Play the hand that you are dealt. Is there a sane way for PD sufferers to make life choices?

First of all, what is your goal? To Maximize your years of life? To Minimize morbidity? To Avoid dementia? To Avoid snake oil schemes to drain your retirement funds? Remember, for many of us there is life after PD for our caregiver!

Beware of sweeping conclusions to TV polling, i.e. polls where the respondents select themselves. While the people on this site are for the most part very supportive, sharing, and have good intentions, trying to extract meaningful information from the responses that you receive to solicited advice can be very misleading. The best that you are likely to hear is some good guidance about life habits for those whose PD is advancing at a slow to moderate pace.

I am among the lucky ones and can attest to the fact that some prudent life-choices seem to benefit me. While I have often shared my experiences on this site (key word: Coconut Oil), and have found that there are several people who have had similar experiences, I find no basis on which I can make a claim that you are likely to benefit if you mimic my choices. I will only be able to estimate the duration of possible benefits when I am near death, and I will never have evidence regarding the consequences for me of alternative choices.

Now for the obvious: You are likely to get more responses from people whose PD is advancing slowly than from those whose PD has advanced very rapidly and who are severely disabled or dead after a couple of years. Many of these unfortunate ones were determined to do well and tried hard to no avail. Few of the dead bother to post blogs.

For some PD is very aggressive, and not so for others. PD seems to have a broad range of realizations, and the reasons for this are poorly understood. Institutions, which have made an effort to collect information from a large population of PD sufferers may have a basis for making broad claims. It is sobering these knowledgeable experts seem to be most cautious about drawing specific conclusions, e.g.

pdf.org/en/science_news/rel...

and

michaeljfox.org/understandi...

Good advice is to have good life habits: good nutrition, plenty of sleep, regular exercise. You know the list of what to avoid.

This makes sense for young and old, with and without chronic disease, male and female, etc.

This especially applies to our caregivers. The demands on them are substantial and they often are under a lot of stress. It is likely that they will outlive us. If you care for your caregiver, be aware that while they are caring for you, they may be neglecting themselves. One way that we can Care for our Caregivers is to encourage them to be prepared for their own future: socially, financially, and in good life habits. If you are partners in these efforts, you may benefit and you can experience a joy of sharing your love and your time together, while helping them to prepare for whatever the future holds.

You must play the hand that you are dealt. Play it well!

5 Replies

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  • Wise and unselfish words of wisdom, thanks.

  • Thank you--Showing love for the caregiver is so important! (1st Corinthians 13)

  • I agree with all you write above. Meanwhile your miraculous story still circulates in alternative/complementary media sites around the world. Some even appear as recent news with todays date.

    coconutoil.com/coconut-oil-...

    healthunlocked.com/api/redi...

    Last week an aquaintance with advanced pd and weight and movement problems discovered your story and posted it on facebook with high expectations it will be her new miracle treatment. Life is hard and She lives alone.

    In the article There is no statement with cautionary words such as - i can find no basis on which I can make a claim that you are likely to benefit if you mimic my choice. Yes you do say you may be lucky.

  • Hokoi

    I repeat: Where do you find the time and energy to stay on top of everything?

    I appreciate your alerting me that I am receiving a one-sided notoriety. I have written a new post "My Expectations for Benefits from a Coconut Oil Regimen" healthunlocked.com/parkinso...

    I have sent a copy to both of the sources you cited and requested that they be appended these words to their articles.

  • Excellent.

    Hope 2017 is a good year for you and for PD research.

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