Living With Parkinson's
Neal Hermanowicz (Director of the Movement Disorders Program) gives expert video advice on: How will I be able to work if I have Parkinson's?; Will I be able to take care of my children if I have Parkinson's?; Can I drive with Parkinson's? and more...
What is the hardest part about living with Parkinson's?
The hardest part that I hear from my patients about living with Parkinsons disease, is the inability to get rid of it. We all like to fix problems when they arise, and this concept that it's there every morning when somebody wakes up, the clinicity - the fact that it just doesn't go away and that people do have to cope with this is tough on people. Even though, as I say to my patients, I'm optimistic about the treatment of Parkinsons disease. It is treatable. There are things that we can do for it, people do still have a looming sense of what the future may hold, what might happen down the line, and I think that's just hard to shake, and hard to live with, that concern that something may be coming around the corner, that's going to set them back and be insurmountable in some way. That's tough on people, that uncertainty about the future.
When do I need to tell my family and friends I have Parkinson's?
Soon after the diagnosis, you have to tell your family members and friends who care about you. It is really painful to know you have got this disease,but let us be optimistic.We can treat this disease with the support of the family members and friends. They need the personal care and attention and love from their near ones.
What do I need to tell my employers about my Parkinson's disease?
When somebody decides they do wish to disclose to their employer that they have in fact been diagnosed with Parkinson's Disease, I think the first step is just making that acknowledgement and then secondly, educating other people at work about that diagnosis that the diagnosis of Parkinson's Disease is not a diagnosis of a terminal illness. It does not necessarily mean that people will not be able to do their work. People who have that diagnosis, the diagnosis of Parkinson's Disease can, in many cases, continue to do their work productively for a long period of time. So I emphasis with my patients, all of them at the onset when I make the diagnosis initially, this is not a disease that means they will be in a wheelchair and shaking and dependent upon the care of other people. They can continue to lead full lives and in many cases continue with their employment.
How will I be able to work if I have Parkinson's?
The impact on work depends on the kind of work itself. People who are doing things that require a lot of activity or a lot of dexterity, an eye surgeon for example, may have difficulty maintaining their employment or their regular employment with the symptoms of Parkinson's disease. People who are in the public eye or rely on themselves being in the public eye may have difficulty, because of some of the conspicuous findings of Parkinson's disease, things like tremor, for example, which could have an impact on their work abilities. Otherwise, people in many instances can do quite well maintaining their employment with Parkinson's disease. The trouble that ensues may be associated occasionally with medication side effects, or as years go by, the sometimes unpredictability symptoms, the fact that sometimes people have difficulty as their medication wears off, and during the course of the day they may have mobility issues, again making it harder to move around. Those kinds of issues can have an impact on maintaining employment in some people.
How will I be able to do my chores if I have Parkinson's?
People can have more difficulty doing ordinary routine things around their home, things that they would not think about in the past may be causing them difficulty: getting the laundry done, washing the dishes; especially if the symptoms are not maintained in terms of their control consistently during the course of the day. There may be times of the day when things are simply hard to do, and then they need to be postponed to a different day or a different time. With changes over the course of years, people sometimes find that they can't do the things that they used to do, at least not do all the things. They may be able to do many of the things, but some of the things that they took for granted such as household activities may require assistance from a spouse or another family member or a caregiver, depending on the situation, and depending on the circumstances of that patient with Parkinsons disease.
Will I be able to take care of my children if I have Parkinson's?
Pregnancy in Parkinson's disease is uncommon mostly because of the age. The average age of diagnosis is 60 although there were some cases maybe 5% of them are diagnosed at the age of 50. It's not unheard of but it is unusual circumstances. People have become pregnant and they have delivered children without difficulty who've had Parkinson's disease and people who are parents with young children, they do have to adjust, it does require some coping. Not everything is exactly the same and this is one of the issues that comes up. Certainly in my patients for a young girl with Parkinson's disease, we have in fact from my practise put together a support organization so that younger people with Parkinson's disease can share their experience such as issues, like mobility in the morning, may not be as good because the medications haven't kicked in yet. People who have small children trying to get them to school can be more of a challenge, getting the kids dressed, getting them into the car, driving them to school and so forth. These are considerations that can be difficult for people with Parkinson's disease. The children's concerns, themselves, once they learn their parent's diagnosis, I think that requires additional education to let the children know what that diagnosis means, what impact it may have on them having a parent with Parkinson's disease.
Can I drive with Parkinson's?
Driving is always a concern with any neurological diagnosis. The diagnosis of Parkinsons disease does not mean that people must stop driving, but this is an ongoing discussion, and should be with the spouse or other family members about how the driving is going for the person who has that diagnosis of Parkinsons disease. It should be an ongoing and frank discussion with their doctor as well. As I mentioned earlier, some of the medications can have side effects of drowsiness, and as a consequence that could have an impact on driving. Some people with Parkinsons disease do have cognitive changes, not all, but these cognitive changes could also have an impact on safe driving. Things like judging distances; how far is that car in front of me? When do I need to put my foot on the break to slow down to make that turn? These kinds of issues can be affected by Parkinsons disease. So it's an ongoing question that needs to be attended to and discussed by everybody concerned. There are some cases when people with Parkinsons disease are having difficulty and I do suggest or instruct that they need to discontinue driving. That's unusual, but it does occur.
What organizations are available to Parkinson's patients?
In most communities, there are support organizations, lay support organizations where people can go to meet other people who are affected by Parkinsons disease. Some people find them helpful, some people not. They're not for everybody. Here, from my own practice, my patients who are younger, who are diagnosed under the age of 50, and in some cases the 30's 40's or early 50's, who went to these conventional support groups didn't really identify with some of the people who were there, who were perhaps older and retired and had different concerns. These people who are younger asked that I contact other people within my practice to see if they were interested in forming a group, which we have done. It's called the California Parkinsons Group and it meets on a monthly basis, and people find it very helpful in sharing experiences in coping with work, coping with children, and coping with the treatment of Parkinsons disease. All these are of daily concern to people, and it really is helpful. Outside of meeting with their physician, meeting with me or with other healthcare providers to get some insight from other people. What are they doing in this circumstance? How are they? How are their spouses? How are their kids? Their extended family? How are they all coping with Parkinsons disease? I think it's another important component for many people, not all, but many people who have this diagnosis.