Hello, and thank you for your wonderful, insightful discussion. You have said so well what I was attempting to convey to @jthomas458.

My son is now, finally, getting the help he's needed all these years. I think the pump should have been an option long before the last couple years. He wasn't diagnosed for over 5 years, as dystonia wasn't sexy yet and there weren't many, none in our area, movement disorder physicians who knew much about helping someone in his situation. He was a very active 35 year old attorney, his own practice, struck down and in horrid pain since that time. He had nothing to help other than opioids in high doses that dulled the pain, didn't address it well and certainly dulled him mentally. He could watch tv. Couldn't use the computer, or read or walk or swim or do any exercise at all. Had impossible nightmares and sleepless, painful nights for years.

Only with a doctor I found and botox injections did he get some true relief and regain some symblance of life. This has been a 20 year nightmare for this man. Lost years. Life gone.

But, he now sees a wonderful neurologist at Mayo who specializes in dystonia and gives him botox injections. He is working with a mental health clinic via zoom currently due to covid to address many of the issues you mentioned. It has been tough getting the mental health help, but now he's on his way in that area. He has a consultation soon with a specialist and will get ongoing chronic pain, PTSD, behavioral therapies and I believe will begin to have a manageable life, with much better controlled pain and with a growing ability to live effectively with his ongoing symptoms.

There will be no cure. There is no solution or resolution for him. We have been fighting constantly to get what help is available, the knowledge to help him have some kind of future. Truthfully, he's my hero. I'm amazed he and folks like you are able to survive and continue this struggle for survival. Amazing. I honor him and will forever.

I have constant pain, and many serious ongoing health issues but nothing like what he's been dealing with for so long. My losses are nothing compared to his. I'm so thankful for him to now be at this place with the dilaudid pump and botox and mentall health help and the other meds to get him to a better place.

As a mother, I pray he will receive the help to live as good a life as possible after I've left this earth. God is helping, healing and blessing him and me at this time for which I'm immensely thankful.
May you be blessed with healing and less pain as you meet each day.
elizabeth

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