Why I do not review more
Living with Huntington Disease47 total reviews
Comment from Pam Lonsdale
Mary, I'm so sorry to hear of your struggles with Huntington Disease; these things don't just happen to the one with the disease, it happens to everyone around them, especially the caregiver. I've known spouses whose significant other has Alzheimer's, and as the main caregiver, their life is no longer their own. These diseases are all-consuming for everyone in the household.
Don't worry about reviewing - everyone here understands. I applaud you for even trying to stay in touch with your friends here. Or perhaps it is a diversion for you.
Thank you for letting us know so that we can keep you in our prayers.
Take care - I wish the best for you.
xo
Pam
reply by the author on 26-Jan-2024
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Mary, I'm so sorry to hear of your struggles with Huntington Disease; these things don't just happen to the one with the disease, it happens to everyone around them, especially the caregiver. I've known spouses whose significant other has Alzheimer's, and as the main caregiver, their life is no longer their own. These diseases are all-consuming for everyone in the household.
Don't worry about reviewing - everyone here understands. I applaud you for even trying to stay in touch with your friends here. Or perhaps it is a diversion for you.
Thank you for letting us know so that we can keep you in our prayers.
Take care - I wish the best for you.
xo
Pam
Comment Written 26-Jan-2024
reply by the author on 26-Jan-2024
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Thank you, Pam, for your kindness. I really appreciate it on a day that has been challenging with a 4 AM "wake-up" call. Thank you for your prayers.
Mary
Comment from Lisasview
Early morning here dear Mary and I just reading your writing ...and I can not stop crying.
My heart goes out to you.
It sounds like you are super patient with him... as he used to be with you.
One thing that may be useful is to put a couple of large signs near the computer with your password in bold red letters. I say a couple because he may not see one of them.. Tape one to the edge of your computer.
From what i gather he is able to use the computer..so that is a good sign.
As far as spills.. well..that is now your new job..
Put tape on the light switches so he can not put on the porch lights.
Only have one TV that works and put a recliner infant of it so he falls asleep there... He is probably on a different sleep pattern than you.
Scream into a pillow... that will help release your tears and at the end you will feel better...
Please let me know how you are doing..
Lisasview
reply by the author on 26-Jan-2024
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Early morning here dear Mary and I just reading your writing ...and I can not stop crying.
My heart goes out to you.
It sounds like you are super patient with him... as he used to be with you.
One thing that may be useful is to put a couple of large signs near the computer with your password in bold red letters. I say a couple because he may not see one of them.. Tape one to the edge of your computer.
From what i gather he is able to use the computer..so that is a good sign.
As far as spills.. well..that is now your new job..
Put tape on the light switches so he can not put on the porch lights.
Only have one TV that works and put a recliner infant of it so he falls asleep there... He is probably on a different sleep pattern than you.
Scream into a pillow... that will help release your tears and at the end you will feel better...
Please let me know how you are doing..
Lisasview
Comment Written 26-Jan-2024
reply by the author on 26-Jan-2024
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I try to be patient, Lisaview but sometimes it is challenging. He is such a good man. I hid the remote on the second TV, but this morning he used an old remote to turn on the 2nd TV twice.
You give me a couple of good ideas to tamper with his impulses.
Thank you for your kind words.
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I am glad you might be able to use my ideas...your life easier.
There are probably several more tings you can do to make...
A check list on a big sheet of paper in big bold letters (maybe red) with daily simple routine things he needs to do would be helpful. For example brushing his teeth.
I do know that the possiblity of falling is an issue. My father in law fell in the bathroom and hit his head on the bath tub. e survived but that is wen I realized ow many fall in bathrooms. So we put a heavy blanket along the edge of the bath tub...just in case.
I wish you the very best ary,
Lisa
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Thank you. We converted from tub to shower with safety bars. Good idea. I know he forgets things like brushing his teeth.
Mary
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Oh, I am full of ideas...not sure why...always want to be helpful,
Lisa
Comment from karenina
Huntington's Disease is one of the most difficult to manage... Some drugs to mitigate symptoms, but no cure.
God Bless you for caring for him at home, but please look into getting some respite care, so that you can remain healthy.
P'shaw on reviews! You're priorities are spot on!
