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You’ve Been Diagnosed with Parkinson’s, Now What?

youve-been-diagnosed-with-parkinsons-now-what

You’ve Been Diagnosed with Parkinson’s, Now What?

Written by Tom Sheppard and Lauren Simmons

If you’ve received a diagnosis of Parkinson’s, you may be feeling overwhelmed, devastated, angry, confused or all of the above. We felt the same way when we heard our doctors say, “You have Parkinson’s.”

You wake up one day thinking about your grand plans for the future, and the next you realize your future is probably going to be very different than what you had imagined.

For many, a period of grief follows the diagnosis. Allow yourself the time to grieve. You deserve that. However, you also deserve to live well with Parkinson’s today. That’s why we put this list together for you. With over seven years of experience of living with Parkinson’s between us, we wanted to offer 20 of the most helpful actions we’ve taken along the way.

Within this list, we’ve also included a wide range of resources from the Davis Phinney Foundation and elsewhere so you can dive deeper into any topic that interests you. We recommend you bookmark this page or save this link so you have it at your fingertips when you need it.

We know that no two people with Parkinson’s are the same; so, take what works and leave the rest. And above all, know that as difficult as this road can be at times, it is possible to live well – to live better than well – with Parkinson’s.

#1 – Take Action to Improve Your Quality of Life

When you have Parkinson’s, staying healthy can feel like a full time job. It takes a lot of time and energy to exercise, eat well, sleep, track your medications, see your doctors and get the overall care you need; however, the payoff is well worth it to feel better.

The Every Victory Counts® manual includes over 34 worksheets to help you keep track of everything and can be very helpful along the way.

As you’re probably starting to learn, Parkinson’s is different for everyone; therefore, learn to be an advocate for your own experience every step of the way.

 

#2 – Work with a Movement Disorder Specialist

One of the best pieces of advice we were given early on was to make sure we worked with a neurologist who has specialized training in movement disorders. These clinicians are known as movement disorders neurologists or specialists. There are many great neurologists who see people with a wide range of neurological conditions, but do not treat many people with Parkinson’s. A movement disorder specialist is an expert in the issues that people with Parkinson’s face every day and they’re going to be able to give you the best care possible.

If you don’t have a movement disorder neurologist in your local area, many people with Parkinson’s travel to see one in a different city once or twice a year. This doesn’t mean you have to end your relationship with your current doctor. Rather, getting a second pair of eyes on your condition can be a positive addition to your ever changing care plan.

Here’s a great resource on how to prepare for your first movement disorder specialist appointment.

 

#3 – Keep a Journal of Your Medications and Symptoms

One of the things we’ve learned on this journey is that as Parkinson’s progresses, there’s a lot of tweaking of medication that needs to happen. For example, you may find that a dose that used to provide you with relief for 12 hours, now starts to wear off after eight. By keeping track of your medications and how you’re feeling with each one, you’ll be able to catch problems more quickly and your doctor will be able to adjust them so you get the help you need.

If you’re wondering how soon you should begin taking Parkinson’s medication, this video is for you.

If you’d like to know more about Parkinson’s medications in general, visit here and here.

Or you can watch Graham Hughes of St. Vincent’s University Hospital in Dublin, Ireland offer essential information on how to get the most benefit from your Parkinson’s medications here.

 

#4 – Ask Questions

Part of being an advocate for yourself is asking questions. You can’t ask too many. And if you have a doctor who’s not willing to take the time to answer them, it might be time to look for a new one.

We write down questions as we have them – because it’s so easy to forget them – and then take them to appointments. Even better, sometimes we email the doctor a list of questions a day or two before the appointment so that he knows what’s going on and he and his staff have time to prepare before we even come in. Again, this speaks to the importance of having a doctor who is a true care partner, who is open to this type of communication and who wants the very best for you.

Here’s a fabulous video on how to communicate with your doctor.

In addition, you can also print a copy of this “Medical Summary for Your Doctor Appointment” worksheet from here to help you prepare for your next appointment.

 

#5 – Accept Your Diagnosis

We know that saying, “Accept your diagnosis” is easier said than done. At first we didn’t want to accept it either. We don’t know anyone who does; however, denial and apathy are your enemy in this fight. And if you stay there, you will likely be slower to begin taking the actions that truly can help you live better today. You have Parkinson’s and unfortunately that’s not going to change. However, how you manage it is completely within your control.

