Dear all, since my mother, affected with PSP, has died last March, I have found heart-wrenching coming here and read about the experiences of everyone affected by PSP.
I am obviously still grieving and finding it hard to accept that, due to the pandemic, I was not able to see her (she was in Rome, Italy, and I live in London, UK).
I think of each of you dealing with PSP in a form or another in your lives and send you my caring energy always.
As I was looking to add Black Pepper to my Curcumin (Turmeric) supplement, I have found this information from Suzy Cohen, a herbalist: she mentions Dysfagia (at the end of the article, linking it to stroke symptoms but certainly it can be applied for PSP affected people), so I thought to share this resource for those with PSP who may benefit from trying this tip:
"Next to salt, black pepper is the most common spice. There was a time when only the wealthy could afford black pepper. It stimulates taste buds as well as the production of pancreatic enzymes. In animal studies, one compound in pepper called “piperine” was able to reduce cancer-causing enzymes specifically in lung cancer. This research was published in Molecular and Cellular Biochemistry. Colon cancer too! Researchers in the United States found that adding black pepper to a culture of colon cancer cells slowed growth. I’m a thyroid expert, having wrote the book, Thyroid Healthy: Lose Weight, Look Beautiful and Live the Life You Imagine. I have to tell you that people with hyperthyroidism (elevated thyroid levels) might benefit from black pepper. Researchers from India found that piperine works just as well as certain thyroid medications in treating hyperthyroidism, at least in their animal model. Doesn’t hurt to sprinkle if you have Graves’ disease! You’ll commonly see piperine in curcumin dietary supplements and the reason it’s there is to drive the curcumin into your cells since curcumin is not normally absorbed well on its own. Finally, if you have rheumatoid arthritis, pipeline is known to reduce inflammatory compounds which cause flares.
If you have trouble with swallowing from a stroke, termed dysphagia, sniffing black pepper oil -NOT the pepper itself- might help with the difficulty swallowing induced by the stroke. This research was published in the Journal of the American Geriatric Society."
Wishing you all strength, support and resilience to navigate this difficult and complex journey.
Antonella
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Zibo
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Hi Zibo, Thanks for a very helpful and impressive reply about black pepper, and lots more, re PSP. I am 80, in UK, ex natural therapist, diagnosed PSP 3.5 yrs ago, and deteriorating only slowly (so far). I take a dollop of Turmeric in hot milk nightly with black pepper, as my partner is well into E. Indian methods. PSP (in UK) seems a minefield to navigate, with practical difficulties and all the unknown factors, so I have made 3-pages of my 'Journey and Suggestions' to help others along the road. Also useful for other degenerative brain conditions. Happy to send this to you if you wish, but unsure how to do so privately, and reluctant to spatter it all over this page! Very good wishes TimbowPSP
I tend to use only natural remedies and also drink a combo of chia nut milk which includes turmeric; I also take curcumin in tablets. I am very, very interested in connecting with you and learn from your journey. I am sure there is a way to send the information you have so carefully collated, which I am super super keen to read, via private message in here, as I have received private communication in here to support my mother. I wills thrive to learn how to do and send another reply with the instructions. Thanks so much again and I really wish you all the best. Antonella
Hi Zibo.Peace and blessings to all PSP patients and carers from a beautiful day in Dublin.
My father had PSP and has now passed.
We found comfort from essential oils.
A strong blend of eucalyptus, black pepper and ginger in a carrier oil like almond to rub into sore muscles, especially around the neck area. Soaking some cotton wool in cold water to place over the eyes so that the vapours didn't cause any irritation. Some small massage with lavender and rose (again blended) at night time to relax.
Diffusers with anything sort of menthol like oil (eucalyptus and tea tree) in the room during the day to help break phlegm down a small bit. Sometimes citrus oils (lemon, lemongrass, orange) into the diffuser for a change.
Massages with thyme, bergamot and cinnamon (again blended) for the lower limbs but only when there were no cuts which unfortunately Dad got quite a bit from falls. That blend isn't the most pleasant smell but it was a warming feel and I think helped at the end of the day. Dad used to get a second wind after that massage to use his rollator.
I found the more expensive brands of oils were better but I know that there are additional costs that come when someone is ill so the expensive brands might not always be an option.
what an amazing support you have facilitated for your father, I am deeply touched. thank you for sharing extra tips. I use aromatherapy for myself and to made diy cleaning products. I love the idea of rose and lavender blend: I will make it right now for tonight. Thanks so much and heart felt condolences. Anticipatory grief and grief are a combined challenge in processing our parents' death after a degenerative illness such as PSP. My warm wishes to you. Thank you. Antonella
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