For the first 7 years of being diagnosed with Parkinson’s disease, I didn’t see a need, nor did I have a strong desire to join a Parkinson’s disease support group. When I moved to the suburbs, my neurologist, at the time, encouraged me to see what support groups could offer. After attending meetings of a few support groups, my wife, Angela, and I envisioned what we wanted in a group. In a very short period, I went from avoiding Parkinson’s support groups to speaking at them and even starting one of my own. My wife and I ran our support group for a dozen years. I learned so much from so many amazing people. As much as I thought that I didn’t need a support group, it turned out, that I really did.
The reality is that a well-run support group offers camaraderie, information, and a wisdom that comes from so many, all in one place. A support group can show you what is working and what to avoid, doctor information and feedback, available classes that pertain to Parkinson’s, local therapists, caregiver support, Parkinson’s news, and speakers in your area. When you find a good group, it feels like another family and a place that you belong. A strong network of family and friends is crucial to your health and wellness, no matter what the illness.
Some support groups may not match your personality or may not be the kind of group that you feel comfortable with, right now. I wanted a group that focused on the sharing of information and left me more empowered than when I came in. We made a lot of friends, shared both the good times and the rocky times, and provided one-another moral support. Despite our age differences and unique situations, we all learned together and bonded together into a cohesive unit for most of the group’s longevity.
We Are All In This Together
Knowing that you aren’t alone, is so important. Something as small as telling someone that you are thinking of them or that they matter to you can save another’s life. Knowing that people are thinking about you and caring about you is so empowering. Just a simple quick text, an email, a phone call, or a good old-fashioned greeting card can make a huge impact.
Care-giving has its stressful moments. We all need a break. Taking time for ourselves is not selfish-it’s a precious necessity. Your self-care makes you a healthier more helpful contributor.
Helping Ourselves Helps Those Close To Us
Patient or caregiver, there is no shame in admitting that you need help. It takes a strong person to go outside his or her comfort zone. Tell someone close to you what you are feeling and to let them find assistance for you.
I am not an expert on mental health nor am I a doctor. This is not medical advice; it is only what I have seen for over the 30 plus years of having Parkinson’s disease. I have observed friends struggle, who may have benefited from this kind of help. If you see a friend in need, reach out and offer that help. You may be saving a life.
National Suicide Prevention Lifeline is 800-273-8255 or 988 in the USA. Go to https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines for an international list of hotlines.
Wishing all ASoftVoice.com readers a very Happy Holiday Season!
From Karl Robb:
On the morning of this chilly windy Thanksgiving day, I want to express my thanks for the support and sincere gratitude that I feel for the readers around the globe that take the time to read my writings on both this site (asoftvoice.com) and (www.parkinsonsdisease.net). I am so appreciative for family and friends. Gratitude is definitely the word of the day!
Thanksgiving reminds us that the things that we may take for granted and discount as small things in our lives, are really not so little at all. I hope that today is special for you. Please know that as I send this out to you in hope that it brightens your day. I wish you a day full of joy!
Trust, faith, hope, and diligence are four key components to seeing your way through any health challenge. Personally, they have made my 30 years with Parkinson’s disease more than just sustainable. Living well with Parkinson’s disease takes a variety of skills that must be honed and used. Before I get to trust, let me express the essential weight that faith and hope play when facing illness.
Without faith and hope our internal drive shuts down and leaves us vulnerable to only worsen our condition. We all need to visualize a path for our future, whether it is a leap or a small step. Your path is yours alone and only you can determine the scope of your vision.
When I speak of trust, I mean the belief in oneself as well as believing in others. Trusting that if we follow our gut, listen to our inner voice, and do what we know in our head/heart is a big part of making a good decision. There is much more, though. When it comes to making an informed decision about your medical condition, it is best if you’ve done the research as well. You may want to consult those around you for their opinion.
Trusting your doctor’s decisions, his or her pharmaceutical suggestions, surgical outlook, or any other decision will require your educated consent. You have the free will to reject or accept your doctor’s suggestions. Trust can only go so far when questioning your doctor. You must weigh the pros and cons of the proposed medicines and possible procedures. Providing cogent reasons and facts for why you are adamant about going against a doctor’s wishes needs to be thought out and be thoroughly researched. Depending upon the severity of the recommendation, a second or third opinion may be needed, despite the trust.
Diligence means making use of your time and taking care of yourself. There are things that you can do for yourself that even your doctor can’t. Maintaining a healthy lifestyle and keeping a schedule take discipline but can be very helpful when structuring your day. If you take medicines every day, structure is crucial to stay on time when administering medicines.