 

#6 – Make Peace with Your Medications

Like it or not, in order to control your symptoms, you’re going to have to take medication. The sooner you make peace with that, the sooner you can start to feel relief because the medications do provide relief. As soon as they don’t, consult your doctor.

 

#7 – Exercise More, Harder and Often

There’s more and more evidence that exercise – specifically intense exercise – slows the progression of Parkinson’s.

The great thing about exercising is that you don’t have to force yourself into doing an exercise activity you hate. There are lots of options. Just find something you love doing like dancing, cycling, walking, hiking, swimming, yoga, tai chi or anything else that gets your heart pumping. Rock Steady Boxing is a leader in helping people with Parkinson’s and boxing not only works nearly every muscle in your body, but it’s a great way to relieve stress, too.

Regular exercise may very well be the best thing you can do to help slow the progression of Parkinson’s. It has certainly been true for us.

 

#8 – Eat Well

Take a good look at your diet and think about consulting a nutritionist or functional medicine doctor. What you feed your body, you feed to your brain as well. Eating healthier may decrease inflammation and give you more energy, which in turn may help with your Parkinson’s symptoms.

You will likely get a wide range of advice on what you should and shouldn’t eat from well meaning friends and family. Just as every person with Parkinson’s experiences Parkinson’s differently, there’s not one diet for everyone. Work with your doctor and pay attention to how you feel when you eat certain foods.

Dialing in your nutrition can be a frustrating experiment at first, but the impact it will have on your health and well-being is significant.

Here are a few resources if you’d like to know more:

 

#9 – Sleep

Lack of sleep, interrupted sleep and insomnia can be very frustrating symptoms of Parkinson’s. But sleep is absolutely crucial in helping to decrease stress, increase energy and help overall well-being so you want to do everything you can to establish healthy sleeping patterns. If you aren’t sleeping well, talk to your doctor about it.

 

#10 – Relieve Constipation

Constipation is one of those issues that nobody wants to talk about; however, research shows that 60%+ of people with Parkinson’s are dealing with it. If this is a problem for you, consider making some dietary and lifestyle changes to help improve your constipation. You can get a constipation worksheet that suggests dietary changes and medication recommendations here.

 

#11 – Protect Your Skin

Take care of your whole body, including your skin.  People with Parkinson’s have a higher rate of melanoma than those without. Be aware and see your dermatologist at least annually for a checkup. Your entire body deserves your attention.

 

#12 – Learn About Deep Brain Stimulation (DBS)

Deep Brain Stimulation involves surgically implanting a neurotransmitter that sends electrical impulses to specific areas of your brain. This procedure has helped many people with Parkinson’s reduce symptoms such as tremor, rigidity and bradykinesia. And it may also reduce the number and amount of medications that are needed. It’s not right for everyone, though it can be life changing for those who meet the criteria. If this is something you’re curious about, have a conversation with your movement disorder neurologist at your next appointment.

Download the “Deep Brain Stimulation (DBS) Self-Assessment” here.

 

#13 – Research

The Internet can be a scary place for people with Parkinson’s. There’s a lot of great information out there but also a lot of misinformation and horror stories. Always consider the source when you’re researching and look for peer reviewed articles and articles written by well established experts in the field. I like to start with medical schools, top research organizations and organizations that specialize in Parkinson’s.

 

#14 – Consider Complementary Therapies and Alternative Practices

Be open minded. Do your research and consider complementary therapies and alternative practices such as medical marijuana, massage, acupuncture, acupressure, reiki, tai chi, yoga, prayer, meditation and more.

Also, don’t forget to research the downsides to alternative treatments as well. There are plenty of people who have jumped on board with unregulated supplements that promise the moon only to find out they made them feel worse because of the interactions they had with their other medications. Talk to your doctor about everything and make sure you’re cleared before you start something new.

 

#15 – Get Involved

Join a support group or get involved in your Parkinson’s community, even if you don’t want to.  Soon you’ll find that these people become some of your best friends. Talk with other people with Parkinson’s whenever you get a chance because they’re a wealth of knowledge and they can learn from you, too. You might even end up being the inspiration they need.

