Why I do not review more
Living with Huntington Disease47 total reviews
Comment from Debi Pick Marquette
Mary, I have been saving this six for someone who can show me an end of the week wonder post and that one is you, dear friend.
Wow, I am so sorry for what you are going through, but so happy that you shared it with your good friends here. After all we are a family here and you have always been special to me. I can't review much either but it is more about my health and not my husbands.
You are such a remarkable woman and I bet when he isn't having these episodes he is his old self again, or at least I hope he is. You are such a lovely woman and I hope it helps to know that so many here love you so much.
Just know that I am praying for you. And I hope you know I am sure many are for you and your husband.
Are you very far away from Boston, as I don't know if I ever told you that my dad's ship from WWll is docked at the Charleston Naval yard next to the
USS Constitution. So I have been there three times now and I love your state.
Would love to come back again and see some of my friends from FanStory too as there are a few of you who live there.
Anyways, thanks again dear friend for this wonderful read and prayers will continue for both. Love, Debi
reply by the author on 29-Jun-2024
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Mary, I have been saving this six for someone who can show me an end of the week wonder post and that one is you, dear friend.
Wow, I am so sorry for what you are going through, but so happy that you shared it with your good friends here. After all we are a family here and you have always been special to me. I can't review much either but it is more about my health and not my husbands.
You are such a remarkable woman and I bet when he isn't having these episodes he is his old self again, or at least I hope he is. You are such a lovely woman and I hope it helps to know that so many here love you so much.
Just know that I am praying for you. And I hope you know I am sure many are for you and your husband.
Are you very far away from Boston, as I don't know if I ever told you that my dad's ship from WWll is docked at the Charleston Naval yard next to the
USS Constitution. So I have been there three times now and I love your state.
Would love to come back again and see some of my friends from FanStory too as there are a few of you who live there.
Anyways, thanks again dear friend for this wonderful read and prayers will continue for both. Love, Debi
Comment Written 28-Jun-2024
reply by the author on 29-Jun-2024
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Thank you Debi for the kind words and review. I appreciate it. I am South of Boston about 16 miles from downtown Boston.
I appreciate your thoughts and prayers.
Mary
Comment from Ulla
I am so sorry you're going through such a hard time. It must be hard at the best of the time, but also to see your husband deteriorate like this. I totally understand. Again, I'm so sorry. Ulla xcx
reply by the author on 01-Feb-2024
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I am so sorry you're going through such a hard time. It must be hard at the best of the time, but also to see your husband deteriorate like this. I totally understand. Again, I'm so sorry. Ulla xcx
Comment Written 29-Jan-2024
reply by the author on 01-Feb-2024
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Thank you for your understanding and kindness. It is appreciated.
My very best regards.
Mary
Comment from Karen Cherry Threadgill
I am so sorry that you live in that life right now. His illness is your life. I hope you have some help, even if it is only for a little while. I will send blessings, prayers and best wishes to you. Karen
reply by the author on 01-Feb-2024
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I am so sorry that you live in that life right now. His illness is your life. I hope you have some help, even if it is only for a little while. I will send blessings, prayers and best wishes to you. Karen
Comment Written 29-Jan-2024
reply by the author on 01-Feb-2024
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Thank you Karen, I appreciate your kindness and prayers.
Best wishes,
Mary
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many blessings coming your way. NNR (no need to reply)
Karen
Comment from Liz O'Neill
"He is fixated lately on cable news" I'm not fixated on the news cuz I do not watch the news but I'm fixated on certain television shows. I have to use discipline to turn the television off and know I can get back to the show because it's taped (ooof dating myself here bwaaa) I'm sending you healing on all levels & courage. And any lessening of symptoms that can occur.
reply by the author on 01-Feb-2024
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"He is fixated lately on cable news" I'm not fixated on the news cuz I do not watch the news but I'm fixated on certain television shows. I have to use discipline to turn the television off and know I can get back to the show because it's taped (ooof dating myself here bwaaa) I'm sending you healing on all levels & courage. And any lessening of symptoms that can occur.
Comment Written 29-Jan-2024
reply by the author on 01-Feb-2024
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Thank you Liz, I appreciate your kindness. I can only pray that he has more time and the most severe symptoms are far off.
Best wishes,
Mary
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Continuing to send healing...hugs
Comment from Julie Helms
What a cruel disease, affecting the body, thinking, and emotions. As I care for a mother with Alzheimer's, who is physically fine, I can't even imagine the extra stress and emotional distress you are put under. Life can be so cruel, but it does lead us to appreciate the blessings we have more. My prayers are with you. Julie
reply by the author on 01-Feb-2024
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What a cruel disease, affecting the body, thinking, and emotions. As I care for a mother with Alzheimer's, who is physically fine, I can't even imagine the extra stress and emotional distress you are put under. Life can be so cruel, but it does lead us to appreciate the blessings we have more. My prayers are with you. Julie
Comment Written 29-Jan-2024
reply by the author on 01-Feb-2024
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Thank you Julie, I am sorry for your own difficulty with your mom. You have my own prayers.
