Reuben
Forum Replies Created
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Reuben
MemberMarch 9, 2023 at 1:01 pm in reply to: Do you use adaptive clothing or equipment? If so, which items are among your favorite and why?Mary Beth – I have fallen into a rabbit hole on this site and hope that you can help as I began on your query here. I began following this thread and somehow got into a “RON” question thread about Naturopathic Treatments that I didn’t realize had initiated back in March 22. As it is March 23 it was clear to me now that I thought I was in a consistent and current sequence. Anyway, in this thread actually a year old, I cam upon a participant contribution from Dean C Kramer, MD gastroenterologist that had offered a free copy of a pamphlet that I wanted to read and responded to his message #26709 requesting the pamphlet. Today I received an irrelevant email from another participant – maybe I because I had signed on to receive ongoing contributions to whatever thread I was in at the time, I don’t know. Can you help me by contacting this Dr. Kramer requesting an email to me or to you (eventually to me with his pamphlet or how to access) or please let me know to forger it. Not a critical matter of course. But some productive response would help.
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I had written a visual request for a copy of his pamphlet in the “text” link, but I don’t receive or send “texts”. no “smart” phone. I have a access to send and receive emails which is the way I participate in this site. I repeated the request in the “visual” just prior to this P.S. so that if Dr. Kramer does receive my request he can/will respond via email and not via texting.
Here’s hoping.
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Dr. Kramer – I am interested in receiving a copy of your pamphlet via email. But I am reluctant to put my email address on this site if that is what I’d be doing. Haven’t reached out before to a participant in a chat before and trying what seems might work within this chat site. I’m hoping that you will see this request for my own educational purposes (I tend to agree with your gastro hypothesis from both study and experience). I would like this pamphlet as intended for my own education and will not share or otherwise use.
Thank you. Hope you receive this and are able to comply.
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Bumping into things including doorways and knocking things over and dropping things, etc. are probably related to predictable perceptual motor/coordination/fine motor issues. When the seemingly minor or unremembered bumps lead to bruising (sometimes skin tears with occasional bleeding for me), I suspect age is also involved. As we age, our skin thins as we lose the fat layer that ordinarily cushions the common bumps into objects, walls, doorways, and such. That’s what my experience and reading have lead me to conclude on this. I once asked an OT about this and she suggested “Be careful!”. Oh, like I wasn’t?
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It’s always heartening to read these many reports of folks successfully overcoming one or more symptoms of PD with the seeming endless array of “alternative treatments”. I have no reason to doubt any individual’s good fortune. However, it is quite a leap to assume that anyone else’s success is necessarily appropriate or even safe for anyone else. Not intending to be a downer on this, but really, there are so many variables involved that vary from one person to another. For just a few examples, the other, if any, meds that we take; our diet; the brand and/or dosage of the specific recommendation; the duration of the disease; perhaps our age; other medical (and non-medical) conditions present; as well as the interactions of the myriad of possible influencing factors. I guess I’m suggesting being very cautious in generalizing from the experiences of each other. My hope is to find a doctor who is as knowledgeable as a combination of a number of the contributors here (e.g. Russ Hudson on Butyrate and Bolt Upright, and others) and one who is a board certified neurologist with advanced specialization in movement disorders as well as a dedication and commitment and accessibility to their patients. Good luck to me, eh? But one such source who really knows YOU would enhance the feasibility of any treatment recommendations. Of course, I keep reading and appreciate the sharing. At least it raises good questions for a physician you trust. But no doctor or anyone else has all the answers or PD would not be the mystery it continues to be. For every promising lead I read, I find another or two equally credible that dispute it.
My intent here is not to discourage, but to try to be helpful in the conversation. -
Yes, chronic and prevailing anxiety at least a year prior to diagnosis along with a number of other symptoms emerging prior to PD diagnosis. Continuing anxiety and depression (meds tend to increase fatigue I think and don’t seem to allay anxiety much). But they seem to help with sleep.
I have been practicing meditation and mindfulness with online classes and sessions which I do find helpful. Nevertheless, chronic anxiety and fear along with other motor and non-motor symptoms and an uncomfortable (understatement) manifestation in stomach discomfort-clenching. -
This is a particularly difficult issue for a number of reasons and probably requires a multiple perspective view on the “causes” of the onset of higher levels of stress, anxiety, and depression. Independent of the contribution of PD itself, medications, food (both timing with meds and the specific nutrients involved) wouldn’t most people experience some degree of depression just being diagnosed with PD. Compounded by the progressing symptoms (both motor and cognitive, as well as functional limitations in performance that ensue – like reading your own handwriting, sleep routines, urinary, vision, speech, swallowing, and on and on, an increase in stress, anxiety, and depression is a reasonable expectation. I agree with all the various viewpoints on this. There is no ONE answer. And with the variability among us in symptoms, progression, etc. as well as how we react, medically and practically, it’s gonna be different to some degree and in a variety of ways for each of us.
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Yes, getting out of the house has been a no-go for over a year now. Living in a crowded city with residents and tourists, the pandemic has required a “lock down” for safety which pretty much continues even with the vaccinations completed. Plus everything being on Virtual, I’ve lost a fairly active weekly exercise routine doing Silver Sneakers and a water aerobics class, each twice a week. I spend most of the day seated at my desk top computer with virtual activities and email communication. Seems to be the worst possible situation after PD diagnosis shortly before pandemic.
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Reading through this thread and thought to add that the sugar in the ice cream would likely counter the melatonin effect.