Is there a support group in your area for caregivers/family of those afflicted with Huntington's?
Please consider one!
Google:
Subscribe to Huntington's Disease Society of America (Organization)
If you need to vent, PM me!
Karenina
reply by the author on 26-Jan-2024
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Huntington's Disease is one of the most difficult to manage... Some drugs to mitigate symptoms, but no cure.
God Bless you for caring for him at home, but please look into getting some respite care, so that you can remain healthy.
P'shaw on reviews! You're priorities are spot on!
Is there a support group in your area for caregivers/family of those afflicted with Huntington's?
Please consider one!
Google:
Subscribe to Huntington's Disease Society of America (Organization)
If you need to vent, PM me!
Karenina
Comment Written 26-Jan-2024
reply by the author on 26-Jan-2024
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Thank you Karenina for your ideas and kind words. His neurologist tried to get him into a specialist at Massachusetts General or Beth Israel in Boston. Both hospitals have departments solely for Huntington's. Both ignored us. My guess is that if he were 45, he would be accepted, but at 75 they do not want to invest their time.
She is now searching for specialist to take him under their care.
Mary
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I know several neurologists at Mass General. My mom was under their care.
Would you like me to inquire?
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It cannot hurt. Name Harvey Vigasin
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I sent you a PM with all the info...
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Karenina, Can you send me the application again. The slowness of his doctor has me questioning his care
thank you
Comment from Dolly'sPoems
I am so sorry you are suffering like this Mary and this disease sounds awful and your husband is suffering too. I wouldn't worry about not reviewing as this is the last of your concerns here. It sounds like this situation is not going or improve and the only thing you can do is concentrate on looking after your own health and getting some sleep too. As long as your husband is safe then you need to forgive him for his behaviour as he cannot help it. Having said that, you also need to make sure you stay well and your mood does not take a nose dive. Keep your sense of humour Mary and I feel for you just now, love Dolly x x x
reply by the author on 27-Jan-2024
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I am so sorry you are suffering like this Mary and this disease sounds awful and your husband is suffering too. I wouldn't worry about not reviewing as this is the last of your concerns here. It sounds like this situation is not going or improve and the only thing you can do is concentrate on looking after your own health and getting some sleep too. As long as your husband is safe then you need to forgive him for his behaviour as he cannot help it. Having said that, you also need to make sure you stay well and your mood does not take a nose dive. Keep your sense of humour Mary and I feel for you just now, love Dolly x x x
Comment Written 26-Jan-2024
reply by the author on 27-Jan-2024
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I appreciate your kind words and advice, Dolly.
He had a good day today, and I got to sleep a little more. The only event was my fault. I forgot he cannot follow directions, as an example, if you ask him to do something. It gets muddled up. He will bring you a cup if you ask him to pick up a plate.
Thank you again for your kindness.
Mary
Comment from LateBloomer
Oh Mary, you are understandably going through a difficult time. Some of the things your husband does may not be from the Huntington's Disease, but rather than the general, old-fashioned "man" disease. There are other women here whose husbands watch cable news, 24/7, and my husband is one of them. Our husbands also do some of the other things that you have mentioned.
It sounds like you may need a break or someone to help out, perhaps one day a week, but I did hear your message that what you miss most is your husband, the husband that you have known all these years.
The road ahead is not going to be an easy one, but know, your FS family is here. You can PM me at any time. With Prayers,
Sincerely, Margaret ~ LateBloomer
reply by the author on 28-Jan-2024
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Oh Mary, you are understandably going through a difficult time. Some of the things your husband does may not be from the Huntington's Disease, but rather than the general, old-fashioned "man" disease. There are other women here whose husbands watch cable news, 24/7, and my husband is one of them. Our husbands also do some of the other things that you have mentioned.
It sounds like you may need a break or someone to help out, perhaps one day a week, but I did hear your message that what you miss most is your husband, the husband that you have known all these years.
The road ahead is not going to be an easy one, but know, your FS family is here. You can PM me at any time. With Prayers,
Sincerely, Margaret ~ LateBloomer
Comment Written 26-Jan-2024
reply by the author on 28-Jan-2024
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Margaret, thank you for your kindness. I appreciate your thoughts and prayers.
