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.
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