Program Announcements
Mar 18 Gastrointestinal Issues – Dr. Vance Van Drake will be discussing PD and
problems with the gut. Other topics may include the value of colonoscopies, endoscopies, and if there are “alternative” treatments available.
Apr 16 Leo Raffaill, BSW from IU Medical Center, will be discussing research and other
ongoing programs at the IU Medical Center.
May 20 Overview of “in home” exercise programs – Dan Spangler will be reminding us of
familiar programs available and some new ones. Remember exercise is the key.
June 17 Deep Brain Stimulation Roundtable – A panel of our Support Group members will
share their experiences and answer questions regarding their DBS surgeries.
February Meeting
Sharing and Caring SummariesThe Caregivers met together at our February meeting. Several serious concerns were aired and discussed. It was a time where the support of the group was needed and we were there for each other. It was truly a time when we could reinforce the knowledge that no one is alone and everyone understands the situations. We are getting to know each other better and hopefully will feel free to communicate between meetings. The snacks were delicious.
~ Marcia McKibben ~
A wide range of subjects were discussed in the Parkinson’s group, including but not limited to the following: The Neupro patch will be available again in about two years. We discussed the outcome of Medicare Part D (for medicines), and, for the most part, those who have had it have saved most of the cost of their medicines for the year they had the coverage. Several thoughts were shared about how to find a good neurologist. There is a tremendous pressure put on some caregivers; the need to appreciate this and to give them some relief and support was noted. Several spoke of their own personal experiences with the disease. A matter that covered a large piece of the discussion time was that related to the situation when a PWP goes into a hospital. Apparently some hospitals do not carry PD medications in their pharmacy. In that case it may be important that you take your medicine with you when you go to the hospital. The bottom line was that someone may need to be assertive with hospital personnel including doctors and nurses who do not understand the importance of taking PD medicine on schedule and insist on getting the medicine at the proper time rather than the time that is convenient for the hospital staff. Hospitals generally do not want patients to bring their medicine to the hospital. ~ Ed Gatke ~
Since being diagnosed with Parkinson’s over two years ago, my main symptoms are tremors and smaller writing. My mobility and cognitive ability seems to be fairly good. My medications (Stalevo, Azelect and Xanax) may be helping.
By attending the Parkinson’s Support Group meetings I’ve found out what this disease can progress to and hopefully it will be a long time till I get there. I haven’t had “lockups” or problems if I miss a medication. I’m sure that will change.
What the Caring and Sharing meeting helped me understand is that I’m not alone and don’t have do this on my own. The topic of hospital stays was scary. Hospitals don’t have a system for administrating medications for Parkinson’s patients in a timely manner. Being assertive is what is needed to get meds on time. Dan Spangler and a lady from Parkview are trying to develop a protocol for hospital to follow for Parkinson’s patients.
To make it through this we need a positive attitude and laugh a lot. Exercise is very important. I’m looking forward the May meeting on “in home” exercise programs. The monthly PSG Newsletter is very helpful for my family and me. ~ Owen ~
These support sessions are very helpful! It has given the newer spouses an overall view of what’s possible to come in our future with our spouses.
Anytime the Parkinson’s disease support group can have these sessions is always a win-win situation. It has given my family a chance to educate ourselves in what Parkinson’s is all about. ~ Jane ~
The sharing and caring meeting on the 18th was my second meeting. I went to the initial meeting for many reasons. The first and biggest reason is that my father asked me to go. It is important to me that my parents know I care about them and are interested in what is happening in their lives. When my father was diagnosed with PD my family did not know much about the disease, and that includes my father. I encouraged him to get involved in the PD community to find out more information about the disease and develop friendships that would hopefully develop into valuable resources for emotional support, and guidance through a maze of challenging obstacles. The second reason I went to the meeting is that I wanted to find out all that I could about PD as well. I wanted to know how others were handling the disease. Are there right or wrong ways to care for my father? What should I expect in the next 5 years? What should I expect in the next 10 or 15? Will there be 15 years? I also had selfish reasons. Since PD is inheritable I am at greater risk of developing the disease. I felt that it was better for me to be informed about what could happen rather than ignore the possibility, hoping it would go away like a stray dog.
In the meetings I was able to listen to many caregivers. I heard about the love they had for their partners, the frustration they manage, the surprise at knowing others are going through the same situation, and really good advice. I was able learn many things that helped me talk to my father in a more educated way. We have been able to talk about what type of future to plan for and what options we should be looking for. It has helped direct attention to his care. It has removed the disease as an elephant in the room. We have an openness where I can acknowledge his PD and see him as a person not a disease.
