The “Me too” disease states of Parkinson’s

Often Parkinson’s does not come alone. Other disease states have been known to present themselves during the course of Parkinson’s. The two most common that people tend to struggle with are anxiety and depression or mood disorders. These effects of Parkinson’s are called the non-motor symptoms according to the Davis Phinney foundation. Unfortunately the effects that Parkinson’s has on mood are often over looked because it is a subjective symptom (no way to truly measure the way someone is feeling quantitatively). Anxiety is usually the feeling of nervousness, worrying, or feeling jittery, while depression is described as the feeling of ongoing hopelessness and overwhelming sadness. In Parkinson’s patients these symptoms often stem from the decreased dopamine levels as well as the use of the different prescriptions that Parkinson’s patients are on. Although it is often uncomfortable to talk about these symptoms, they can often be treated through therapy or medications. If you are feeling like this may apply to you or a loved one it is best to talk with your doctor and know that there are options to minimizing these feelings. A link is provided below that gives a better overview and understanding of these symptoms.

Parkinson’s Disease Foundation: http://www.pdf.org/depression_pd

 

 

Rise to the Challenge: Beat Parkinson’s Through Supporting Events

Are you interested in supporting the Parkinson’s disease community?  If so, you are in luck.  There are many events across the nation that allow you to become involved These events all help not only raise money for Parkinson’s disease, but also help raise awareness.

Examples of events that cater to active people include races/walks, ironman races and classes such as boxing. You might want to participate in a relaxed event so you can partake in  bingo, pancake sittings, Foxtoberfest, and music concerts

Supporting Parkinson’s events helps bring awareness and understanding of the disease and helps us to create a united front to combat against Parkinson’s. We encourage you to take a look at these different Parkinson’s events and take action. Start small and look at events close to home and maybe venture out a little more as you get more involved. Feel free to check out this small list of events to get started: 

September:

  • Poker for Parkinson’s: Meridian, ID, September 23, 2016: https://www.eventbrite.com/e/poker-for-parkinsons-tickets-27641913708?aff=es2
  • Jameson Horns Run for Parkinson’s: Chicago, IL, September 25, 2016: http://www2.michaeljfox.org/site/TR/TeamFox/TeamFox?px=2503659&pg=personal&fr_id=1890
  • UNB Walk for a Cause: Fredericton, NB, September 25, 2016: http://www2.michaeljfox.org/site/TR?fr_id=1890&pg=personal&px=2474842

October:

  • Exercise to Defeat Parkinson’s 2016: Irvington, NY, October 2, 2016: http://www2.michaeljfox.org/site/TR/TeamFox/TeamFox?pg=team&fr_id=1890&team_id=19074
  • I know Karate- These are the Days EP: Vancouver, BC, October 3, 2016: http://www2.michaeljfox.org/site/TR?fr_id=1890&pg=personal&px=2513599
  • Team Danny Boy Golf Tournament: Coventry, CT, October 8, 2016: http://www2.michaeljfox.org/site/TR?fr_id=1890&pg=personal&px=1006090

November:

  • Foxtoberfest!Weymouth, MA, November 5, 2016: http://www2.michaeljfox.org/site/TR?fr_id=1890&pg=personal&px=1821945
  • TKE Pancakes for Parkinson’sOxford, OH, November 5, 2016: http://www2.michaeljfox.org/site/TR?fr_id=1890&pg=personal&px=2514370
  • Back to the Future MatineeBryn Mawr, PA, November 12, 2016: http://www2.michaeljfox.org/site/TR?fr_id=1890&pg=personal&px=2407051
  • 2nd Annual Turkey Trot for Parkinson’s: Lorton, VA, November 24, 2016: http://www2.michaeljfox.org/site/TR?fr_id=1890&pg=personal&px=2191057

December:

  • Midnight in Paris: New Year’s Eve Party to Cure Parkinson’s Disease: Chatsworth, CA, December 31, 2016: http://www2.michaeljfox.org/site/TR?fr_id=1890&pg=personal&px=2462930

Michael J Fox Foundation Event Link: https://www.michaeljfox.org/foundation/events/

Davis Phinney Foundation events: 

http://www.davisphinneyfoundation.org/events-list/

 

 

 

5 Things Parkinson’s Patients Must Do to Prepare for a Hospital Stay

Hospital stays can be detrimental to Parkinson’s patients’ health.  According to statistics from the National Parkinson’s Foundation, 3 out of 4 Parkinson’s patients do not receive their medications on time which can be extremely harmful.

Here are 5 things to do in preparation for your visit in the hospital:

1.       Notify the hospital that you have Parkinson’s disease. Make sure that all of the doctors working with you in the hospital are aware that you have Parkinson’s prior to your hospital stay.  If you find yourself in the hospital due to an emergency then make sure that you and your caregiver tell the nursing staff immediately upon arrival.