 

#16 – Form a Care Team

Recognize that Parkinson’s isn’t just happening to you. It’s also happening to your spouse, kids, family and friends and some of them may need help through this new reality as well. Your extended care team might include your neurologist, primary care doctor, functional medicine doctor, family members, fitness trainers, physical therapists, occupational therapists, speech therapists, massage therapists, support group, etc. Your care team might also include people your primary caregivers like your spouse or kids rely on when they’re feeling tired and overwhelmed.

These people are going to play critical roles along your journey so choose them well.

 

#17 – Accept Your Limitations

This may be the most difficult one of all, especially if you lived your life up until your diagnosis believing limits were all in your head and you could do anything you wanted if you just put your mind to it. Unfortunately, Parkinson’s comes with limitations and the sooner you recognize what yours are, and the faster you ask for the help you need, the sooner you’ll be able to live well.

It’s true that you may not be able to walk as quickly or as steadily as you did before, but there are things you can do to help you lessen the chance of falling and getting hurt such as using a cane or getting a service dog. With assistance like this, maybe you’ll be able to walk further and longer than you had before.

Or maybe you won’t feel comfortable riding your bike outside in the winter like you used to, but you end up riding more miles than you ever thought possible on a stationary bike and accomplishing big dreams.

Perhaps you’ll even have to adjust your work schedule or leave your career completely; however, maybe the time and space that comes with that change will expose you to new adventures you never would have encountered if you didn’t have Parkinson’s.

Parkinson’s may bring to light some new limitations you never asked for, but it also may pave the way for new possibilities that are exciting, joyful and life affirming as well.

 

#18 – Maintain Your Cognitive Skills

While the effects of Parkinson’s on movement are often the most visible symptoms, other impacts of Parkinson’s not related to movement, like cognitive challenges, can sometimes have an even greater effect on your quality of life. Statistics show that more than half of people with Parkinson’s will experience some kind of cognitive change throughout the course of the disease, ranging from very mild to acute.

The good news is that there are some actions you can take to help slow cognitive decline. You can do things like brush your teeth, color or play Wii games like tennis with your non-dominant hand. You can try crosswords, Sudoku, puzzles, scrabble or reading. Learning a new skill, which involves reasoning and problem solving, has also proven to be one of the most effective strategies for maintaining cognitive strength.

 

#19 – Socialize

Stay involved in your world! Socializing is absolutely critical to living well with Parkinson’s.

In this video, Dr. Condeluci talks about the importance of social capital and the value that relationships bring to our lives. One of the most powerful pieces of research he cites was conducted by Robert Putnam, a professor of public policy at the Harvard University John F. Kennedy School of Government and author of Bowling Alone. Putnam discovered that if you don’t belong to a community, and you decide to join one, then you cut your risk of dying in half over the next year. Similarly, an AARP study concluded that long term isolation is the equivalent of smoking 15 cigarettes a day.

If you’d like to get involved in a Parkinson’s community in your area, connect with one of the Davis Phinney ambassadors. Their ambassadors are volunteers who share resources and information throughout their local and regional communities to help people take action and improve their quality of life with Parkinson’s.

 

#20 – Don’t Wait to Live Well

If there’s one thing to know about Parkinson’s, it’s this: there’s a lot we don’t know. A cure is being worked on, but it may be far in the future.

So for now, Parkinson’s is a life sentence… but it is not a death sentence. Your future may look different than you had planned, but you still have a future. Make the quality of the journey the best it can be and be thankful for every day.

 

Tom Sheppard is a Parkinson’s advocate and believes intense physical training has radically improved his quality of life. He also shares a love of Rock Steady Boxing with his co-author and Rock Steady Boxing coach, Lauren.  She writes about living with Parkinson’s here.

 

Find More Practical Articles Like This

Much more can be found in a powerful new edition of Davis Phinney Foundation’s free Every Victory Counts® manual. The Every Victory Counts manual gives people living with Parkinson’s, their care partners and their family members the tools they need to take control of their own Parkinson’s treatment through a proactive approach to self-care.

It’s jam-packed with up-to-date information about everything Parkinson’s, plus an expanded worksheets and resources section to help you put what you’ve learned into action. Color coding and engaging graphics help guide you through the written material and point you to complementary videos, podcasts and other materials on the Every Victory Counts companion website. And, it is still free of charge thanks to the generosity of our sponsors.

Request your copy of the new Every Victory Counts manual by clicking the button below.

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