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Pure Autonomic Failure


Mary T

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My mom was recently seen by Dr. Grubb (who was incredible!) and although he is not certain what she has exactly he is leaning toward Pure Autonomic Failure.

I'm a mess. So is she. So is my dad. Can someone give me some advice about how to cope? My dad thinks she needs to be pushed and expects her to still cook and do that stuff....She is so chronically fatigued and sad. He says we (her daughters) "spoil" her. Duh.....I'm looking for any support I can get.....No one seems to understand her situation because she doesn't look "sick" ...at least to anyone else. I think she looks terrible - lost weight, fatigued, no balance, weak, etc, etc, etc. I live out of town on top of everything.

There's something wrong with her eyes too, and my dad took her to a doc who said her eyes were fine but I subsequently discovered she has macular degeneration and he didn't tell her "because it wasn't that bad". That was fine with my dad! I think she needs another evaluation - she is having trouble seeing!

I'm so frustrated! Can anyone help?

Thanks

Mary

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Dear Mary,

I'm sorry to hear about your mom. That must be so hard for you to watch her physical decline.

I'm glad you were able to see Dr. Grubb. From everything I've heard he is a wonderful doctor. Did he order any further testing for your mom so that she can get a definitive diagnosis? I hope that she can get a diagnosis and some good treatment soon. It will help just to know for sure what is going on.

As for how to cope - it is hard. You grieve. You mourn what you have lost and can't regain. Then eventually you learn to cope, to move on, and to make the best of life as it is. Life is hard, isn't it? I wish you, your mom, and your family didn't have to go through this.

I'll be praying for you, Mary. I know I'm just "a name on a screen", but if there is anything I can do to help you, let me know. Feel free to send me a pm if you need someone to talk to.

Hugs,

Rachel

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It sounds like your mom does not have a definitive diagnosis yet (whether she actually does have PAF--which is far less common than POTS). Hope she can get answers soon.

There is always an adjustment time (and many readjustments) in managing the physical symptoms and the emotional strain of serious chronic illness. There are some helpful books out there... Personally, I have found the authors Jon Kabat Zinn and Pema Chodren helpful. Counselling might really help your family too. There are counselors who have expertise in chronic illness.

Let us know how she is doing.

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Hi Mary,

I should also mention that, personally, I find great hope, comfort, and peace through my faith and in reading the Bible. It is because of all of that that I am able to cope with life with a chronic illness. I also found the book, "When God Weeps" to be very beneficial. It is written by Joni Eareckson Tada, a quadrapalegic, so she understands what it is like to suffer. If you want to read her story she also wrote an autobiography called, "Joni". It's a relatively short book and is an easy read.

I'm still thinking of you and praying for you. Keep us updated when you can about how you, your mom, and your family are doing.

Rachel

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Sometimes the people we love deal with it by believing it is not there. Your Dad may be having a hard time coping and the only way he knows how to cope is to think that it is just "something that needs to be pushed through". Give him time to understand.

Just be there to love them both.

Mary

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Is it possible since she's already established with Dr. Grubb that he could do the testing on her mom? Or, does it need to be a neurologist to do the testing?

He's actually sending her to a neurologist at the University to rule out Parkinsons'....we just got the call yesterday. But we've been told Grub doesn't have a lab, so he'll just be watching the progression of symptoms.

Mary

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