2.       Alert the staff and doctors that you must take your medications on time. Parkinson’s patients absolutely must take medication on time.  There are adverse effects that occur when a patient goes off of their schedule, but many hospitals mandate that patients stop self-administering drugs. Make sure that the nurses and physicians know about your schedule and don’t feel shy about speaking up when it is time to take your medicine.

3.       Keep your neurologist or primary care doctor informed. While you will receive care from the physicians and nurses you will want to notify your neurologist and/or primary care doctor of your hospital stay. Ask if your regular physician can send your medical records to the hospital so that the staff is aware of your disease. Remember to follow up with your physician after your hospital stay to keep them posted on your health.

4.       Ask for an Aware in Care kit. The National Parkinson’s Foundation created a comprehensive and convenient kit that was made specifically for Parkinson’s patients for emergency situations. The kits are free and available through the Foundation.

5.       Recovery properly and under supervision. One of the most important things to focus on is the recovery period after a hospital stay. Make sure that you are following the hospital physician’s order and follow up with your regular physician after your hospital stay. 

9 Tips on Meditation for Parkinson’s Patients

Meditation is a practice that has been proven to reduce stress and anxiety.  Minimizing stress levels for Parkinson’s patients is essential as research shows the detrimental effects of stress that lead to pronounced and frequent symptoms.

Australian researchers found that meditation reduced anxiety, depression, and impairment due to postural instability, gait, and rigidity.  You can read their research here.

Check out these 9 tips to start you on your way to developing your meditation practice:

1.     Begin: There is no time to start like the present! Don’t wait for the perfect time to begin your practice.  Why don’t you start right after you read this post?

2.     Breathe!: Breath is essential in any meditation practice.  It is recommended to utilize diaphragmatic breathing which means breathing deeply from your belly and exhaling through the nose.  Concentrate on your breath as you let go of your stresses.

3.     Don’t judge yourself: Starting a new routine can be challenging, but it is important to not judge yourself as you engage in your practice.  Some days are better than others but it is essential that you refrain from judging yourself.  

4.     Complete silence is not a requirement:  I understand how difficult it can be to find a place with complete silence where you can meditate.  Luckily it is not essential to practice in complete silence. You only need to find a place where you can concentrate enough

5.     You don’t have to rely on one position:  Some people prefer sitting with crossed legs on the floor; however, this position often does not work well for Parkinson’s patients.  Don’t worry, you can choose any position that suits your needs.

6.     Remember the benefits of meditation: It is often difficult to maintain a new routine, but remind yourself about the research that proves the positive and important benefits that meditation brings.

7.     Keep trying: Challenges and set backs are disheartening, but don’t let temporary failures discourage you from mediating.

8.     Length:  Don’t be intimidated by the length of time that you feel you need to dedicate to your practice.  Start with 10 minutes and build from there.

9.     Take your practice everywhere: Meditation can be done anywhere and anytime.  Try practicing in unconventional places.  That way you will be able to take your stress-relieving practice anywhere that is needed.

My Story as a Child Caretaker for my Mom, a Parkinson's Disease Patient

One of my first memories of my Mom was one of me as a toddler stepping on her toes so that they would not curl up as they often did during the day.  I had no idea why her toes curled, but I remember feeling a strong urge to help and comfort her.  

Swimming lessons with my Mom...I was about 1 year old in this picture. 

Swimming lessons with my Mom...I was about 1 year old in this picture. 

My name is Courtney Williamson, and I have 25 years of experience taking care of my Mom who was diagnosed with Parkinson's disease when I was a little girl.  Parkinson's disease is a neurodegenerative disease that impairs movement, hence, my Mom had difficulty controlling the movement in her toes.  The disease eventually impacted every part of her body and everyday tasks became increasingly difficult for her. 

Living with and caring for a Mom with such a debilitating disease had its challenges and often times people would express their sorrow for me and my family.  However, my Mom was a Christian and believed in God's healing hands and His ability to comfort and protect.  Much of my family's journey with Mom taught us such valuable lessons---lessons that I intend to share with the world. 

In 2014, I developed a product for my Mom to help her with her posture and balance.  The Calibrace+ was born out of my collaborations with biomedical engineers at Carnegie Mellon University.  I spent my time working on research for my Ph.D. at the Tepper School of Business while contributing to the designing and engineering work that would ultimately lead to a Medicare approved and FDA registered product commercially available to Parkinson's patients with postural instability and the 'Parkinson's stoop' that is so familiar to patients. 

This blog is intended to share my experience as a caregiver for a Parkinson's patient.  I will provide weekly tips, stories, and highlight events that I feel could be of interest to you.  

I am thrilled to have the opportunity to engage with you about Parkinson's disease as the disease has had a tremendous impact on my life and influences the lives of 10 million around the world.  I hope that we can develop a community where we can share information and support one another. 

With Love,