Thank you for your prayers, it is appreciated.
Best wishes,
Mary
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Thank you, Mary!
Comment from Sanku
It is a terrible disease and I am sorry you have to deal with it.But of course he needs you more now and it is understandable that you dont have time to review.. my prayers are with you..
reply by the author on 01-Feb-2024
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It is a terrible disease and I am sorry you have to deal with it.But of course he needs you more now and it is understandable that you dont have time to review.. my prayers are with you..
Comment Written 28-Jan-2024
reply by the author on 01-Feb-2024
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Thank you Sanku, I appreciate your kindness and review.
My very best wishes,
Mary
Comment from Carol Hillebrenner
I am so sorry for you. A good friend lost his wife and both his sons within the last five years to Huntington's and a teen grandson is already showing early signs of the disease. You must feel overwhelmed nearly every hour of every day. You will be in my prayers. My friend lived in the same room as his wife in a nursing home as they tried several drugs on her. I am not sure any treatment did much except prolong her life. His sons wouldn't do many drugs because of what they saw had happened to their mother. If I can help you with any information I received from Rich, let me know. I do not know what drugs they used on any of them, so I can't help you there.
reply by the author on 31-Jan-2024
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I am so sorry for you. A good friend lost his wife and both his sons within the last five years to Huntington's and a teen grandson is already showing early signs of the disease. You must feel overwhelmed nearly every hour of every day. You will be in my prayers. My friend lived in the same room as his wife in a nursing home as they tried several drugs on her. I am not sure any treatment did much except prolong her life. His sons wouldn't do many drugs because of what they saw had happened to their mother. If I can help you with any information I received from Rich, let me know. I do not know what drugs they used on any of them, so I can't help you there.
Comment Written 28-Jan-2024
reply by the author on 31-Jan-2024
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The drugs do not sound encouraging. He has an appointment next month with a new neurologist who specializes in Huntington's.
Thank you for your review and offer.
I appreciate it
Mary
Comment from Carol Clark2
These symptoms remind me of my dad, who had Alzheimer's and passed away a number of years ago. So sorry you are struggling. You might want to consider a bit of respite care so you can get some rest. It won't be helpful if your own health declines. Adding you both to my prayer. Blessings. Carol
reply by the author on 31-Jan-2024
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These symptoms remind me of my dad, who had Alzheimer's and passed away a number of years ago. So sorry you are struggling. You might want to consider a bit of respite care so you can get some rest. It won't be helpful if your own health declines. Adding you both to my prayer. Blessings. Carol
Comment Written 27-Jan-2024
reply by the author on 31-Jan-2024
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Thank you Carol, I appreciate your advice and most of all your prayers.
Blessings,
Mary
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You're welcome, Mary. Have a blessed week. Carol
Comment from Ric Myworld
I'm so sorry, Mary, that you and your husband are having to deal with Huntington's disease. My best friend's father had it, and of course, he and his sister had a 50% chance of having it. His sister did, and my friend didn't, but the disease was a trying time for all of them. I don't know how much this old sinners thoughts and prayers will help but I'll certainly say a few for you both.
reply by the author on 31-Jan-2024
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I'm so sorry, Mary, that you and your husband are having to deal with Huntington's disease. My best friend's father had it, and of course, he and his sister had a 50% chance of having it. His sister did, and my friend didn't, but the disease was a trying time for all of them. I don't know how much this old sinners thoughts and prayers will help but I'll certainly say a few for you both.
Comment Written 27-Jan-2024
reply by the author on 31-Jan-2024
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Thank you Ric for your thoughts and prayers. I appreciate it. My computer has for some strange reason would not let me sign on to Fanstory. I found a backdoor today.
sorry I did not respond sooner.
Best wishes
Mary
Comment from jenintorre
Hi Mary
It certainly is not surprising that you don't have time to review.
I found your story so interesting and well written. You are so brave having to deal with this situation but of course you have no choice. My heart goes out to you. Love Jen.
reply by the author on 30-Jan-2024
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Hi Mary
It certainly is not surprising that you don't have time to review.
I found your story so interesting and well written. You are so brave having to deal with this situation but of course you have no choice. My heart goes out to you. Love Jen.
Comment Written 27-Jan-2024
reply by the author on 30-Jan-2024
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Thank you Jen, for your kindness and review. Thank you for the six stars
Best wishes
Mary