April 28th, 2021
For Parkinson’s Awareness Month, Purdue University Press is featuring excerpts from Lianna Marie’s book The Complete Guide for People With Parkinson’s Disease and Their Loved Ones.
A diagnosis of Parkinson’s disease is as disorienting as it is devastating. The Complete Guide helps those suffering from the disease, their family, and friends make sense of what comes next. Its companion volume Everything You Need to Know About Caregiving for Parkinson’s Disease provides an essential resource for all caregivers of those with Parkinson’s disease.
A trained nurse, author Lianna Marie served as her mother’s caregiver and advocate for over twenty years through the many stages of Parkinson’s disease. She also founded AllAboutParkinsons.com, an online community that has connected and helped thousands of people with the disease, their families, and their caregivers.
Parkinson’s has been a part of my life for the past 30 years. Throughout that time, I’ve been sharing my mom’s story about her experiences with the disease, as well as my own as her caregiver and advocate.
Her name was Val and she had the disease for 22 years before she developed dementia as well. Along her journey with Parkinson’s she learned a lot, both about how to live and cope with the disease, and about herself.
As her daughter and caregiver, I learned a lot too.
When she was diagnosed, there wasn’t a lot of information available to help us understand what it meant to have Parkinson’s. We found a couple of medical books, but it was hard to find anything written by someone who’d actually lived with the disease. So instead, we learned about Parkinson’s by living with Parkinson’s
In 2005 when I wrote Everything You Need to Know About Parkinson’s Disease, Mom had been living with Parkinson’s for 15 years. She told me back then she wished there were more information available to help her understand and deal with her disease as it was progressing, and written in a way that she could understand. At that point no one had told us how powerful music could be in helping her mobility, or that there are reasons not to join a support group (there are definitely pros to joining one, but there are also cons), or that sometimes symptoms could disappear just by being really happy. We discovered these and many other useful nuggets on our own.
Together we came up with the idea of asking people with Parkinson’s, as well as their families, friends, and caregivers, the most important questions they had about the disease. We received a lot of questions, both general and specific, and then answered them in the book.
Now, 20 years later, there’s so much available to us online. You can pretty much Google anything you want and be inundated with information. The problem is, how do you know where to go? With so many websites out there (not to mention the ones whose main goal is to sell you some kind of drug therapy), it can be overwhelming.
In The Complete Guide, I’ve answered new questions and updated old answers and tried to keep the information as succinct as possible. Each chapter begins with a tip or observation from one of my readers — one of the many I’ve received over the years. Whether you have Parkinson’s or you know or care for someone who does, I hope this book will help you get the most important information in a way that you can understand.
Though Mom has now passed, my reason for writing the book remains the same: I want everyone who is affected by this disease to be as informed as possible so they can continue to lead happy, hopeful, and meaningful lives.
Did you know that stress can make Parkinson’s symptoms worse? It’s true. Stress and chronic illness go hand in hand. Stress can have a very negative impact on PD symptoms, sometimes increasing tremors and reducing mobility, so it’s important to manage the stress in your daily life and find ways to relax.
The first step is identifying the source of your stress. You may feel pressure from your social responsibilities, from managing your daily duties, or dealing with unexpected problems or emergencies. However, simply adjusting to life with Parkinson’s is a huge stressor in itself. There is anxiety and frustration that comes along with having to accept your new limitations and make adjustments to your lifestyle that you might not want to.
Regardless of where the stress is coming from, implementing relaxation techniques and prioritizing stress management can make a huge difference in your quality of life.
Mom learned very early on in her journey with PD how debilitating stress can be (it could cause her body to basically shut down) and avoided it if at all possible. Of course that was sometimes easier said than done. But the more she focused on doing what was best for her instead of worrying or stressing about the things that were going on around her, the better she was able to prevent her body from shutting down.
Below are some basic relaxation techniques. Choose those that work best for you. You might have to experiment with several techniques before you find an effective routine you are comfortable with. If you can, incorporate multiple practices into your schedule — and keep it up. Consistency and practice are crucial to successful stress management.
Take slow, deep breaths from your diaphragm. Breathe in through your nose and out through your mouth. Count to five as you breathe in and five as you breathe out. Do this several times until you begin to feel more relaxed.
