Well, hello, fiesty 76. It's wonderful reading you message. I've been out of the loop, off-line, out of kilter, elsewhere, fighting alligators as we say and do in sunny Florida.....the last several days. I found my son on the kitchen floor several afternoons ago after finishing appts at Mayo. He was unconscious, couldn't rouse him so called 911, took to Mayo Hospital. He was there in ED for a day, in hospital couple days. Home on Thursday. He had an episode in the car with me getting his meds, so I just drove him to Mayo hospital ED.
I brought him home last night. He's not ok, but with God's help will be soon.

He'll have home health care soon....nurse, PT, OT, and I'm hiring a housekeeper for a couple days weekly at first to help. He's willing to have the medical help now, will be seeing the movement disorder specialist neurologist this week which will begin the help he desperately needs....address the whole person finally! He'll have people in his life for the first time in 19 years!

Dystonia is a horrid illness. It's taken away his life...19 years fully disabled, unable to sit at or type on a computer, everything hurts....serious muscle pain with every muscle contracting all the time!!! Never relaxes...and a ne in nerve firing 24/7 in his shoulder/neck, constant nerve pain and loss of use of his arm w/o screaming pain. He's reached his limit every way, physically and emotionally. He's completely exhausted. But, now he gets some help!!!!

He was an immigration lawyer, good and caring, and hit with this mess as his life was going well, thriving. His life has been taken away.
Now, finally, we have a doc who knows what is happening and hopefully knows what to do. There are now treatments, even to brain surgery, and knowledge which is fairly new about dystonia. He simply needs, has to have now, proper care and treatment.

I'm tired. This has been a long journey down this road of life. I am a mama grizzly bear and I've been fighting fir my cub! I haven't been able to help him like I wanted, just support him and love him and be there. Now, there are people who can help.

To catch up re my health, it's been on hold obviously. I begin this Friday with pelvic dysfunctionality testing....GOODIE! Then digestive and esophogeal tests to get me back to that warm pool and some walks. I did walk in the hospital for my good but also as a relief from the drama and emotions. I

'm working now on focusing on my emotional health, some music, some meditation, some peace. Although, I'm on the way now to Rob's condo, across the street, just to chat. He wants to talk about what the docs said and have lined up. I want to rest! BUT, friends, when do mother's rest? He's 53 year old....a kind, lovely person who is totally alone but for me, his mother. That's pitiful...poor fellow.

My wonderful new bed will be delivered, installed and the old mattress and 2 box springs removed....white glove service as Macy's calls it.....please be the comfy bed I think it is!!!!!!! Also hope I made the right decision to get box springs rather than the metal adjustable frame. May have to rethink that in the next 24 hours!

Going to see my boy. Blessings to all of you and your personal journeys. Btw; one thing we're chatting about today....DNR, decisions, living will, health care power of atty....all things we've discussed but never completed. You and this discussion have pushed me on.
Thank you for that and so much more. elizabeth

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