The Frustration

Why is it that some people who need help ask for help and when help is provided, the assistance is rejected?  I can’t tell you how many times I have come across this scenario.  I try not to offer advice unless the advice is requested. You would think that if someone were open enough to ask for help, then they might be open enough to try the advice.

Those Parkinsonians who are unwilling to take charge of their meds or their condition are going to face an uphill battle and make the future that much harder on themselves.  A small change in our bodies can set an array of problems off that we would never expect.  For example, a minor toe infection can throw off your walking, your comfort, and lead to a fall down the steps. I have seen things very similar to this account.  If you are able to address what appears to be insignificant and stamp it out early, the small stuff doesn’t go rampant.  If left unattended, the scab may lead to infection and worse.  A big component of self-care is knowing your body’s strengths and weaknesses.

Something as simple as missing meals, dehydration, or poor nutrition can lead to a laundry list of blood, psychological, and balance related issues that throw the whole body out of balance. People with Parkinson’s disease are prone to low vitamin D levels which may bring about stability and bone issues, according to medical websites.  Keeping up on your nutrition and staying current on your regimen of medicines is vital to receive maximum benefit. When we fail to monitor our body and our condition, we put ourselves in harm’s way and open ourselves to damage more of our systems.

I am not a doctor and this is just my opinion. This is NOT medical advice—it is just what I think.

About Karl Robb

Karl Robb has had Parkinson’s disease (PD) for over thirty years. With symptoms since he was seventeen years old, Karl was diagnosed at the age of twenty-three. Now fifty-one, he is a Parkinson’s disease advocate, an entrepreneur, an inventor, an author of two books (A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease and Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit) with his wife and care partner, Angela Robb. He has blogged for ten years on his website, ASoftVoice.com. He is a Community Team Member to ParkinsonsDisease.net and is a contributor to PatientsLikeMe.com. His blog, ASoftVoice.com, has been recognized four years in a row by Healthline.com as one of The Best Parkinson’s Blogs of 2018, 2017, 2016, and 2015! Healthline.com also listed the book A Soft Voice in a Noisy World in their list of Best Parkinson’s Disease Books of 2017! FeedSpot.com has recognized ASoftVoice.com for 2018 and 2017 as a Top 50 Parkinson’s Disease blog. Karl was a blogger for the 2016 World Parkinson Congress in Portland, Oregon. He is a frequent speaker on Parkinson’s disease issues as well as an experienced advocate for Parkinson’s issues throughout the United States. He is also an advisor and consultant on Parkinson’s disease. Karl is a board member of both the Parkinson Voice Project and Parkinson Social Network based in Virginia. He was an active board member (6 years) and an advocate (18 years) with the Parkinson’s Action Network (PAN). In his free time, he is a photographer, constant writer, longtime magician, and a practicing Reiki Jin Kei Do master. Karl received a Bachelor of Arts degree in English from the University of North Carolina at Chapel Hill. He has been featured by The New York Post, BBC Radio, CBS News, National Public Broadcasting (NPR), in The New Republic magazine and NHK World Television, as well as several Washington, D.C., television stations. You may reach Karl via email at asoftvoice@gmail.com, on Facebook, or contact him via Twitter @asoftvoicepd. I’m available for speaking engagements to share my experience living with Parkinson’s disease. Please contact me at asoftvoice@gmail.com if you are interested in having me speak to your group, conference/symposium, or would like me to write an article for your newsletter or blog. I am not a medical professional and this information is my personal view. I am just sharing my medical journey with you, the reader. I encourage you to seek all avenues that can benefit your condition.

Posted on July 11, 2013, in Uncategorized and tagged , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. 1 Comment.

  1. Karl, I know exactly what you are saying. In fact, I’ve been guilty myself a time or two. In my opinion, I would forget to take them as directed and suffer the consequence afterwards. As you know, I don’t like taking medication. I have a problem with taking a pill to get rid of one problem just to have other problems occur as side effects. Such is the case with many Parkinson’s meds. The side effects are worse than the benefit! It may be my attitude toward this chronic disease called “PD.” I sometimes don’t like what it is doing to me. That being said, I thank my God for every day the good lord gives me on planet earth and I make the best of each one. I walk, exercise (physical and speech), I bike, I fish, I laugh and a host of other “life sustaining” rituals that limit those activities. My grandfather used to say, “When I die, bury me with my butt up! That way people can use it for a bike rack.” I don’t know what he meant by that but he was taking a lot of medication at the time. I always thought it was the medications that killed him. Seriously, medications for the good they perform, have interactions and other consequences. If you are experiencing a problem and you think it is medication related. seek a medical opinion and “take as directed.”

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