Get in a comfortable position, close your eyes, and slowly relax different parts of your body, one at a time. Start from your head and work your way down to your feet. If you feel like you need more direction, search for progressive relaxation routines and guided meditations online.
It took almost 15 years of living with Parkinson’s for my mom to discover the power of music. She said it was a total surprise when she discovered how effective it was in getting her mobilized the first time she tried it.
When Mom was having an off period (reemergence of symptoms), she would play some favorite upbeat music and in a matter of a few minutes (and sometimes a few seconds) she would be upand moving. It was amazing to watch!
You can find many good books and recordings for meditation in bookstores and online. You may also find classes offered in your community.
Receiving a massage is a fantastic way to relax both body and mind. In addition to its soothing nature, a good massage may help to reduce any muscle tightness or pain you are experiencing. Mom loved massage, and she got one as often as she could.
Lucky for us, the importance of relaxation is widely recognized. Most bookstores and music retailers have a section on relaxation, and there are a multitude of resources available online that provide audio recordings and books that teach relaxation practices. There is also a booming industry of smartphone apps that provide guided meditations and relaxation tips and tricks. Try out a few and pick those that work best with your lifestyle.
Caring for someone with Parkinson’s can be both rewarding and challenging. Throughout the process you will most likely learn a lot about yourself and the person you’re caring for. Just remember throughout your caregiving journey to not forget about YOU. It’s imperative that you care for yourself to avoid burnout.
There are many ways caregivers can help make the life of a person with Parkinson’s easier. To start, my mom’s advice was to be supportive, encouraging, and positive. Providing your loved one with reassurance, especially in the early stages right after diagnosis, can really help. Remind them that PD progresses slowly in most people and that they can still live a full life.
Avoid stressful situations if at all possible. Also, try to talk in a “happy voice,” Mom would say, because people with Parkinson’s can hear (yes, not just see, but hear as well!) when you are stressed, and this stress really affects them negatively.
Because depression is so common with PD, it never hurts to offer a hug or two, or any kind of physical touch. Mom really appreciated these, I know.
Another thing is to be accessible. Ask if you can help, but don’t just assume they want help because they may not. Allow your loved one to do things for themselves, even if it takes longer. You may need to break tasks down into easier steps if they are having trouble. Just remember to focus on their successes, not their failures.
One very important thing to keep in mind as a caregiver for someone with Parkinson’s is that patience goes a long way. You need to remember that things will often take longer than they might have before, and trying to rush someone with PD will only get them frustrated and stressed and slow them down even more.
Always PLAN AHEAD and allow extra time for things. Mom loved to shop, and some days we could get ready in 15 minutes to go to the mall, while other times it took an hour. “It’s okay,” we’d
tell her, “’cause the mall ain’t goin’ nowhere!”
And speaking of planning ahead: If your loved one is no longer able to drive, you may want to help them plan alternative means of transportation. There are several options out there, including public transportation, ride sharing, and community shuttle services.
Scheduling is also important, especially when it comes to medications and meals. Because some PD meds need to be taken at specific times before and after meals, it’s very helpful to establish a medication and meal schedule so it becomes routine.
One thing with regard to mealtimes, especially if your loved one has trouble with chewing or swallowing, is that you may want to learn the Heimlich maneuver. This is used to dislodge food stuck in the throat if a person is choking and could be a lifesaver.
Finally, you may want to consider exercising with your loved one to help them stay motivated. Exercise is very important for the health and state of mind of both of you.
There are many resources available for caregivers, but the best place to start is with your national Parkinson’s foundation or society. You can find them online, and they can also direct you to your local chapter, where you can find out about any support groups that may be in your area. The next place to try is your local newspaper for community announcements of meetings for caregivers.
You can find more information on caregiving for people with Parkinson’s in the companion to this book, Everything You Need to Know About Caregiving for Parkinson’s Disease.
You can get 30% off of The Complete Guide and Everything You Need to Know About Caregiving by ordering from our website and entering the discount code PURDUE30.Filed under: PUP, Uncategorized if(!is_single()) echo "|"; ?>