Chronic Disease Changed Their Lives and Careers

As 2013 draws to a close, and with it the listing of news makers that died this past year, I wondered about celebrities living with chronic conditions and how it may be impacting their careers. 

For actress, Kathleen Turner, who is living with serious rheumatoid arthritis, the rumors about her drinking too much were thought to be a better option as people in show business hire drunks all the time, but not people who are sick. Like many with chronic conditions, they not only fear loosing work and doing the things they love, but they also are in the public eye, which can be a blessing as well as a curse. 

 It is interesting to read how various people deal with their respective conditions. Overwhelmingly they identify two key changes they've made to improve their health-diet and exercise. Religion, spiritual belief, humor, meditation and other activities are also frequently mentioned. Some have chosen to become involved in their condition specific organization and a number have developed websites to raise funds and awareness. For some,  their diagnosis, combined with their celebrity status, is a compelling reason for them to disclose their health issue and to do something to improve not only their lives but others who are similarly affected. Many view the diagnosis ultimately as an important point in their lives, which helped them change for the better.

• Dan Aykroyd (Actor) Asperger’s syndrome. He was told he had Tourette as a 12 year old. Among his obsessions are ghosts and law enforcement. He is also a spiritualist and so no surprise, Ghostbusters III will start filming in 2014.

• Toni Braxton (Singer, actor): She has a variety of health issues including lupus and small vessel disease. Her youngest son was diagnosed with autism and Braxton is very involved with Autism Speaks.

• Cher (Singer, actor) Epstein-Barr Virus: She has had to put her career on hold several years, including a three period staring in 1992. However, it hasn’t kept her from having a number one hit in five different decades.

• Sinead O’Connor (singer) Fibromyalgia and bipoloar disorder

• Missy Elliot (Hip Hop artist) Graves’ Disease and hypertension: Has difficulty with driving and other everyday tasks but through treatment is back recording and writing. She believes that God had a plan for her by “keeping her out” of the business so she could come back with something new and different.

• Michael J Fox (Actor) Parkinson’s Disease:  Diagnosed in his 30’s, he and Mohammad Ali are the most frequent faces associated with the disease. He continues to act and run the Michael J. Fox Foundation for Parkinson’ Research. 

• David Garrard (Quarterback for the Jacksonville Jaguars) Crohn’s Disease. Appears in TV commercials for “In the Zone for Crohn’s.”

• Tim Howard (Goalie for the US Soccer Team, Manchester United and now Everton) Tourette Syndrome: Diagnosed at 9, he has learned to manage his condition and is a patient advocate for those living with the condition.

• Kareem Abdul Jabbar (Lakers Basketball player) Chronic myeloid leukemia.

• Nick Jonas (Youngest member of the Jonas Brothers) Type 1 Diabetes: He is now a spokesperson for the Diabetes Research Institute

• Diane Keaton (Actor) Asthma

• Greg Louganis (Olympic Diving gold medalist) HIV/AIDS No longer competing, Louganis is an advocate for those who are gay and HIV+

• Thomas Menion (Mayor of Boston) Crohn’s Disease

• Jillian Michaels (The Biggest Loser trainer) Polycystic Ovary Syndrome and Endometriosis

• Jack Osborne (Reality TV , son of Sharon and Ozzy Osborne) Multiple Sclerosis: Since his diagnosis, he has competed on “Dancing with the Stars,” and has established the website You Don’t Know Jack about MS.

• Prince (Singer)  His eccentric personality developed as a cover up for epilepsy  he’s had since childhood.

