The news was not good. It was actually what we at one time said was our worst fear. To sum it up as best I can, the doctor detected significant shrinkage in her parietal lobe. This is a syndrome which is called Posterior Cortical Atrophy (PCA). This syndrome is most typically caused by Alzheimer's but can also be linked to our original diagnosis of Lewy Body Dementia. There is a new test that has only been out about a year and it is only done in Dallas and Houston. This test uses a radioactive dye to show the doctor if there is protein on the brain, where and how much. The test would be fully covered by insurance if it was for cancer purposes, but since we are dealing with Alzheimer's the test is not covered at all. We decided we would like to go ahead and have the test for a very simple reason. The test will let us know if we are dealing with Alzheimer's, which can be slowed (not stopped) some with medicines. Otherwise there is no treatment that we can really do.
The course of PCA is not a good one. Basically the brain is unable to process information. So she would eventually function like a blind person not because her eyesight is bad but because she is no longer able to process what she is seeing. For example, she might be looking at something right in front of her like a glass of milk, but is unable to find the glass of milk because her brain cannot process that it IS a glass of milk. Confused? It's still very confusing to me too, so don't worry. It's a grim prognosis and one that there is very little research about. Here is one thing I do know ... and had confirmed multiple times today, early onset dementia is actually nothing like regular alzheimer's and dementia associated with older people. While there may be similarities...having this disease onset in the early 50-60's range is quite different. We are dealing with a monster of a disease that very little is known about. However, unlike alzheimer's in the elderly, my mother will be completely aware of all that she cannot do at this time. She will be aware of all that she is losing. She will be aware of all that she struggles with. There are so many other differences that I will go into later because I think it needs to be said.
One thing the doctor did talk with her about is important enough to mention here. She wanted to talk to him because SO MANY people say to her that she looks fine. They tell her that they have the same problems as she has and so she wondered if maybe everyone is making too much of this. (I could and DO tell most of the lovely, well-meaning people who say this to me that you are welcome to spend more than five minutes with us and I guarantee you you will notice the changes.) The doctor was adamant that one of the things about this disease is that is a silent. She does not lose her hair like when battling chemo. She does not lose a limb like when battling a clot. She loses her mind, which NO ONE can see. There will be plenty of MOMENTS that she will seem totally normal. However, he stressed to us how harmful continuing to tell her she looks good can be. That's not to say you should tell her she looks awful. But perhaps just don't try to offer your own diagnosis of her condition. What we are battling is VERY real and when people say things like this they are unknowingly diminishing that in her mind. Her understanding how real this battle is, is VERY important.
As a family, we don't know how we feel. Defeated is a word that comes to mind. This is hard to face on so many levels. As we were leaving, the doctor asked me if I had any questions. I talked to him about how quickly she has gotten worse over the past few months. He hugged me tight and said I wish I could tell you it will get better, but I can't. It will only get worse. (It's a good thing I really like him.)
We are also determined. Dad, my brother and I sat down tonight and talked through some things. We made some plans and just processed a little bit together. We are going to fight this as a family. We are going to be there for each other and do whatever it takes to support mom. That much we know.
The test will be next Thursday in Dallas. The doctor will have the results the next day and we will go from there. The crazy thing about all this is that it feels so hopeless. There's really not a lot of fighting we can do ...
When I was putting the boy to sleep tonight. We were listening to some PraiseBaby (apparently my child is addicted to that stuff). The song Forever Reign came on. I played it on repeat for about 6 times. I NEEDED the words. That's what I'm leaving you with tonight.
Forever Reign
Hillsong
You are good, you are good
When there's nothing good in me
You are love, you are love
On display for all to see
You are light, You are light
When the darkness closes in
You are hope, You are hope
You have covered all my sin
You are peace, you are peace
When my fear is crippling
You are true, You are true
Even in my wandering
You are joy, you are joy
You're the reason that I sing
You are life, You are life
In you death has lots its sting
Oh I'm running to Your arms
I'm running to Your arms
The riches of Your love
Will always be enough
Nothing compares to Your embrace
Light of the world forever reign
You are more, You are more
Than my words will ever say
You are Lord, You are Lord
All creation will proclaim
You are here, You are here
In Your presence I'm made whole
You are God, You are God
Of all else I'm letting go
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