I've been asked to speak for a 3 to 5 minute segment prior to our Walk. Luckily I have documented my entire journey because of my engrained job skills. Also, I have had 3 or more opportunities to speak. Each time I use a format that is saved on my computer but "tweek" it for the specific event. I'll attach a copy of my proposed speech below from my "Word" document.
Hello, Thank You for coming out today. What a nice day! This Memory Walk is an important event in the efforts for ending Alzheimer’s Disease!
We all need to contribute all we can and this is a great way to start!
My name is Tom and I have Early On-Set Alzheimer’s Disease.
EOAD is when a person is found to have Alzheimer’s prior to age 65. About 10% of AD patients have Early On-set.
I put and R in it, take some literary license and call it EROADe instead.
That is a new acronym to the medical community but I think it fits as things continue to fall off.
There are positive notes:
- Welcome to my world of no re-runs!
- I am now able to hide my own Easter Eggs!
I apologize but I need these notes to remind me and to keep me focused.
I’m just a regular person with short term memory problems. Intelligent as ever but there are changes in memory, spatial and organizational skills.
I have faith that my current meds will slow the disease so that a cure can be found long!
The cure is a test tube right now, just needs funding to test it!
My wife, Gerry and I live in Camp Hill. Yep, that’s right Tom and Gerry!
I was considered a professional but not in this area, always refer to your Neurologist for info on Alzheimer’s.
I was diagnosed at 58 after 2.5 years of evaluation. I’m 60 now. Married with a strong supporting community of family, friends and support groups.
The AD has progressed but medications have been adjusted to allow me to function fairly well.
Denial is natural but needs to be softened-
- We should never allow somebody to tell us how to do some thing we are considered the expert in.
- Conversely, we need to accept what teams of medically educated people have determined to be the fact.
- I’m deeply in denial but live life per my experts advice.
I’ve got a Vision
- A world where Dementia has been forgotten about!
- A Little about my Journey
- Family history of depression and high Cholesterol.
- TBI in 1982 due to a stoke and auto accident
- 30 days in a coma
- Returned to work 1983 at my old job as an Engineer.
- Lost my Sr Engineering job at Tyco in 2005 due to economic changes. Maybe? My product lines were moved to Asia in time but not all at once. I’m not bitter, it is just they way things are in the world today. I feel that my symptoms started to show up in 1999 or a couple years earlier. So I was given some slack. If they were part of the reason I lost that position- so be it, a fully balanced professional is required for that position.
- Fired from 3 local jobs during the next year due to lack of ability to concentrate and function as required. I even got lost in a stock room of one of those employers. I documented all this information as part of my professional training but it serves as my “Instant Recall” now.
- Entered into a durable Power of Attorney to protect our assets.
My Testing History
- Began evaluation early in 2006 at my wife’s request after getting lost locally and fired. Told our family doctor about getting lost in familiar surroundings, not being able to read more than a sentence without starting over, and confusion that I was experiencing.
- Had several CAT scans, MRI’s, Spinal Tap, Psychological Evaluation and Neurological testing.
- Diagnosed with Alzheimer’s related dementia, June‘08.
- After dx, Dr Shah immediately started me on AD drugs
- Another AD drug and a mood stabilizer was added later
- PET-CT scan completed
- A 2nd opinion was completed at Johns Hopkins, yep, I’ve got it! They asked me to congratulate my Medical team.
I’ll do that on a completely personal note as the Alzheimer’s Association does not give preference to any individuals or medications. My medical team consists of:
My Neurologist is Dr Shah. Stand up if you’re here!
Others that couldn’t attend are:
- My MD is Dr. Patrick Ratnasamy
- My Psychologist is Judith Strickler
- My Physiatrist is Dr Milke
I’d like to share some Insights that might help
- Believe in your doctors and have a positive attitude!
- Keep your mind and body active. Use volunteer activities and a gym
- There is a lot of life to live. Live life to the fullest.
- You are not alone! There are 5.3 million of us and growing every 70 seconds.
- Problems to watch for are:
- Frustration
- You can’t cure the disease or make yourself understood and sometimes you miss speak. Personally, I “Sundown”. Anything can happen before my meds kick in mornings or evenings! Our Caregivers are effected also! Thanx Gerry!
- Isolation
- No one seems to understand what you’re going through. Caregivers are our only hope
- Sense of loss
- It’s hard to accept changes in your abilities. Especially when you want to be in denial. What a conundrum! Find a new sense of worth in a hobby or volunteering.
Please visit my website at http://youngerjourney.com This is a EOAD Support Group that belongs to the members. Leave a note on the Guestbook and join in if you like. That is Y O U N G E R Journey- all one word .com. Thank You to my friend and partner Steve Hopkins for helping with this web page! He is also my financial advisor and is mentioned in my Power of Attorney. Thanx to Tiffnai Chambers of the Alz Assoc. for coming up with this gret name!
My Hope and Challenge
Express concern to your Congressman to pass Alzheimer's Breakthrough Act of 2009 that was introduced in July by bipartisan Sens. Barbara Mitulski (D-Md) and Christopher Smith (R-NJ). S.1492 & H.R.3286 were offered to research while providing more help to caregivers and increasing public education about prevention
Ask to prove us wrong when we think “they won't do squat to change things until they get a big campaign contribution from us”.
Tom Miner’s Story
