When I realized I was no longer going back to my job and that I was now retired due to my ‘disability’… I suddenly had a bunch of time on my hands. I didn’t want to be bored to death and become more of a couch potato than I already had. This was due to the vertigo I had for two months at the beginning of this odyssey. So at first I decided to spend time doing things I enjoyed like fly fishing, standup paddle boarding and prospecting (gold panning in the creek behind my house). I chose these activities purposely to get me outdoors and off the couch. So I upgraded some of my equipment, and for awhile this seemed to distract me from the reality of my situation. I wanted to research how to get better at these different outdoor activities. But, I was loosing my ability to focus or concentrate. And, as the disease progresses, you just don’t feel like doing anything. Now I just wanted to sit in my easy chair.
I realized I was falling into depression. It is okay and normal for this to happen. Who wouldn’t get depressed with this major negative change in my life? It changes your outlook in many areas, especially in regards to the future. Depression often enables other parts of your life to feed into it, like gaining weight from not being active or eating right because you don’t feel like doing the disciplined things anymore. It starts to snowball. I could see it happening but didn’t know what to do about it. It really bothered me.
THE BEGINNINGS OF HOPE
I think subconsciously I was basically just waiting to slip away and die, like the other 5.4 million with alzheimer’s eventually do. Then one day, a thought came to me from my past that evolved my thinking in a different direction. That thought has made a huge difference in my life. I realized I had lost having a purpose in my life. That might sound crazy, but it hit me hard!
A long time ago I used to work in the counseling profession and remembered that many times if I could help people see their situation from a different or better perspective, that it would change everything for them. Example: If you are lost in the desert, your throat is dry and parched, you can barely walk or even take another step… but then you look up and see an oasis, shade, water, food… do you fall over and die or do you jump up and try and run to the water? Or say you are on a deserted island and starving, on your last leg, about to give up… and you see a ship on the horizon or a plane fly over head! What happens to your energy? You get a boost!Everything changes.
The truth about our perspective is that you have a choice. Sometimes the truth about something is bigger than what you see at first. If you are stuck standing in a room that has a beautiful painting on one wall, but you are facing a wall that has a horrible picture, the direction you face will determine how much you enjoy standing in that room. The reality is that you are in the room, but you get to choose what direction you face and what your experience is while there.
I realized I was facing the wrong direction! I had been put in a room I couldn’t leave and was facing an ugly picture. It didn’t make me happy. But no one said I had to keep looking at it, I had a choice!
I used to help others quite effectively, by showing them a different perspective in their situation than what they were seeing. It worked for them and I decided it would work for me. So I asked myself: what perspective have I been accepting and what perspective could I choose to see?
I was accepting that there is nothing I or anyone can do, so I might as well do nothing. I didn’t really feel like doing anything, but that was because I accepted that perspective, and it did not energize me.
Then I looked at my situation to see what my other choices were… I knew I could choose to be happy. There are many ways to do that… listen to music that lifts you. Hang around people that make you laugh and smile. Read things that inspire you. I decided to ask myself; What has been the biggest thing that makes me truly happy? The answer for me was almost instantaneous. Helping others is what makes me happy. It was something that I discovered in my early adulthood and what led me to pursue the counseling profession.
Now if I had decided that fly fishing was the one thing that made me truly happy, then this blog would be about fly fishing! Can your ‘purpose’ be to fly fish? SURE! If that is what rings your bell. A few years ago there was a blockbuster movie called ‘Chariots of Fire’, you might remember it. It took me the longest time to think of the title… but in the movie, the main character was the runner who was a Christian and at some point in his life He realized that running was his purpose! Running… a purpose? He said when he ran, it made God smile. What is your gift? Your love? Your purpose?
All of a sudden I had a purpose! To help others. Wow! I could see the ship on the horizon! I’ve been jumping up and down ever since… waving “Over here, over here!”
Perspective and Purpose go hand in hand if you let them. But many people do not understand the power there is in this truth. The power for good, for joy, for happiness, and the beginning of hope.
I created a website for people like me who get a dementia diagnosis, help me find them.
This section of the website is labeled HOPE. It is the part focused on you. A person trying to find answers, having just found out something is wrong. The word dementia is now involved in your life. The HOPE I am referring to on the website is for you a little further down the road. Right now you might not yet know what you are dealing with and HOPE is not your primary focus. So this article is not so much about HOPE but about learning what is going on.
Part of the early process of all this is finding out a few things. If you just started, you have probably had some screening tests by a doctor, and he has said there are some cognitive issues and that you need to have more testing. The doctor will then send you out for different tests... blood work, an MRI, and a larger cognitive battery of tests. It usually takes some time to get all this going and completed. If you haven't already you are probably now dealing with a Neurologist. Most of what I am writing here is from my experience. Dementia affects people differently, and doctors approach it differently with different levels of experience, so your experiences may be different than mine.
