Dear Gerry and all, There is no question that living with Parkinson's can be challenging for everyone. Since April is Parkinson's Awareness month, I wrote the following for HAPS newsletter. I think it's important to make people understand the disease. nina **************** Living with Parkinson’s disease is a lot easier if your family and friends, the general public and health care professionals (in hospital situations, assisted living, nursing homes) understand and are aware of the complexity of the disease. There are many idiosyncrasies associated with Parkinson’s disease that are rarely mentioned in textbooks. Since April is Parkinson’s Awareness Month, why not share this information to help others understand…they need to know. * Make them aware that your difficulty in moving may result from slowness (bradykinesia), rigidity, poor coordination, weakness in your arms or legs, poor posture, and/or problems with balance and falling. Your gait may, or may not, be hampered from a shortened stride, dragging your toes, shuffling, freezing or by taking short quick steps (festination). * Make them aware that your ability to function is determined by the timing and effectiveness of your medication and can change, not only by the day, but also by the hour. Fluctuations, such as involuntary movements (dyskinesia) or drug-induced tremor, may occur when the medication is at its peak dosage. At the end of a dose, you may experience cramping (dystonia), lethargy, a period where it’s “wearing off,” or have an “on-off” response. When medications are not given on a precise schedule, the side effects can affect your entire state of well-being. Therefore, it’s particularly important that you make sure that health professionals understand the problem because their pattern of dispensing medication may not necessarily match your needs. * Make them aware it takes a cooperative effort to time your medication dosage. Parkinson’s is not a disorder where everyone gets the maximum results with the usual “take three times a day with meals” instructions. Because of disease progression, continuous monitoring and medication adjustments are required to accommodate the body’s changing needs. * Make them aware that you may be taking additional drugs for other problems and care must be taken to avoid any interactions. * Make them aware that an unexpressive face is a symptom of Parkinson’s; it is not a sign of disinterest or a lack of understanding. Help them understand that it is the rigidity from Parkinson’s that creates the blank expression and can also affect your eye control and blinking reflexes. Explain that some people develop a weak voice with rapid, slurred speech and may drool because of internal regulatory problems. Request that people speak directly to you even if it takes a little longer for you to put the words together for a reply. * Make them aware some people have tremors and others do not. Some may have urinary incontinence or retention, constipation problems or sweat excessively. Some do not. * Make them aware that some people are able to eat without a problem, while others have trouble swallowing and chewing. * Make them aware some people with Parkinson’s become depressed, have memory problems, are unable to pay attention, or may hallucinate. Health care workers should be aware that episodes of dementia or hallucinations could be caused by a medication overdose or interaction. * Make them aware your sleep may be disturbed and possibly affect your functioning during the day. * Make them aware that any kind of stress increases symptoms in direct proportion to the stress. The signs and symptoms are numerous and variable between individuals so you are the only one who really knows what it’s like for you to live with Parkinson’s; but your life may be easier if you make others aware. On Mar 23, 2007, at 9:02 AM, Gerry Haines wrote: > Hi Nina, > Great synopsis of the disease. Brig is suffering with dementia > and that is > the pits. After 22 years of handling this, I am finally getting > tired and > worn out. You and I both know, this is not a one -person disease, > it involves > everyone, family, friends etc. Like you, we have met the best > group of > people in the world, I always said, I never met a Parkinson's > person, I didn't > like. > Hopefully all we have done, from advocacy to clinical trials will > keep newly > diagnosed from the suffering and emotional stress we have had. > Gerry > > > > ************************************** AOL now offers free email to > everyone. > Find out more about what's free from AOL at http://www.aol.com. > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn