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Prayers sir.

Bless you all!

My old girlfriend passed away from it last year and it got most of her family as well. It is a horrible, horrible disease. Prayers for you and your family Rick. I can't imagine how tough it must be for ya'll.

Prayers going out for you and your family

Prayers for all involved. My oldest brothers son passed away from Cystic Fibrosis at 18. It’s excruciating to see ones child fight disease. The ups and downs often living at the hospital way too often. Your family can take solace knowing you did everything possible for her. That’s all you can do. Fate is always difficult to understand and reconcile.

Maybe down the road your wife creates a foundation to help fight the disease or becomes part of one? Often that helps knowing you have been part of something that may prevent others from going through something so difficult. Maybe it’s a scholarship fund to help someone in a medical career doing research.

Be there for each other through the trying times. Take it a day at a time always trying to find positives as much as possible.

Prayers up Rick. I wish I could do more.

Praying for you, your wife and Miranda. Thanks for the support of your wife and for taking the best care of your stepdaughter possible.

Prayers for your family and strength to endure.

Prayers up for Miranda , Tina and Rick - God, shower this family with Your grace, mercy and strength from now until the very end.
I ask this in Your Son's name - my Lord and Savior Jesus Christ. Amen.

Bless your wife, daughter, you and all those involved. What a terrible ordeal and it's heartbreaking just what you've shared here.


Y'all are all in our thoughts and prayers Rick

Thoughts and prayers.

It's one of those diseases you just don't grasp how bad it can be, until you witness it first hand. The loss of motor skills is bad enough. But when their minds start to go. It gets worse than one can imagine. She's on the strongest psych meds available. They barely phase her.
I don't even think I could sensibly explain what this last month has been like. One day it was just business as usual around here. Then the switch was flipped. Yesterday evening she was sundowning bad. She will just scream out for hours. Probably a good thing our closest neighbors are an acre or two away. They would probably think we were torturing her with all her screaming. There is no comforting her when she is like that either. We think she doesn't recognize us at times.
I'm the lucky one in the scenario. I get to escape to work every day. Tina is stuck her practically 24/7. We do have a nurse that takes care of both Rue and Miranda. She comes while I'm at work. She's been with us for 3 years. So about once a month I take the day off, and get Tina out of the house on a day date.
Side note on our nurse. She has a family history of Huntington's also. She's been tested and some day will be in similar shoes as Miranda. I don't think I could do it myself. I couldn't go and see my terrible future on a daily basis. But God bless Stephanie. She does it. Fortunately she was off when Miranda got really bad a couple weeks ago. Ironically she was at a study for Huntington's in Wisconsin at the time.

She's been offered jobs in counseling families. She has turned them down for now. Too much on her plate with both Miranda and Rue. Rue has her own serious medical issues.
I have suggested a few times that she write a book for caretakers.