Why I do not review more
Living with Huntington Disease46 total reviews
Comment from JanPerry
I'm sorry you live with all these problems though U seem to handle him well. I've never been with a disabled person and can sympathize with your plight.
All I can say is, I hope U get to visit your normal friends and enjoy time for yourself. Constant caring is exhausting for U and him too.
reply by the author on 29-Jan-2024
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I'm sorry you live with all these problems though U seem to handle him well. I've never been with a disabled person and can sympathize with your plight.
All I can say is, I hope U get to visit your normal friends and enjoy time for yourself. Constant caring is exhausting for U and him too.
Comment Written 27-Jan-2024
reply by the author on 29-Jan-2024
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Thank you for responding to my post. I truly appreciate your advice.
Best wishes,
Mary
Comment from prettybluebirds
My heart goes out to you. I watched a brother-in-law die of the disease you mentioned. It is heartbreaking to watch someone you care about turn into a helpless individual. I can understand why you have little time to review. Being a caregiver is a full-time job.
reply by the author on 29-Jan-2024
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My heart goes out to you. I watched a brother-in-law die of the disease you mentioned. It is heartbreaking to watch someone you care about turn into a helpless individual. I can understand why you have little time to review. Being a caregiver is a full-time job.
Comment Written 27-Jan-2024
reply by the author on 29-Jan-2024
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Thank you for your understanding and review. I appreciate it.
Best wishes,
Mary
Comment from Begin Again
I'm so very sorry to learn of this struggle you and your husband are facing. Being a caregiver must earn each of us a spot in heaven or at least less stairs to climb. (bad knees) I've walked in similar shoes and it's not a easy path, especially when we see the one we love slipping away and we can't stop it. I'm told the Lord doesn't give us more than we can do, but forgive me, there are times when only for a moment we have our doubts. You have the hearts and prayers of many Fanstorians including mine.
Hugs, Carol
reply by the author on 28-Jan-2024
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I'm so very sorry to learn of this struggle you and your husband are facing. Being a caregiver must earn each of us a spot in heaven or at least less stairs to climb. (bad knees) I've walked in similar shoes and it's not a easy path, especially when we see the one we love slipping away and we can't stop it. I'm told the Lord doesn't give us more than we can do, but forgive me, there are times when only for a moment we have our doubts. You have the hearts and prayers of many Fanstorians including mine.
Hugs, Carol
Comment Written 27-Jan-2024
reply by the author on 28-Jan-2024
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I truly appreciate your kindness and understanding, Carol. I got a break this weekend where except for a couple of minor events, it has been a quiet two days.
Mary
Comment from Sandra Stoner-Mitchell
Mary, I am so sorry you are going through this. As much as everyone sympathises with the one with the illness, the carer goes through just as much if not more. As his wife, you know the man he was, the man with whom you did so much together. Now it's as if you are both walking seperate roads, that will eventually take you to different places. It's so easy to say, 'stay strong' but so hard to do. I hope you have help. I did when I went through something similar with my late husband 40 years ago. You can't do this alone. Prayer and hugs coming to you from over the pond. Sandra xx
reply by the author on 28-Jan-2024
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Mary, I am so sorry you are going through this. As much as everyone sympathises with the one with the illness, the carer goes through just as much if not more. As his wife, you know the man he was, the man with whom you did so much together. Now it's as if you are both walking seperate roads, that will eventually take you to different places. It's so easy to say, 'stay strong' but so hard to do. I hope you have help. I did when I went through something similar with my late husband 40 years ago. You can't do this alone. Prayer and hugs coming to you from over the pond. Sandra xx
Comment Written 27-Jan-2024
reply by the author on 28-Jan-2024
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Thank you, Sandra, for your understanding, prayers, and comforting thoughts.
I appreciate it. I am on a roller coaster now, and he has good days, except for being unable to follow directions, and bad days when he seems in a panic. I know more bad days are down the road.
Mary
Luckily, these past two days have been good.
Comment from Ginda Simpson
My husband has PSP, so I feel your pain. I can relate to every word you have written. Writing is where I find release. Don't worry about reviewing. Just write what's in your heart. Sending hugs and blessings.
reply by the author on 28-Jan-2024
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My husband has PSP, so I feel your pain. I can relate to every word you have written. Writing is where I find release. Don't worry about reviewing. Just write what's in your heart. Sending hugs and blessings.
Comment Written 27-Jan-2024
reply by the author on 28-Jan-2024
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Thank you, Ginda, I appreciate your very kind words and advice.
