If you are embarrassed, sad, shamed, or lack self confidence about having Parkinson’s, I am here to tell you that you don’t have the energy or time to devote to such unproductive emotions. Stay strong! You have joined a community of amazing, caring, helpful people who are there to support you and encourage you. Spending time on activities that take you away from being your best will only deplete you more. Choosing to be positive and to be your very best can be a reality and not a mushy platitude!
It is up to you to make the first move. Admitting and succumbing to the realization that you need help is not weakness but new found strength. Helping oneself to learn about how others are surviving and thriving benefits all involved. This generous group of people with Parkinson’s and care partners are ready and willing to share their experiences of what has worked and what needs improving. There are tomes of great advice, educational videos, supportive medical experts, and organizations with helpful support groups and exercise programs! Be aware that your improvement and care all begins with your passion, diligence, and commitment to getting better.
I won’t say that being thrust into the world of Parkinson’s is easy and nor is it your first thought to just accept it and move forward. I had some dark days until I realized that my body, mind, and spirit were in jeopardy. My being is my responsibility. There is plenty of help out there, but you are your greatest resource. Now, build your team!
Parkinson’s is an illness that you do not fight, but work with, work around, and find solutions that work for you. In other words, Parkinson’s takes work! I, like you, am on a constant and continuous hunt for wellness or at the very least, some therapy, drug, exercise, or device to improve my condition. I wish you well!
What gets you out of bed every day?
What makes you happy?
What inspires you?
Every day may be about small victories.
Be proud of your achievements.
Don’t discount yourself or what you accomplish.
Parkinson’s Disease agonist medications (Requip and Mirapex) have been shown to cause compulsive behavior for some users. Some users have been shown to be prone to gambling addiction, sex addiction, shopping addiction, food addiction, and gaming addiction may occur. Compulsion may even entice users to go beyond legal limits to feed their desire or lose sense of time.
If you find yourself facing any kind of compulsive behavior that may be taking you away from friends and family, or is disrupting your life, tell your neurologist and someone close to you about breaking the cycle. Communication is so vital to your well-being. Carrying secrets only fuels the tension and stress on the mind and body. Letting go and making a change (with your neurologist’s help) might just be the right move forward.
As a child, I used to love winter. I would sled and ski and didn’t give the bitter cold a second thought. Now, I am less oblivious and less tolerant of the cold. My body functions and just moves more freely in warmer climates. Cold seems to cause greater constriction of the joints and even the muscles.
Winter doesn’t just bring on change of the physical body but with light changes and shorter days, the changes may impact your mood. Keep a close eye on your daily attitude and if you experience thoughts or feelings that you need to express (sadness, possible depression, or anger) consider getting help and stay on top of it, before it manifests into something you can’t control.
Once you find a routine that works well it becomes comfortable and automatic. The routine would be wonderful but adjustments must be made, because when one is dealing with Parkinson’s disease, the rules as we knew them change on us. The alteration in what was once normal can be both perplexing and sheer upheaval. The uncomfortable trick to working with this illness, and not fighting it, is analyzing what the body has changed and how do I counter-move to the newest change. The process is difficult and a tremendous challenge. I can speak from my own experience that as I continue to make slight adjustments in my daily life, I can tweak what isn’t working and slowly implement something new that might help. Part of the process is keeping an open-mind and a willingness to try what may be considered “unconventional”.
Here are 5 items to consider:
- Do- Keep a close eye on your medicine regimen. You don’t want to spike your dopamine level nor do you want it to plummet. Keeping the same schedule daily is your best bet for maintaining an even flow of medicine.
- Don’t–Avoid or at least reduce your consumption of high protein foods, high sodium foods, fatty foods, and unhealthy processed foods that may be interfering with your medications.
- Do-Something as simple as a banana before bedtime may reduce muscle cramping and improve your sleep. I’ve seen it work!
- Do–Breathing is an action many of us take for granted. The problem that I have found for many parkinsonians is that we don’t breath as deeply as we are able. Focusing on our breath and making sure that we are processing as much oxygen as we can is of vital importance. Through awareness, practice, and maybe some help through your local yoga teacher or an online video, you may expand your breath capacity.
- Do–Speak up –if you aren’t getting what you need from your support group, tell them what you need or start your own group.
Making slight and subtle changes everyday may be very beneficial!
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.
Join me, Karl Robb and my guest host, Angela Robb, as we answer questions and discuss issues impacting Parkinson’s disease(PD) patients, caregivers/care-partners, and those who want more information about living well with PD. Thanks to Robert Rodgers (www.parkinsonsrecovery.com) for the chance to guest host. Feel free to submit a question before the web show by logging into the web link and password below or phone your questions in live with the provided information and code below, on the day of the show (Sunday, December 9, 2012 at 5:00 PM Eastern Standard or 2:00 PM Pacific)
See the online and phone information below for show details:
Online Event password: karl2012
Primary dial in number: (206) 402-0100
Secondary dial in number: (323) 476-3672
Dial in password: 200414#
We live in a world of faster is better: food-service, information and news, data/technology, and most everything else. In a society expecting speed and instant gratification, someone with Parkinson’s disease (PD) or any neurological disorder is at a distinct disadvantage. When time is considered money and faster is better, the individual with PD suffers because he or she may lack the ability to move into fifth gear. What the person with PD does receive is the opportunity and challenge of learning true patience and the ability to learn to live in the moment.
Part of living with PD is the act of acceptance. This does not mean that you don’t continue to seek bettering yourself and finding therapies, but it means accepting that you are different and finding comfort in your own skin. Finding the balance in one’s life is a constant challenge. When illness is involved, if not put into perspective, can compound the stress and anxiety of basic daily living.
Coming to grips with your illness may take time and effort. In many cases it may seem impossible, but it isn’t. Seek out the part of you that is able to navigate the inner workings of your mind, body, and soul (spirit) to realize that this is a challenge, but one that you can meet. We are stronger and more capable than we know. Adversity can bring out the very best in us and release strengths that we forgot we ever had. Part of accepting an illness is keeping up the necessary search for relief and bettering oneself through proper nutrition, exercise, medical care, good drug management, and willingness to explore non-invasive complimentary therapies that may potentially improve one’s condition. An open and flexible mind may serve you well in seeking answers and solutions concerning your condition.