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To Bergamotte - deepest condolences - from all of us

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Old 10-16-2018, 06:45 AM   #1
jeffreyn
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Default To Bergamotte - deepest condolences - from all of us

Dear Bergamotte,

It was very sad to read that your husband has recently passed away. I hope that you can find the strength to get through this difficult time.

I remember your first post back in June 2016, when you sought help from us regarding a "medication dilemma". The neuro had increased your husband's Madopar dosage and your husband was experiencing side effects. We all piled in to give you advice.

You've been silent for the last 18 months or so, and I guess we figured that you had other things that needed your attention.

Deepest condolences, to you and your family, from all of us,

Jeff

A Medication Dilemma
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Old 10-25-2018, 02:20 PM   #2
Bergamotte
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Default Belated Thank You for Condolences

Dear NeuroTalk friends,

My apologies, I have not been on Neurotalk for a couple of weeks due to my husband's delayed funeral and then post-funeral estate paperwork. I just saw jeffreyn's kind message of condolence. Thank you so much, jeffreyn.

In April, my dear husband lost the ability to swallow. He received a stomach tube (PEG tube) and was started on a standardized tube-feeding formula, which he continued to receive until he passed away.

It isn't productive to look back and ask, "What could we have done differently?" But in fact there are two changes which *might* have made a critical difference.

(1) I wish I had pushed harder for him to be allowed to be cared for at home by me and our domestic helper and a nurse. The infections he contracted in the nursing home and various hospitals were what indirectly caused his death; they were all nosocomial bugs, i.e., Clostridium difficile, an MRSA look-alike (a staph with the same sensitivities and resistances as MRSA), another non-MR Staphylococcus aureus, and Vancomycin-resistent Enterococcus. They required treatment by increasingly stronger antibiotics, which wiped out his friendly intestinal bacteria so that he had no resistance whatsoever against new infections.

(2) I would have tried harder to find a dietician who would allow me to give him a blended real food diet rather than the sweet standard tube feeding formula. The sweet formula worsened his pre-existing neurogenic diarrhea, the dietician admitted as much; and, on it, his Parkinson's progressed very rapidly. The latter is what I would expect to happen *if* the fungus theory of Parkinson's was correct. In his last days he was like a man of stone, completely immobile, communicating only with eye-blinks, despite being on Madopar (levodopa and benserazide) tablets.


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Originally Posted by jeffreyn View Post
Dear Bergamotte,

It was very sad to read that your husband has recently passed away. I hope that you can find the strength to get through this difficult time.

I remember your first post back in June 2016, when you sought help from us regarding a "medication dilemma". The neuro had increased your husband's Madopar dosage and your husband was experiencing side effects. We all piled in to give you advice.

You've been silent for the last 18 months or so, and I guess we figured that you had other things that needed your attention.

Deepest condolences, to you and your family, from all of us,

Jeff

A Medication Dilemma
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Old 10-26-2018, 07:26 AM   #3
jeffreyn
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Hi Bergamotte,

Thanks very much for sharing with us your insights. I think that it is "productive", in the sense that it gives us all a chance to learn something from your experience.

What have I learned? Well, if nothing else, I have been reminded about why I do high-cadence cycling, why I take supplements, why I spend time at NT and many other places, trying to learn more about this disease that I have. I know that my fate is not in my hands, but I must continue to do all I can to give myself, and my wife, the best chance of the best possible outcome.

Thank you for sharing.

Jeff
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Old 10-27-2018, 10:12 AM   #4
Bergamotte
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Help I Will Always Feel a Part of This Community!

Thank YOU, Jeff. In the coming months, after I write up an account of my husband's final illness for family and friends and to try to understand more fully what happened, I hope to contribute more observations to this forum. Everyone's Parkinsonian experience is unique, but there are elements of interest to many people.

As the wife of a PWP, I lived with him 24/7 in hospitals and a nursing home for six months before he died. What I saw him go through, changed me forever. As the widow of a PWP, I will always have an interest in Parkinson's disease. I can't alter what happened to my husband, but I may be able to help others so afflicted. For example, I may try to start up a support group for PWPs and their families in the European country where I live, since nothing like that exists yet here.
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Old 10-28-2018, 06:30 AM   #5
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Dear Bergamotte, I am so sorry to read of your dear husbands last 6 months, all of which you lived with side by side. My sincere condolences.
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Old 10-30-2018, 05:27 PM   #6
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Default Thank you

Dear Pamela June, I appreciate your kind condolences! I couldn't leave my husband alone in nursing homes and hospitals, as he was physically in a helpless state. I wanted him to be able to look over and see his wife and to know he wasn't alone. And, because he and I had always been so happy together, I needed his company as much as he needed mine. I only wish I had been able to do more. It was very hard to lose him, but I have to regard it as a blessing that he no longer has pain nor any worries.
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