Amanda (bttrflywriter) wrote,

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My aunt Oma has ALS. We've known for a few years that she had something going on, but the doctors didn't know what it was because of the way the disease came on. But as of almost a year ago, they knew for certain that she has sudden onset ALS. I'm going to see my aunt for the first time since her diagnosis this weekend. I truly don't know what to expect.

I admit I didn't know much about this disease before her diagnosis. I had heard of Stephen Hawking, of course, and knew he has ALS and has had it since the 70's, but that didn't really give me much to go on. The summary of the disease is thus: something in the brain suddenly stops the muscles from receiving nutrients, therefore causing the muscles in the body to atrophy. Your mind stays fine so you are perfectly aware of what's happening while your body wastes away and gradually stops working as you attempt to go about your somewhat normal life. The life expectancy after diagnosis is on average three to five years. Five years of life until the disease has ravaged your body to the point of death. Think about that. Five years. That passes in the blink of an eye. I have learned that Stephen Hawking is the rare exception and not the norm. ALS is a death sentence.

Unfortunately for my aunt, she had had symptoms for about two years before she was diagnosed. Not that an earlier diagnosis would have changed anything, except to give her more time to adapt to the knowledge that her life would end before she saw her late 50's. The onset of her ALS was unusual; attacking only one limb instead of a lateral onset. She had a few symptoms but not enough to make it a concrete idea in her specialists mind – until the day came when she suddenly lost mobility in her other hand. It started in the fingers; pinky, ring, middle, index to thumb. Then it moved up her arm until all she could do was shrug. Soon, she couldn't even do that. She's now declining rapidly. I saw a video of her tonight and was surprised to see she's already in a wheelchair. I don't know when that happened. It was expected by the end of the year, but not by the end of summer. Things are moving quickly and it's out of our control to slow it down.

I hate feeling helpless. There's absolutely nothing I can do. There's nothing my aunt can do for herself except prepare for her inevitable death. Nothing will stop this, nor slow this down. There are no treatments. There is one medication on the market. ONE. It may extend life by a few months, it doesn't really treat the disease but treats the symptoms and it's so expensive that insurance companies often won't pay for it – and for those that do, it's still over $2,500 each month for the patient. The only thing she could do was quit her job (after working for so long – and falling at work – that she was forced to quit because she had become a liability to her company), go on disability (which they push through the system if you have ALS... yay?) and now she's spending as much time with her loved ones as possible while my uncle balances taking so much time off work and actually keeping his job.

It's so hard for my mom. My aunt and my mom have the stereotypical sister relationship that everyone wishes for; they are so close and do so many things together. They keep each other sane. My mom is a nurse; it's her calling to take care of people and make them better. She's proactive to a fault and to see her struggle to accept the fact that there's nothing she can do to fix this is terrible. My mom is the ADON of a nursing home; for that very reason, my aunt is planning to live out the rest of her life there once she is bed-ridden, so she can at least be with her sister a little bit each day. My mom is going to be my aunts main caregiver until she dies. I don't know what's going to happen to Mom then. She's going to be lost and I don't live close enough to be there as much as she's going to need me (not that she would admit she needs anyone). I suspect she feels the same way as I feel when envisioning the prospect of losing Mom or Dad.

For everyone who has done the ALS ice bucket challenge this summer, I thank you. My aunt won't see a penny of it, but if it can fund the research needed to make a medication that works or to discover some sort of a treatment that ALS patients can have in the future, it's worth it.

Tags: family, words of woe

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