Depending on how your various tests come back, especially the cognitive tests, you will probably initially be given the diagnosis of MCI (mild cognitive impairment) if you are under about 70-75 years old and definitely if you are under 65 years old. The reason for this is that Alzheimer's is not easy to diagnose. Dementia comes in many forms and from many causes. Alzheimer's itself has many forms and causes. Until the doctors can begin to understand YOUR particulars within all those variables they use some broad labels such as MCI or just Dementia. The more tests you can have, the more they can diagnose. Tests are expensive. Therefore the diagnosis is expensive.
I was fortunate that I worked for a company that offered Short-term and Long-term disability insurance. Side note, this is different than Long-term CARE insurance, which you need if it specifically covers Alzheimer's or Dementia care! Because I had signed up for the short term when I joined the company I was able to both receive back pay for time lost from work and not have a delay when it came for the Long-term insurance to kick in.
I wanted to know what is wrong with me bad enough that I pursued every avenue I could and still am. My symptom's and my test scores have changed over the last 18 months, and my diagnosis has changed from MCI to Alzheimer's, but there are some questions I still have about the more specific areas of my brain that are affected.
You need to start making notes about ALL THE SYMPTOMS you and those around you have noticed. For myself, it is not just misplacing the car keys. Anything neurological is important. For example, I have a symptom that comes and goes with my sense of smell. With no warning, I will smell what I call a 'chemical smell.' It is not pleasant, but not so bad that I can't stand it. It will come and go throughout a day or a week and then be gone for a month and back again. I also have an issue with my vision that comes and goes. My speech is sometimes difficult to either get the words out or sometimes to find the words I want to use. My ability to focus or concentrate goes up and down through the day. It may take me an hour to write a short email, or I might write a post like this fairly quickly. Other times I can't even read because my brain feels full, tired, and cluttered. These are just some examples, and I haven't even started to talk about my memory issues which are the main thing. I have also noticed my coordination has gotten worse along with my balance. Your neurologist needs all of this information because all these things originate in different areas of the brain.
If you have the diagnosis of MCI and you do nothing further, it will remain the same every year until your scores get so low that you are in a middle stage and the diagnosis is obvious. Early stage dementia is not so apparent. I had a non-memory related neurological issue causing my productivity at work to drastically decline over a six-month period that I didn't even realize it was something serious and a neurological symptom of dementia. My Fiance' is the one who felt my memory was bad enough to insist the doctor pursue it. I knew I was 'forgetful' but was not subjective enough to see what was happening. My point is YOU have to pursue your diagnosis. If you can still work at your job and your condition is not too much of a problem, then that is fine. I was very fortunate that my Fiance's insistence pushed us past my not being able to see how bad things were.
Things are different for people with early-onset and knowing this is important. Because only about 5% of the total number of individuals with Alzheimer's have early-onset, most of the attention is on the other 95%. I have gone through three different neurologists due to my need to know my diagnosis and due to some of their lacking expertise in this area. Now to become a neurologist is hard. You have to be smart! But that doesn't mean they know everything about Alzheimer's. It means you are similar to a family physician in that they have an excellent understanding of a lot of things, but you don't specialize in anything. You need to find a neurologist who specializes or has a ton of experience in early-onset dementia/Alzheimers. They are out there, but I have found many neurologist's experiences is only with middle/late stage dementia and late-onset, meaning much older people. It is a very different situation with early-onset. The symptoms are different, and the prognosis is different because with early-onset you don't know what the final diagnosis and symptoms will end up as. Some symptoms could change my diagnosis in a big way. I could end up with Parkinson's or Lewey Body or Frontotemporal Dementia. Some of the determining symptoms do not present for a year or so after the initial dementia diagnosis. Each of those types of dementia's has their own research groups, treatments, and prognosis including life expectancy. The most logical way to find a neurologist with the knowledge and experience you need is to find one involved with clinical trials. They will understand what needs to happen for a proper diagnosis AND know the different symptoms of similar types of dementia.
Postlude: Please click here and read the DISCLAIMER at the bottom of the About page.
Just a little over a year ago, I was first diagnosed with MCI (mild cognitive impairment). Over the next 6 months of meeting with various Neurologists and going through numerous tests like MRI's, Cognitive Batteries, PET scans and Lumbar Punctures, I was diagnosed with Alzheimer's. And since I was only 54 years old that designated my type as Early-onset.
If you are familiar with any of the above, then you are at the right place. Here you will find the things you are looking for. Answers, Information, Hope, and a way forward through the shock and trauma to finding life again. This is not some religious belief system or positive thinking manipulation. This is simple and what works. It works for me and will for you.
First just know this is real. This is hard. Getting diagnosed with a disease or condition that does not have a cure and has a definite short life expectancy, is not easy to cope with. You can be upset, you can grieve and give up, you can even walk in denial, but the hard truth is the hard truth. I am there too. I have walked through the shock, denial, and grief. I still visit all of them but less often and with less painful emotions... Because I'm busy living again. Time may be short, but I have lots to do and lots to give.
When you are ready... join me.