.  Not only can I tell my readers of the good moments in our battle against AD, I can vent.  And during the tough times if I need some encouragement all I have to do is go to my pages of comments and read all of the supportive words from those of you who have taken the time to leave me your loving, caring messages.   I know that I am not alone in this frightful journey.  Thank you.

Originally posted 2010-11-14 03:40:53.

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