Shake, Rattle and Roll

Cruising with Parkinson's

Press Release

Contact: Amanda Smith Phone: (941)870-4438

FOR IMMEDIATE RELEASE July 27, 2011

Past Cruiser Endorses

Parkinson Research Foundation (PRF)

Patient Educational Cruise Program;

Encourages Patients to Attend

Upcoming PRF Cruise in January 2012

SARASOTA, FLORIDA - PRF is hosting its fourth educational cruise from January 8 – 15, 2012. Cruisers will set sail out of Port Canaveral, Florida on Royal Caribbean’s Freedom of the Seas to embark on a seven-night Western Caribbean adventure.

The Parkinson Research Foundation (PRF) developed an educational cruise program to help Parkinson patients, care partners and their loved ones learn about Parkinson’s and connect with fellow patients from across the world. Each PRF cruise boasts a unique faculty of movement disorder specialists, giving cruisers unrivaled access to prominent experts in the Parkinson field.

After three successful patient cruises, PRF has earned a precious asset – the endorsement of a Wellsphere-certified Top Health Blogger, Kate Kelsall. Ms. Kelsall is celebrated throughout the PD community for her unapologetic candor when writing about Parkinson’s. Updated regularly, her blog provides an endless source of information about PD and a personal perspective on the disease.

She recently posted an entry on her blog debunking cruise concerns often cited by Parkinson’s patients. A past PRF cruiser, Ms. Kelsall will join PRF once again for the upcoming cruise in January 2012.

Ms. Kelsall wrote: “Cruises have now become an appealing vacation option for my husband and me. After cruising on two of the Parkinson Research Foundation’s educational cruises, my husband and I found the seminars and classes to be informative and practical, particularly Mary Spremulli's Voice Aerobics program with useful tips that can be implemented in everyday life.”

The January 2012 cruise program will have a “1950’s” theme, complete with sock hop dance parties and costume karaoke events. The educational program on board will include presentations by prominent Parkinson’s disease physicians and clinicians, including Dr. Juan Sanchez-Ramos, Mary Spremulli, Dr. Kathleen Clarence-Smith, Bill Guthrie, Eman Nakshabendi, Dr. Thomas Chase, etc.  Patients, care partners and loved ones can participate in support group meetings, exercise classes and wellness seminars. 

To read Kate Kelsall’s entire post about conquering cruise phobias and crusing with PRF, visit http://katekelsall.typepad.com/my_weblog/2011/07/conquering-cruise-phobias.html

For more information about PRF and the PRF Educational Cruise Program, contact Lynne Henry by phone at (941) 870-4438 or via email: info@parkinsonresearchfoundation.org or log on to www.parkinsonresearchfoundation.org. 

About the Parkinson Research Foundation (PRF)

The Parkinson Research Foundation (PRF) is a nonprofit health organization providing Parkinson’s patients with access to research, education, information and advocacy. PRF distinguishes itself from other Parkinson organizations by focusing on education and awareness, not only for patients, but also for their families and caregivers. PRF explores a variety of issues affecting the care and treatment of Parkinson’s disease, with a goal of bringing new advances in treatment to the forefront, making this knowledge available through seminars and conferences. The money raised by PRF funds research, information programs, and advocacy/awareness efforts that will support the over one million people with Parkinson's disease in communities across America.

For more information, please visit PRF online at: www.parkinsonresearchfoundation.org

 

Confused about Stages?

I never could grasp the concept of stages in Parkinson’s Disease. With the symptoms of Parkinson’s varying so much from patient to patient, I couldn’t determine what stage of Parkinson’s I was at and even if I did know, how did this impact how long I would live and how well or poorly I would function until I die.

Finally, someone addresses this important topic in the following article. I highly recommend it.  