• Kathleen Turner (Actress): Rheumatoid arthritis . In 1992, after “Serial Mom,” I got very ill with rheumatoid arthritis. For several years, that was my primary concern—to battle that disease, to be able to keep moving. Nine operations and two titanium knees later —and missing many joints in my feet and other areas—I am moving and working very well..... When I was so ill, my confidence in myself was terribly shaken. I relied very much on my physical ability to be the actress and woman I thought of myself. I’ve been regaining that. But, it took a bad hit. I’m still learning. I like flirting. I’m working on it. Entertainment Inquirer  “It’s important to me that people know they have options so they can get some relief from this debilitating disease,"

• Linda Ronstadt (Singer) Parkinson’s Disease

• Mathew Scheiner (musician Oberhofer, Tropic of Pisces, Mon Khmer) Hemophilia, Hepatitis C

• Seal (Singer) Discoid Lupus. The scars on his face are from the disease. Fans, curious about the scars, have learned about the disease.

• Patrick Spurgeon (Musician) End Stage Renal Disease

• Amy Tan (Author) Lyme Disease, which led to epilepsy. As noted in her on-line biography while not cured, her disease is medically managed, and her health, by her own new definition,  is excellent.  She now has a valid excuse why she cannot drive and must have her husband play chauffeur.

• Christy Turlington (Model) Emphysema 

• Hugo Weaving (Actor): Diagnosed with epilepsy when he was 13. It didn’t stop him from becoming a major actor, starring in such films as “The Matrix” and “Lord of the Rings.”

• Montel Williams (TV personality) Multiple Sclerosis: I could spend the rest of my life feeling sorry for myself as the victim of a tragic fate. Or I could view my illness as a call to action -- an opportunity to make a difference in the lives of millions who suffer from MS and their loved ones. In 1999, I went public with my battle against MS. Although I was warned that this disclosure could harm my career, I couldn't remain silent. I have one of the biggest mouths on this planet, and I decided to keep using it until everyone everywhere knows about MS, what can be done to fight it, and a cure is found. Williams is now the head of the Montel Williams Foundation raising money for MS research. 

• Williams sisters: (Tennis Pro) Besides all of the injuries from being a competitive athlete, both sisters have dealt with some form of chronic disease. Venus has Sjogren’s Disease and Selena has suffered from depression and a blood clot in her lung. Serena, at 32, the oldest woman ever, is ranked number one in the world and Venus ranks 47^th.

• Alexis Wineman (Miss America) Autism: Her platform as Miss America, crowned June 2012, was “Normal is Just a Dryer Setting: Living with Autism.”

 • Celebrities with Crohn’s Disease  

 • 8 Celebrities Touched by Lyme Disease 

 • 11 Celebrities with Mental Health Disorders 

• The Chronic: 10 Musicians with Ongoing Illness 

Take a Break: Relax

It’s Christmas morning, the beginning of a very busy day(s) for many people. Besides wishing you a Merry Christmas, below are some on-line resources (most have apps) to help you take a few minutes here and there and relax.  

• Calm 

• Do Nothing for Two Minutes 

• Fire Place live App 

• 3 Hours of Christmas Music with Fireplace 

Setting the Mood: The following sites provide sounds and pictures. 

• Rain for Me 

• Rainy Mood 

• Sound drown

• Nature Sound Player 

• Mood Turn 

 Games

• Into Time: Every time you click a square, the space will halve 

• Bubble Burst 

• Top 10 Most Relaxing on-line Casual Games 

Napping and Sleeping

• Sound Sleeping 

• Nap Sounds: Learn how to power nap

Since  Victorian Christmas has been the theme for the previous three "take a breaks," what better way to end this post then with Charles Dickens’ Carol Philosophy "a good time: a kind, forgiving, charitable, pleasant time: the only time I know of in the long calendar of the year, when men and women seem by one consent to open their shut-up hearts freely, and to think of other people below them as if they really were fellow-passengers to the grave, and not another race of creatures bound on other journeys."

Vitamins: To Take or Not?

Any place that sells health supplies generally has a large vitamin/supplement section, and at any given time, there will be several people standing around this area trying to determine what to buy. Is this necessary? Are the millions of Americans spending billions of dollars being misguided?

Depending on diagnosis, it is not uncommon for people with chronic conditions to be deficient in certain vitamins, and therefore may need supplementation. But, do you need a multi vitamin? If so, what kind? What about other vitamins?

