GETTING OLDER WITH TS
Tourette Syndrome usually starts in childhood and gradually becomes less noticeable in adulthood. However, a significant group of people with TS go through their 20's and 30's waiting for the promised improvement that never comes. Often, hitting 40 or 50 marks the turning point.
For those still coping with TS in later life, here’s an outline of some challenges you may face—and some ways of dealing with them. ALWAYS CONSULT WITH YOUR PHYSICIAN BEFORE UNDERTAKING LIFESTYLE OR MEDICAL CHANGES.
- Medication after-effects. It’s important to review your medications now and then with your doctor. Long-term use of neuroleptics is sometimes associated with side effects, including the movement disorder tardive dyskinesia, hypoglycemia, weight gain and diabetes. These and other medications can also affect heart and liver function. Your doctor can help you learn the “early warning signs” for tardive dyskinesia, and alternating between different meds or taking an occasional “medication holiday” can help to prevent it. IT IS ADVISABLE TO CHECK WITH YOUR PHYSICIAN REGARDING ANY CHANGES IN MEDICATION REGIMEN. Make sure tests for hypoglycemia/diabetes, and for heart and liver function, are part of your annual checkup. These simple steps should turn up any signs of trouble while it’s still reversable.
- Health changes. Almost everyone has some new ailments in later life, such as arthritis, back pain, or Parkinson’s disease. These have nothing to do with Tourette Syndrome, but there may be clashes between medications for other health problems and medication for tics. Check package inserts, and make sure your doctor is alert to the situation. It can be harder to cope with pain and soreness from ticcing as you get older, too. Complementary approaches like Tai Chi and Pilates exercises can give you pain relief and increased flexibility. Fitness centers, alternative health providers, and day programs for older adults are good resources for finding out what’s available near you. CHECK WITH YOUR PHYSICIAN BEFORE UNDERTAKING ANY PROGRAMS OR APPROACHES.
- New issues. Workplace and parenting stresses tend to diminish as you get older, but fresh stresses (such as health worries) can have a negative impact on your TS symptoms, or activate problems like depression, anxiety or obsessive-compulsive disorder. OCD is a particular problem for some older people with TS, especially if obsessive-compulsive behaviors have become entrenched over the years. New treatments, including more recent drugs and developments in cognitive behavioral therapy, are definitely worth trying—even if past efforts have been unsuccessful. Discuss possible new treatments with your provider.
- Getting past the legacy of discrimination. Don’t let the past drag you down. Although even 50 or 60 years later, childhood bullying, school failure, and workplace discrimination can affect your circumstances, it’s never too late to try on new, assertive attitudes. One of the best parts about being older is that people actually take you seriously, so use that fact to join in campaigns for changes that will improve your life, and help the next generation as well.
- Avoiding social isolation. Thanks to myths about TS and some people’s insistence on conformity, it’s not uncommon for people with TS to experience periods of social isolation. Others remove themselves from social situations in fear of disapproval, or because it’s simply exhausting to have to suppress your tics for hours. Even if you haven’t before, do seek out the company and support of other adults with TS via your local TSA branch. You’ll find resources there to help you become more comfortable in other social situations, too. Take positive steps to stay in the social swing, from joining community groups to signing up for group travel or adult education classes.
Sadly, some older adults with or without TS face harassment, intimidation or physical assault in their communities. Don’t suffer in silence—report these crimes. The perpetrators may be in “double trouble,” as their actions can fall under state or Federal hate crimes legislation.
- Retirement and financial issues. If you do not have an unbroken work history, it may affect your financial planning for retirement. Older people with TS can also face high premiums for disability, personal liability, and life insurance. As early as you can, check to see if a nearby Independent Living Center (see http://www.virtualcil.net/cils/) or a local disability group offers help with financial planning. If free help isn’t available, see an independent financial advisor. The National Association of Personal Financial Advisors (http://www.napfa.org/) provides a listing of professionals who work on a fee-only basis; avoid “financial advisors” who have an interest in selling you investments or insurance. Also, check to make sure your Social Security eligibility is maintained—you may need to make voluntary contributions during periods of unemployment to avoid loss of benefits. See a local Social Security Administration office or the SSA Web site (http://www.ssa.gov) for complete details.
- Long-term care. An advance directive and providing concise, accurate information about TS to long-term care staff are important strategies for ensuring appropriate treatment and avoiding abuse in residential care. A lawyer can help with advance directives. The National Long Term Care Ombudsman Resource Center (http://www.ltcombudsman.org/) call tell you where to go if you have concerns about your own care or someone else’s.
Young people with TS are usually told that their symptoms will lessen once they reach adulthood, and for most that’s the case. But even if yours don’t, years of persevering will have made you truly older and wiser, more capable of coping with any challenges that come your way. The key to handling the changes is taking charge of your health, your relationships, your leisure time, and your finances.