I appreciate the six stars.
Blessings,
Mary
Comment from Wayne Fowler
Oh my goodness. Bless your heart.
And sleep deprivation intensifies everything.
It's such a shame when lover/partner/friend becomes care-giver/nursemaid/warden.
reply by the author on 28-Jan-2024
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Oh my goodness. Bless your heart.
And sleep deprivation intensifies everything.
It's such a shame when lover/partner/friend becomes care-giver/nursemaid/warden.
Comment Written 27-Jan-2024
reply by the author on 28-Jan-2024
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Thank you Wayne, I appreciate your thoughts and review. Your right in that the lack of a good night's sleep for days was overwhelming me.
Luckily, last night I got a normal night's sleep.
Mary
Comment from Pearl Edwards
I am so sorry to read this Mary. It is very hard to care for someone when you remember the person they were. It's good that you have shared how Huntintons disease affects you as well as your husband. Take care.
reply by the author on 28-Jan-2024
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I am so sorry to read this Mary. It is very hard to care for someone when you remember the person they were. It's good that you have shared how Huntintons disease affects you as well as your husband. Take care.
Comment Written 27-Jan-2024
reply by the author on 28-Jan-2024
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Thank you Pearl, I appreciate your kind thoughts.
Best wishes
Mary
Comment from T B Botts
Hello Mary,
I wish I had a six to give you. As you can clearly see, you have a lot of support from your family at Fan Story. We all feel so badly that you have to deal with the loss that you're feeling and the overwhelming issue of having to take care of someone you love dearly. I'll be praying for wisdom and strength for you gal. The word says that God won't give us more than we can handle, though at times I wonder if I misunderstood. God bless and keep you Mary, and your husband.
Tom
reply by the author on 27-Jan-2024
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Hello Mary,
I wish I had a six to give you. As you can clearly see, you have a lot of support from your family at Fan Story. We all feel so badly that you have to deal with the loss that you're feeling and the overwhelming issue of having to take care of someone you love dearly. I'll be praying for wisdom and strength for you gal. The word says that God won't give us more than we can handle, though at times I wonder if I misunderstood. God bless and keep you Mary, and your husband.
Tom
Comment Written 27-Jan-2024
reply by the author on 27-Jan-2024
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Tom, I appreciate and feel comforted by your warm and caring words.
Thank you for your prayers.
God bless you.
Mary
Comment from Wendy G
Oh Mary, I am so sorry to read this. What a strain for you, and how hard to realise and cope with these changes in his life. I was caring for a friend who had a similar brain disease and it was an emotional roller-coaster as she became more and more irrational. I do hope you have some outside support to give you emotional strength and support.You'll be in my prayers.
Wendy
reply by the author on 28-Jan-2024
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Oh Mary, I am so sorry to read this. What a strain for you, and how hard to realise and cope with these changes in his life. I was caring for a friend who had a similar brain disease and it was an emotional roller-coaster as she became more and more irrational. I do hope you have some outside support to give you emotional strength and support.You'll be in my prayers.
Wendy
Comment Written 27-Jan-2024
reply by the author on 28-Jan-2024
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Wendy, you describe it perfectly as a roller coaster. He has been good the last couple of day, but he cannot follow directions. I realize that he is no longer a helper
But I will take doing everything myself for more good days.
Thank you for your prayers.
I appreciate it.
Mary
Comment from Debbie D'Arcy
I know you reviewed me and I really appreciate that given these concerns and disturbance you have from your dear husband. Your very clear text seems to emphasize the extent of your exhaustion, as though you just need to make it crystal clear amid the confusion that prevails during your day. I'm so sorry because this must be so wearying and sad for you as you see your husband change before your very eyes. These neurological conditions are very cruel and you should never feel the need to apologize but simply enjoy those moments of tranquility when you can, without concern for anything else. Take care, Mary. Debbie
reply by the author on 27-Jan-2024
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I know you reviewed me and I really appreciate that given these concerns and disturbance you have from your dear husband. Your very clear text seems to emphasize the extent of your exhaustion, as though you just need to make it crystal clear amid the confusion that prevails during your day. I'm so sorry because this must be so wearying and sad for you as you see your husband change before your very eyes. These neurological conditions are very cruel and you should never feel the need to apologize but simply enjoy those moments of tranquility when you can, without concern for anything else. Take care, Mary. Debbie
Comment Written 26-Jan-2024
reply by the author on 27-Jan-2024
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Thank you Debbie for your kind words. I appreciate it.
Best wishes
Mary