This week, two new studies found no evidence that taking vitamins protected men’s brains or helped those who have had a heart attack. In the Annals of Internal Medicine editorial concerning these studies, the following was noted, "Evidence is sufficient to advise against routine supplementation." http://www.nlm.nih.gov/medlineplus/news/fullstory_143473.html

Some groups of people do benefit from supplementation. These include:

-    * Folic acid for women planning a pregnancy to reduce the risks of a neural tube defects (e.g. spina bifida)

-     *  People on a vegan diet may benefit from vitamin B12 supplements

-     * Those on long-term restrictive weight loss diets or people with malabsorption problems, such as diarrhea, celiac disease, cystic fibrosis or pancreatitis.

Some vitamins do not work, such as:

-     * Vitamin supplements do not help to prevent cognitive decline in healthy older adults. Canadian Medical Journal July 9, 2013 

-       * Ginkgo biloba does not slow down cognitive decline in older adults. http://nccam.nih.gov/research/results/spotlight/20091229.htm

-       *Taking Vitamin C will not prevent a cold.

Some vitamins can be harmful:

-      *  For people with HIV, taking St. John’s Wort to combat depression can reduce the effectiveness of several types of anti=HIV drugs by more than 50%.

-       * Vitamin E, considered to be a promising tool for cancer prevention, turned out to have the opposite effect. Men who took vitamin E were 17% more likely, not less, to develop prostate cancer.

-       * After years of telling women to take calcium, in February, the US Preventive Services Task Force recommended that postmenopausal women refrain from taking supplemental calcium and vitamin D. Not only did it not prevent fractures in healthy women, but several studies linked it to an increased risk of heart attack and death from cardiovascular disease.

Because people with chronic conditions may have a real need for vitamins and supplements, consider the following:

• To learn more about the various types of vitamins and supplements, check out Mayo Clinic Drugs and Supplements.  This is an easy site to understand what works, as they use a grading system of A-F with A being strong scientific evidence for this use and F being strong scientific evidence against this use.

• Tell your medical provider what vitamins/supplements you are taking.

• Condition specific organizations, (e.g. American Diabetes Association) are good places to learn what’s being tried in terms of supplements for your particular condition. 

• The best way to give your body the vitamins and minerals it needs is through diet. That noted, depending on condition, medications you are taking, and in the case of vitamin D- where you live, you may need certain supplements. Discuss this with your provider.

Additional Resources

• University of Maryland Medical Center’s Complementary and Alternative Medicine Guide includes guides for herbs and supplements. 

Take a Break: Victorian Christmas Food and Games

This is the third in the series on Victorian Christmas. See below for links to the other two "take a breaks."

After attending church, the family would return home to a table decorated with seasonal greens, flowers, the best dishes and table linens. While small gifts adorned the trees, the gift was actually the feast. After dinner, there maybe “parlor games,” such as charades, as well as fireworks.

If you’ve read or seen “A Christmas Carol” by Charles Dickens, you know that a goose is a must, along with a Christmas pudding, and some sort of drink. The serving of the pudding was one of the great rituals of the Victorian Christmas dinner; indeed it was almost as much a ceremony as the creation of the pudding. The plum pudding, made up of suet, bread crumbs, raisins, and spices, was a family effort. On Stir-Up Sunday at the beginning of Advent, each family member took a turn a beating the pudding, making a wish, and stirring clockwise for good luck. Then a ring, coin, or thimble was tossed into the batter. Until Christmas Day the pudding hung from a sack, then it was boiled in beef broth for eight hours. After dinner it was turned out on a platter, topped with a sprig of holly, set alight, and carried into the dining room. Victorian Christmas Dinner 

Below are a variety of recipes to help re create a Victorian Christmas feast. Least we forget, here is a link to make Christmas Crackers (Snaps),  which appear next to each person’s place setting.

• The Victorian Christmas Dinner: Original recipes from the Victorian era.

• Victorian Christmas Dinner: Includes an interesting pudding recipe 

• Menu from Godey’s Lady’s Book December 1890 

• Victorian Christmas: Food and Drink: Includes how to videos and recipes for mulled wine, mince pies, sugar plums, Wassail punch, turkey and stuffing, bread sauce, Christmas pudding. 

Once you and your guests are stuffed, it’s time for the parlor games.

• Victorian Christmas: Games and Activities

•Victorian Parlour Games

For more on Victorian Christmas, check out the following links in this series:

• Create a Victorian Christmas-Tree decorations 

• Celebrate Victorian Christmas -Wreaths, Swags and Gifts 

Unique Gifts for Caregivers

As a companion to the Unique Gifts for Patients post, and with the holiday season in full season, this is a good time to think about gifts for caregivers.  

 Keep in mind the following about the needs of a caregiver

• Time is their number one issue. Gifts that help them enjoy their free time or create some time are appreciated. While certain gadgets are wonderful gifts and time savers, many caregiver aren’t going to be exactly thrilled with an automatic pillbox as their Christmas or birthday present.

• While it may seem like a cute idea to give them a homemade coupon book offering various services, like childcare, trash removal, or lawn care, they aren’t going to be thinking about “redeeming” their coupon as it’s one more thing they’d need to keep track of.  If you want to offer a service that you think they need, make a card that let’s them know what you will do and when. Some examples:

-                                    “I am your snowplow man/woman for January and February.”

-                                    “Smith’s Lawn Service will cut your grass the 1^st and 3^rd Saturdays of the month for July,     August and September.”

-                                   “Annie’s Catering will provide dinner for you and your family on Monday nights for the month of January.” With this one, you can include a “menu” so they can “order” the dishes they would like to receive.

With the card, consider something small like a box of their favorite candy, an ornament for their tree, a tin of homemade cookies etc.

• Caregivers need to know they can depend on people. If you offer your service, be sure you show up and complete the task.

• They don’t always have the ability to adjust their schedule to do various things, in fact some can’t leave their charge unless there is a sitter or an attendant that can take their place. If you give a gift that will take them away from their charge, such as theater tickets or a spa weekend, line up a sitter for the time they will be gone.

• Isolation and loneliness can be real issues for many caregivers. While they may be dealing with lots of people, such as medical providers, personal care attendants, aids etc., their life may feel like it’s home, doctor’s office, pharmacy and home again. Giving them a chance to be with friends for an evening-be it at someone’s house, a restaurant or at the theater- is a wonderful gift.

• Finances are often very tight, so if you are comfortable doing this, help them by paying off some of their bills. Giving them cash to do this is not recommended, since too often cash can be spent for other purposes. Writing the check to the utility company or other business is a better way to go. This is also where gift cards come in handy. Gas, grocery store and pharmacy cards are always useful. 

• They need to be reminded that they are important and special. When you give gifts that are more about the person they are caring for-such as automated pill boxes-you aren’t really recognizing the caregiver for themselves.  Caregivers spend a large part of their day giving, so help them recharge by providing a gift that is special and meaningful to them.  

• Unless they express specific interest, books and magazines about caregiving, or the particular condition a person is living with, are often never read. If you want to give a book, consider something that allows them to escape for an hour or two.

GIFT IDEAS

Electronics: There are a variety of items to choose from at all price points.

• Tablets: While many will already have a computer, tablets (e.g. iPad) are very handy and there are some androids for as little as $129. Consumer Reports December 2013 recommends the Amazon Kindle Fire HDX Tablet, which is selling for $230. 

• E Readers: Kindle or other electronic book devices are also user friendly and it allows them to have something interesting to read, particularly if they have to wait long hours at the hospital or health center. You can pick these up fairly cheaply as there are all sorts of deals on them at the moment. Amazon currently has a Kindle 6” for $89

• E Fitness: Fitting in exercising can be difficult. There are various electronic games such as Wii Fit and Dance Dance Revolution that will provide both entertainment and exercise. An exercise, yoga or Tai Chi video might also be appreciated.