There was a time when we didn’t question our doctor’s advice, but with greater access to information and a better understanding of therapies, nutrition, exercise, diet, meditation, reiki and more, there is real opportunity to work with your doctor. As a constant seeker of information about improving your condition, you become a resource for your doctor and are empowered with knowledge that may unveil new options for your future.
Tomorrow, James Parkinson‘s essay will be 200 years old. Since his discovery, modern medicine has made strides with L-Dopa and Carbi-dopa breakthroughs that have become the long-standing gold standard of regimens. Not to diminish the importance of the Levadopa breakthrough, but that was over a half a century ago.
New drugs and procedures are slowly trickling out, but no one drug that I know of has impacted Parkinson’s disease as that of L-Dopa. To this very day, since my 1991 diagnosis, I have found benefit from this most amazing life-changing drug. I am very lucky to report that my dosage, even after all this time, is a lowly 3 pills (25/100) a day. I aim to keep my pill consumption to the utmost minimum, but only time will tell.
I am hopeful but impatient as I plead with any pharmaceutical company, researcher, doctor, or anyone connected with creating new innovations to the neurological world that a huge need is there, right now, and an escalating problem that will impact so many. I would offer detailed numbers, but at this time, as we have no hard numbers, for lack of a registry devoted to Parkinson’s patients, the numbers just aren’t gathered, yet.
On World Parkinson’s Day (4/11/17), like millions around the world, I will be participating in #UniteForParkinsons. Please join us to spread awareness via social media to the world about Parkinson’s disease. Visit https://www.worldparkinsonsday.com/#world-parkinsons-day for more information!
If you have Parkinson’s disease, you probably didn’t get it overnight. Getting better probably won’t happen overnight, so don’t expect a quick fix. Be patient and stay open to trying different complementary therapies and diet changes to see what might work best for you.
Reducing the stressors in your life and any trigger to stress that leads to stress can make a huge difference in your symptoms.
Do you ever notice that when you are having a great time (vacations, a hobby, an outstanding meal) that you may miss a dose of medication due to the fact that you didn’t need it? Isn’t it strange to find pills leftover at the end of the day because your body didn’t need them?
Don’t let a diagnosis of any illness brand you! I don’t believe the words “chronic, degenerative, and progressive” should ever be used for anyone! Don’t think of yourself in those terms!
Hope, tenacity, determination, strength and creativity are more than words. Being stubborn can be of help!
Don’t let denial delay you helping yourself! Every day is an opportunity to be better—whatever that means to you.
Positive thinking really can reinforce good overall health. Focusing on the negative is unproductive and only weakens the connection of the mind, body, spirit connection.
In Parkinson’s as well as other illnesses, just because one individual responds well to one treatment or drug doesn’t guarantee the same result for others.
Devising a health plan and staying open to solutions outside your comfort zone that aren’t overly expensive or invasive are worth consideration.
The issue of “control” plays a major role in the Parkinson’s world. Knowing when to let loose of it and when to take charge of it will make your life much easier and less stressed.
These are just a few of my observations from living with Parkinson’s disease for over 30 years. I hope you find them to be of help and encourage you to share what have learned with me and my readers. Remember, I am not a doctor and this not medical advice. Consult with your physician or neurologist before making any changes. Thank You!
On occasion I get requests to endorse, promote, or mention products. I am careful what I mention on this site and I take it very seriously.
A little over a month ago, a very inspirational and motivating teacher and fellow Parkinsonian from the Midwest, Dora Leonard, introduced me to a song that she and her son, Jeremy Leonard, collaborated on together. The song, I Will Choose, came from a poem written by Mrs. Leonard, put to music created by Jeremy, and sung beautifully by a local singer in her church, Shawn Christopher, who helped her bring the song to life. She is generously donating all sales to Team Fox.
After hearing the song for the first time, I was moved and my wife was brought to tears. That’s what music is supposed to do.
I Will Choose is an uplifting anthem of hope and dedication to staying strong and positive whether you face Parkinson’s disease, another illness, or any obstacle that may crop up.
If you seek a piece of music for a boost of motivation look up I Will Choose by Jeremy Leonard (feat. Shawn Christopher) on iTunes.
There is still so much mystery that comes with the human body. The mind-body connection is interwoven and not fully understood. It makes sense that what we eat, drink, think, hear, feel, and say has consequences that most probably play a role in our overall health. Maybe, just maybe, through the benefits of modern science and complementary therapies, each of us may find our unique regimen.
This is from my book:
Positive thinking and hope can help people get through the most traumatic of events. Feats of superhuman strength in times of crisis, heroism under severe pressure, survival under extreme conditions, and the ability to push the body beyond its breaking point are just some of the unexplained medical phenomenon that science can’t fully dissect. Why shouldn’t everyone be capable of such feats?