Some coping tips from a PDer who had made about every mistake you can make with this disease – and lived to tell about it.
1. Be your own best advocate. The neurologists are slammed; the few area movement-disorder specialists who specialize in Parkinson’s are especially busy. Help them by helping yourself.
Bring your list of medications (or the bottles they come in), your questions, your caregiver/significant other or friend to your appointments. Most doctors are agreeable with tape-recording appointments, which can be invaluable for both sides. I like to record my appointments, then listen to them before my next appointment to bring myself and my medical provider up to speed. It also helps those with memory issues to have something to fall back on, so you don’t keep asking your neurologists the same questions over and over.
Also, pay close attention to the warnings to the drugs you are taking. These are high-powered brain drugs that can have high-powered side effects. The 16th century Swiss chemist Paracelsus was onto something, perhaps prescient about certain dopamine agonists, when he said famously, “The dose makes the poison.” Read the warning labels, then read them again.
2. Exercise your body. Even if you have mobility issues, doing ANY sort of exercise – even if it is simply squeezing a rubber ball or moving your toes or neck – is perhaps the best thing you can do for yourself. I have found walking around my neighborhood – taking different routes for variety – for about 30 minutes to be the safest, best way to get exercise. I also enjoy league bowling as it is fairly easy on the body, inexpensive and provides social interaction in a setting that is very accommodating and comfortable (bowling alleys are especially nice on the hot days that are so rough on PDers) for folks with disabilities. There are also PD-specific yoga and Tai Chi classes.
By contrast, be careful not to overdo it. If you have doubts about your ability to do an activity – skiing, roller skating, riding a bike, mowing the lawn, cleaning roof gutters, when your balance is wobbly, for instance – it probably is best to avoid.
I wear a stylish (at least to me) baseball batting helmet with real protection – not one of those cheap ballpark freebies – any time I do something that is even remotely dangerous, such as pretending to listen to my wife share her day while trying to watch TV. (The helmet I wear is available at: http://bplowestprices.com).
3. Exercise your mind. Even if you are stuck at home most of the time, have some varied activities. I have what I call “Joel University” in my home: everything from books (even before being diagnosed, reading was my favorite pastime, a PD bonus!), to DVDs to video games to music to computing to volunteering. Volunteering is its own reward. I learned relatively late in my life that the saying “You get real happiness when making others happy” is mostly true.
If an activity is not working, keeping me engaged, I simply move on to another, even if it means curling up with the newspaper or a favorite book. Try to avoid getting hung up on one activity and having it turn your mind into mush faster than it needs to or doing something so much it becomes a compulsive behavior.
You can get just about anything on the Internet now, which can be a huge convenience compared to having to go to a store, find parking, deal with funny looks from pinheads, etc.
But be careful of spending too much time online. PD chatrooms, which can be comforting, but can also be rife with misinformation and conflict. And if you find yourself gambling or looking at sex sites all day, or going on spending sprees, you should probably get outside help from a behavioral specialist.
5. Be prepared for psychological changes. The meds, the disease or a combination of both, can jump you before you know it. Both you and your caregiver(s) should have a plan in place in the event of hallucinations, dementia or any other behavior changes. This is perhaps the most underreported part of the disease, yet is often the most damaging and life-threatening. I personally feel the newly diagnosed should immediately be referred for a psych evaluation; the medical and psych worlds are often disconnected with PD. Again, do your homework.
6. Beware of quick “cures” and unverified medicines and supplements, i.e. unethical scumbags who only want your money. If what is being proffered sounds too good to be true, it probably is. Check with your neurologist and other doctors before wasting time and money on quick-cure charlatans.
7. If you are on the fence about deep brain stimulation surgery (DBS) but think it could help and if you qualify for it physically and mentally, get on the waiting list. It is to date the most effective surgical treatment for PD and, while not for everyone or without risk, DBS can lead to significant improvement in tremor, rigidity and dystonia. If something better comes along or you decide you don’t want this reversible surgery, you can always get off the list, which can be long and impacted by things well beyond your control.
8. Volunteer for PD research study groups, but be wise about it. If something is going into or being injected into your body that has not effectively treated rats, monkeys, let alone humans, it is probably best not to be the first human guinea pig. I routinely volunteer for a local teaching hospital as a PD patient from whom the med students can learn. No pills, needles or other invasive elements. Just poking and prodding – diagnostic volunteering that ideally will help accelerate PD treatments for the better and help both sides. Plus I usually get a small stipend.
9. Cut your caregiver some slack. This is huge. Make sure they get some “me time” away from you and the disease. My wife does not attend many PD seminars (“I get enough PD at home”), and I don’t blame her. Help where you can. I try to live by my own “two for one” rule: If I get up and get ONE thing out to wear/play with/work on, I try to put TWO things away, though sometimes the reverse is true.
10. Do things mindfully. Almost everybody has a lot on his/her proverbial plate, and given what PD can do to the short-term memory, it can be downright confusing to navigate the modern world. The key is to focus on the matter at hand, and not move on to something else until the matter at hand is resolved/finished. This is especially true if you drive.
11. Finally, it can’t be stated enough. Be your own best advocate! The more you and your caregiver can do for your medical providers, the more they can and will do for you. It’s very reciprocal. Parkinson’s is a clinical disease – no blood test or X-ray detects it – and most of us with it are misdiagnosed when symptoms first appear. So don’t be afraid to make some well-educated, polite noise to get answers.
And…don’t forget to enjoy every sandwich.
Parkinson Association of Northern California Board-Member/Newsletter Editor Joel Davis is a Sacramento writer whose work – including articles on PD – is at www.justicewaits.com.
Any suggestions in this column are for general information only.