Later in Life
There are plenty of challenges for those still coping with Tourette Syndrome in later life — and plenty of ways to deal with them.
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 (involuntary, repetitive body movement disorder), hypoglycemia (low blood sugar), weight gain and Type II diabetes. Neuroleptics and other medications can also effect heart and liver function. Your doctor can help you learn the “early warning signs.” Alternating between different meds or taking an occasional “medication holiday” can help to prevent them (be sure these are taken under medical supervision). 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 they are still reversible.
Almost everyone has some new ailments in later life, such as arthritis, back pain or signs of Parkinson’s disease. While these may have nothing to do with TS, there may be clashes between medications for other health problems and those for tics. Check package inserts, and make sure your doctor is alert to the situation. It also may be harder to cope with pain and soreness from ticcing as you get older. 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.
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 healthcare provider.
Avoiding Social Isolation
It’s not uncommon for people with TS to experience periods of social isolation – sometimes removing themselves from social situations for 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 through your local Tourette Association Chapter. 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.
Getting Past 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.
Speaking of the next generation, why not become a Mentor to younger people with TS and Tic Disorders? If this idea is appealing, you might suggest that your nearest Tourette Association chapter offer mentoring programs. This way you can share the benefit of your life and experience with younger people with TS in a supervised setting.
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 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 provides a listing of professionals who work on a fee-only basis, but 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 website for complete details.
Having a properly executed 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 call tell you where to go if you have concerns about your own care or someone else’s.