Living with EOAD
Editor’s note: This story is taken from a speech given recently by Steve at a church in North Carolina
Hello, my name is Steve Ponath
I am honored to of been asked to come before you today and speak about a disease that has affected me personally. I'd like you to understand that in doing so, I step out of my comfort zone and walk in faith that what I am about to say is Christ centered, and not Steve centered.
I now have to read what I want to say rather than just express it freely, this disease takes away my ability to remember what I want to say and how I would like to express it.
For me, my journey started around 2006, but all came to a head in the beginning of 2011. I lost my job due to my cognitive deficits in February and was diagnosed with highly probable Early Onset Alzheimer's disease in September of that year.
My diagnosis process started due to an unrelated situation. At the start of my diagnosis process I was having an adverse reaction to a prescribed medication. I was having facial tics and involuntary muscle tremors, a possible sign of Pre-Parkinson's disease. I went to a primary care physician and he ordered blood work and a CT scan. Since I was working for one of the local hospitals I set up an appointment with one of the well known Neurologist's to have him read my CT.
This is where my year and a half journey for a diagnosis started.
My wife and I went in and sat down with this neurologist and discussed my entire history. We discussed the issue's with my memory, my inability to follow simple instructions, and the problems I was having at work with completing daily tasks.
Well, 3 Neurologists, 3 Neuropsych Tests, A Pet Scan, and tons of blood work and I got my diagnosis. Early Onset Alzheimer's disease.
The problem with getting diagnosed is this. There is no guide book to Alzheimer's or the associated diseases. Your doctor needs to follow the progression for a period of time. He needs to see the decline in your cognitive functioning. And since we are all so unique, it is troublesome for them to define the disease itself.
When I was working in the Emergency Department of Presbyterian Hospital in Matthews, I had a wonderful ministry there. I even met some of the members here, while working there. I was blessed to be able to pray with patients and their family members. Today that has changed. Now I spend much of my time as an advocate for Alzheimer's.
I have done radio shows, dementia chats on line, and have even been interviewed for the local cable channel Access 21. That interview has even been put on YouTube. I try as I may to break down the stigmas of the disease, and to teach anyone and everyone about it. There is a new breed to Alzheimer's, we are younger and can really help everyone try and understand the disease. We can also help family members find coping mechanisms while traveling on this journey called Dementia.
I for example have no noise filter. If I am in a room or restaurant with numerous people speaking, music playing, and other background noise I hear it all at the same volume. It enters my brain and becomes a jumbled mess. I tend to get over-stimulated and start to panic. Many persons with dementia feel something similar. That is why we are accused of excluding ourselves from family get-togethers. It’s not that we don't want to, our brains just can't handle the noise and excitement. Our coping mechanism is to shy away from crowds and chaos.
If I were to ask you to do anything for a patient, it would be this. To show them unconditional love. We are so aware of our memories fading and losing our sense of self. We need affirmation that we are still significant and needed. Even if we cannot participate in the daily tasks associated with daily life. I know in my heart that God loves me, I just want to know that my family and friends do too.
Secondly I would ask you to help a caregiver or loved one of a patient. Give them a afternoon of respite so they can go and do something on their own. Caregiver's tend to be the forgotten ones when it comes to this disease. As I need affirmation that I'm loved, caregivers need the same affirmation and we as patients are unable to reciprocate that feeling. So friends and family need to step up and let the caregiver's know that they are also loved and cared for.
Here is where I will switch gears and talk about the disease and share a few statistics.
First of all, academics, clinicians, and other professionals in the world of dementia know so much about the disease - the clinical picture; the path it takes; the stages people go through; the things that are likely to happen during and at the end of the disease process. However, what they don't know is the raw and true emotions of the horrible disease. They don't know how one day everything is fantastic, the next your entire world has suddenly caved in. They don't know about the deep rooted, ingrained fear someone living with dementia experiences day in and day out; they don't know the impact it has on relationships; they can't comprehend the financial toll the disease has on entire families; they don't understand the anger, pain, frustration, and heartache associated with the disease. I live it every single day and I feel it in every conceivable way.
Everyone living with Dementia does so in their own way - every individual in this world of Dementia is unique. The symptoms are different for each individual and not one of us can be dealt with in the same manner.
Dementia is the umbrella term used when a diagnosis is not readily available. There is Pics Disease, Lewy Body Dementia, Vascular Dementia, Parkinson's type Dementia, Frontal Temporal Lobe Dementia, and the most popular is Alzheimer's disease. There are over 100 types of Dementia.
There 5.2 million Americans living with Alzheimer's right now, that number is expected to jump to 7.1 million by 2025 and jump again to 13.8 million by 2050.
The cost of Alzheimer's care was $203 Billion dollars in 2013 of which $142 billion was in Medicare and Medicaid dollars.
The projected cost is to rise to $1.2 Trillion dollars by the year 2050.
Alzheimer's is the 6th leading cause of death in the US, and 5th among persons over the age of 65. It is the only cause of death in the top 10 without a way to prevent it, slow the progression, or cure it.
With these few statistics I find it hard to think that our government will not take the proper steps to ensure quality of life for us patients. It is as simple as passing the Hope against Alzheimer's act that is on the senate floor now.
We need funding for a cure today, not tomorrow or the next day. My urgency is due to my not knowing how long I will be able to speak up and be heard. There very well may not be a cure in my lifetime, but I would hope there would be for our next generations.
In closing I'd like to let you know that God, our father sustains me every day. I battle my demons associated with Alzheimer's every day. I call them demons because this disease is not of God. He is not a God of chaos, pain and suffering. He is a God of kindness, love and peace in all things and in all places. I draw my strength from him, with him, and through him everyday to be able to live my life to the fullest.
I would also like to let you know that there are 4 things that I need to know so I am assured quality of life. They are:
Am I loved?
Am I safe?
Am I cared for?
Am I secure?
If I can answer yes to these 4 questions, I know I will be having a good day.
As I stand here before you today I can say yes to am I loved. The other 3 are uncertain at this time because of changes that have taken place in my life. So with that being said, I have to depend on my God for the last 3. He will continue to sustain me in all things today and in my future.
Thank you for allowing me to come before you today and share a little of my story.
May God bless each and every one of you today and as you continue your own life journey.