• Streaming Media Players: They no longer have to miss their favorite TV program as an Apple TV or Roku allows them to download and watch various shows and movies using such websites as Hulu, Netflix, and Amazon Premium. Apple TV can be bought for as little as $85, while Roku is priced lower. Consumer Reports recommends Google Chromecast for $35. This does require some cables that may not make it as practical as the other options. 

• iPhone: Consumer Reports recommends the 16 GB, which will vary in price based on carrier. 

• MP3 Players: iPods are wonderful, particularly the iPod Touch, as they allow you to have your favorite music, as well as books on tape. Further, many libraries have free books you can download for two weeks at a time. While the smart phone and tablets are replacing the need for these devices, some people still prefer them.  

E-Gift Cards: For those caregivers already using tablets and smart phones, giving them an iTunes Gift Card makes it possible for them to download apps or music. Amazon also offers an Appstore gift card, which is good for those who have Android devices.

Pampering: Not everyone likes to be touched, so do some checking first to make sure they’ll appreciate one of the following:

• Spa: An afternoon, day or weekend

• Massage: Having a massage in their home.

• Hair Salon: Having your hair done can give a considerable lift.

• Pedicure/Manicure: These aren’t just for ladies.

Since these can be pricey, a group of friends can pitch in to make this possible.

Baskets: Baskets are an easy way to put together a variety of items around a theme. Some ideas to consider

• Bath/Spa: For those that love long baths, include such items as bath matt and pillow; special soaps; sugar scrubs; loofahs and other “scrubbing devices;” candles; plants; body lotion for after the bath and even a bottle of champagne.

• Teatime: The whole idea of tea sounds relaxing. Include things like a special tea mug; cookies; teas; brewing pot; tea bag rest; honey; special sugars

• Hot Chocolate: Include a box of good quality hot chocolate, a mug, marshmallows, cinnamon sticks, and a chocolate spoon.

• Candles: A great way to set a relaxing mood, focus on candles without scent. Flame less candles are always a good option, but if you go with waxed candles, include special lighter or matches; a candle snuffer, wick trimmer, candle shaver and candle holder(s)

• Evening for Two: Include a card that gives the date when you’ll be bringing over dinner to share with them. In the basket include special plates, napkins, napkin rings, bottle of wine, glasses, candles and other items to make this a special night. If you want to bring them dinner and a movie, a video, popcorn and a box of “movie” candy would be good things to add.

• Food: Include ready to eat items that are as healthy as possible. Such items could include: fresh and dried fruits, nuts, dark chocolate, cheese, crackers, smoked salmon, wine or sparking apple cider, napkins.

• Other: If they have a special interest, design a basket around that theme. For the movie lover, a gift certificate to Netflix along with a nice bowl for pop corn, and several boxes of Snowcaps, Twizzlers or whatever kind they like. Keep in mind that giving a gift basket of golf items, when it’s nearly impossible for them to get away for a game, isn’t the best idea.  

Can’t afford to fill a basket, consider something much simpler such as matching socks and nail polish; journal and pen set; favorite hand or body lotion, etc.

Arts and Crafts: I could write volumes about the importance of using your hands to engage in creative activities. Not only does it reduce stress, increase immune function, but it also elevates mood. An art kit-colored pens, pencils, markers, water colors, paper etc.-might make a good gift. There are a variety of craft kits that can be picked up at places like Michael’s or Joann Fabrics.

Puzzles and Games: Be it a jig saw puzzle, crossword, Sudoku, hidden word or something else, activities that can be worked on when there is time, can be fun and relaxing. There are many apps for activities like this.

 

Bring the outside in: Nature is a healing force so things like a Zen garden, plants, flowers, water feature, bird feeder, wind chimes or even a sound machine featuring nature sounds can be calming and relaxing.

 

Gift Cards: Always a great way to ensure that people get something they’ll want, the variety of gift cards are never ending. In additionto the various ones at your local grocery store, consider things like cleaning service and respite care.