Best wishes,
Mary
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Oh Mary, I have been thinking about you since you wrote this story. You and your husband are both in my prayers. I also pray that somehow you will get some needed relief.
Sincerely, Margaret
Comment from royowen
I'm so sorry Mary, it must be awful for you, particularly since you can only post when you hubby is napping, it's a generational disease I believe, I hope that you get relief Mary, I'll pray, well done, blessings Roy
reply by the author on 29-Jan-2024
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I'm so sorry Mary, it must be awful for you, particularly since you can only post when you hubby is napping, it's a generational disease I believe, I hope that you get relief Mary, I'll pray, well done, blessings Roy
Comment Written 26-Jan-2024
reply by the author on 29-Jan-2024
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Thank you Roy for your blessings and prayers. I have had a couple of good days here, so prayers must be working. It is passed down from his dad, but it was kept quiet the last 2years of his life. His grandfather died young in Russia so the history was unknown
Blessings
Mary
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Bless you
Comment from Gypsy Blue Rose
Thank you for sharing so openly and honestly. It sounds like a very difficult situation. Is your husband the one with Huntington's Disease? Or you? I think it must be him.
Don't worry about reviewing, the important thing is your health. You need your sleep. I use ear plugs and eyes mask... it helps.
I wish you well, my friend.
Gypsy
reply by the author on 30-Jan-2024
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Thank you for sharing so openly and honestly. It sounds like a very difficult situation. Is your husband the one with Huntington's Disease? Or you? I think it must be him.
Don't worry about reviewing, the important thing is your health. You need your sleep. I use ear plugs and eyes mask... it helps.
I wish you well, my friend.
Gypsy
Comment Written 26-Jan-2024
reply by the author on 30-Jan-2024
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Yes it is my husband. He has good days and bad.
Thank you for your review and concern.
Mary
Comment from lyenochka
Thank you so much for writing this. Please do not worry about reviewing. I just want you to be healthy and sane for the arduous task for caring for your husband. I am planning to write something for the many here who are their spouse's caregiver. Sending prayers.
reply by the author on 26-Jan-2024
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Thank you so much for writing this. Please do not worry about reviewing. I just want you to be healthy and sane for the arduous task for caring for your husband. I am planning to write something for the many here who are their spouse's caregiver. Sending prayers.
Comment Written 26-Jan-2024
reply by the author on 26-Jan-2024
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Thank you, Helen, for your kindness and your much-needed prayers.
He is ok, tonight, but this morning he was in full throttle with turning on the TV and all the lights for me to get up at 3 AM. I shut everything down and went back to bed and sure enough, he started again at 4 AM.
Luckily, I caught a little nap time this afternoon.
Mary
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Your post inspired my poem today and in the notes I referenced your post. Thanks for keeping in touch when you can.
Comment from Jamison Brown
Dear Mary, This is a sad but very well-written story. Speaking just of the writing, your story is exceptional. You deliver it admirably under the circumstances.
I pray that your husband and you find some much-needed relief from this insidious disease. Blessings. - Jamison
reply by the author on 27-Jan-2024
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Dear Mary, This is a sad but very well-written story. Speaking just of the writing, your story is exceptional. You deliver it admirably under the circumstances.
I pray that your husband and you find some much-needed relief from this insidious disease. Blessings. - Jamison
Comment Written 26-Jan-2024
reply by the author on 27-Jan-2024
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Thank you Jamison for your very kind review and prayers. I am honored that you gave our story six stars.
Blessings,
Mary
Comment from Terry Broxson
Mary, this is well written. The way you constructed the story kept your readers engaged. We knew there had to be a reason for his actions. The sadness of the reality washes over your audience like a cold mountain waterfall. Exceptional. Terry
reply by the author on 27-Jan-2024
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Mary, this is well written. The way you constructed the story kept your readers engaged. We knew there had to be a reason for his actions. The sadness of the reality washes over your audience like a cold mountain waterfall. Exceptional. Terry
Comment Written 25-Jan-2024
reply by the author on 27-Jan-2024
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Thank you, Terry, for this wonderful review and kind words.
I appreciate your taking the time to read and especially for the six stars.
Best wishes,
Mary