Staging is Not Important in Evaluating Parkinson's Disease

By Joseph H. Friedman, MD, author of Making the Connection Between Brain and Behavior: Coping with Parkinson's Disease

From: APDA Newsletter Spring 2011

To read article, click on the following:

http://apdaparkinson.org/data/NewsLetterUpload/2011_Spring_News.pdf (article is on page 1, 6, and 7 of newsletter)

Comments on article on staging:

I would like to add that it is especially not relevant for DBS patients because it heavily relies on gait and balance, and DBS might not be very helpful with this issues.
Olga Klepitskaya, MD, Department of Neurology
University of Colorado at Denver Health Sciences Center

 

 

 

 

Conquering Cruise Phobias

When I was a non-cruiser, I never thought I would like cruising. I was fearful of being confined, cooped up, and claustrophobic. I was worried about getting seasick. I longed for an active vacation of riding bicycles and hiking mountains. I didn’t want to get fat eating meals round-the clock. I dreaded being around all those old people.

However, cruises have now become an appealing vacation option for my husband and me. After cruising on two of the Parkinson Research Foundation’s educational cruises, my husband and I found the seminars and classes to be informative and practical, particularly Mary Spremulli's Voice Aerobics program with useful tips that can be implemented in everyday life.

We hope to go on the next educational cruise sponsored by the Parkinson Research Foundation from January 8-15, 2012 (see below).

 

For details, check out info at: http://www.parkinsonresearchfoundation.org/cruise.aspx

Educational cruises are often ideal vacations for those with Parkinson’s and their families. Participants can be as busy or as leisurely as they choose. There is an activity for every member of the family. While the patients are attending educational seminars, their family members can enjoy the same or other educational seminars or choose from the many activities on the cruise.

Other non-cruise tours require travelers to constantly change hotel rooms as they travel.  On a cruise, it is not necessary for cruisers to schlep their luggage from place to place and pack and unpack until they depart.

Scooters can be rented by those who have difficulty getting around on foot.

Some cruise phobias and solutions I’ve discovered to conquer them include:

Phobia: The cabin is tiny. It’s true that most of the average cabins are smaller than most of the average hotel rooms. The cabin on our last cruise had a large bed in a tiny room. And I felt claustrophobic, like I was in a MRI machine. And there were no port holes with views of the ocean which resulted in feeling confined. It was necessary to synchronize our actions—one of us couldn’t open the closet door while the other was going in and out of the bathroom.

Solution: Pay for a larger cabin with a view. Handicapped accessible cabins (which are usually larger) are available for those in need of such accommodations.

Phobia: Many people are fearful of seasickness and afraid of spending the entire time hanging over the toilet being seasick. Cruise ships are usually scheduled during times of calm waters and warm seas. Because of the large size of the cruise ships, they are usually stable.

Solution: There are many over-the counter and prescription remedies for dealing with seasickness.

Phobia: Too much food and gaining weight

Solution: Choose sit-down dining instead of cafeteria-style meals to prevent over-eating. If possible, walk the stairs instead of taking the elevators and walk on the top deck at sunrise to wear off some of the calories from the frequent and heavy meals.

Phobia: Pre-assigned dining times and dining mates

Solution: If you dread the thought of sitting with the same table full of strangers night after night, before booking your cruise, talk to your travel agent about flexible dining and seating arrangements.

And my GREATEST FEAR is being surrounded by old people with Parkinson’s. It forces me to look at the realities of aging with Parkinson’s. It’s true that many cruisers are seniors, and a Parkinson’s cruise will tend to attract an older population. But right beneath those aging exteriors, you will find inspiring persons with amazing life experiences. And at age 61, I have become an inspiring senior living with Parkinson’s AND with amazing life experiences to share.

So we’re choosing an educational cruse as a fun way to learn as well as enjoy the fresh ocean air, watch glorious sunsets, and relax in the cool sea breezes with miles and miles of ocean as far as we can see. As for being around old people with Parkinson’s, these former strangers may become friends who both inspire and amaze us.

Happy Cruising!

Fear makes strangers of people who would be friends.          Shirley MacLaine