I enjoy listening to everyone's perspective, their stories, and their concern. I have a must greater understanding of what might be coming next and possible symptoms to look out for. The entire support group has warmly received my sister and me. We have been encouraged to share and contribute. I have felt as welcome and valued as anyone in the group. It has been a very positive experience. ~Tracy ~
For me too, this was my second meeting of the sharing and caring meeting on the 18th. There were some reasons for me going the first meeting, the first and most important was that my father asked if I would like to go to a support meeting for PD. Just as my brother, Tracy said, "It is important to me that my parents know that I care about them and are interested in what is happening in their lives." When my father was diagnosed the family knew a few things about the disease but did not really understand what triggers and how well that it may progress. My grandmother was diagnosed with the disease much later in her life (my dad's mother). Which for me was another reason for going, when can the symptoms start since there is a genetic link? Knowing that there is a link, I am at a greater and higher risk of developing the disease. So I felt that with more information I will have a better understanding of the disease and what to expect in either 5 or 10 years for my father.
In the meeting, I too was able to listen to the other caregivers with their love, concerns, as well as frustration from other family members, and their physicians. By having this information it has helped me understand what type of care I would like to see for my father, as well as think of my mother and how will this help her in the long run. Since my brother and I have been attending the meeting we have received positive feedback from the support group. I plan to attend more of the sharing and care meeting and I also encourage other caregivers say brothers, sisters, and even their children to attend these meeting. ~Trina ~
A Note from Dan Spangler
Well here we are again… a chance to get involved. (Save the date of April 10, 2010) As we have mentioned, Turnstone is sponsoring disABILITIESEXPO, at the Allen County War Memorial Coliseum, from 10:00 am until 7:00 pm. on April 10th.
Turnstone has been such a valuable partner to our support group. Here is a chance for us to return the favor BIGTIME. Listed below are several volunteer opportunities in which we can get involved. Decide how you can help, and call tomorrow to volunteer. Your contact at Turnstone is:
Jennifer Neher
Director of Development and Marketing
260-483-2100 x 263
Make some time to visit the EXPO as well. To find out about all that is going on, access www.turnstone.org/expo/ . You will be amazed at all that is being planned, the number of exhibitors, the breakout sessions scheduled, and this is the website that gives you access to all that information. Make a day of it. Just do it. Thanks in advance.
CAREGIVER TIPS
Patience
One of the most important things a caregiver needs is patience. The caregiver needs to be aware that our stress level affects the person with PD, usually in a negative way. A negative remark or “sharp comment” or “the look” is picked up by the person with PD and usually worsens the symptoms. Being patient will make our days go more smoothly and less frustrating. Do not rush them. Give them plenty of time to do what they need to do. Patience is the key word in our lives. One way to increase your patience as a caregiver is to remind yourself that it is the disease, and not the person that is frustrating you. People with PD need a lot of positive encouragement and extra time to accomplish tasks.
~ Marcia McKibben ~
"Being challenged in life is inevitable, being defeated is optional." – Roger Crawford
Breakthrough technology for testing Alzheimer’s & Parkinson’s Drugs
News at Northwestern - In a breakthrough development for early drug research, Northeastern University scientists are now able to test, in real time, the impact of new drugs being developed to treat neurodegenerative diseases like Alzheimer’s and Parkinson’s.
A patented new imaging technology developed by Northeastern’s Center for Translational NeuroImaging (CTNI) enables researchers to produce highly accurate data without resorting to traditional preclinical testing methods. Those methods involve euthanizing laboratory animals at different stages of the study to assess disease progression and the effectiveness of the drug.
“Animal imaging is crucial in early drug discovery, but the use of anesthesia creates an artificial situation that can mask true drug activity,” said Craig Ferris, CTNI director and professor of psychology and pharmaceutical sciences. “Studying awake animals leads to improved drug safety evaluations and data accuracy.”
Ferris noted the testing they are now able to perform at CTNI maximizes accuracy and leads to improved drug development processes for pharmaceutical and biotechnology companies that are working to treat central nervous system diseases, including Alzheimer’s and Parkinson’s diseases.
The center’s imaging-based preclinical testing is performed under the aegis of a new business venture, called Ekam Imaging, Inc., founded by a team that includes Ferris and Graham Jones, professor and chair of the department of chemistry and chemical biology at Northeastern.
The technology has spawned eight patents focused on the imaging of animals and a new method for tagging drugs using microwave-mediated organic synthesis technology. This procedure allows injected compounds to be more accurately tracked and evaluated for efficacy.
Additionally, the center uses advanced data-analysis techniques, including three-dimensional brain “atlases” used for data visualization, and imaging models of various disease conditions.
“The advantages of our technology give researchers the ability to provide information and analysis to drug companies that enable them to make more informed go/no-go decisions on their drug development programs,” added Ferris. “It will help reduce the time to market for new therapeutics and lower the overall cost of drug development.”
taken from the Northwest Parkinson’s Foundation website – www.nwpf.org
Ibuprofen May Help Stave Off Parkinson's
Finding suggests need to look closer at the disease as inflammatory, expert say.
Ellin Holohan
Business Week - Regular use of ibuprofen, a common anti-inflammatory drug, significantly lowers the risk for developing Parkinson's disease, Harvard researchers report.
People who took three or more tablets a week showed a 40 percent lower risk than those who didn't take the common pain reliever, their study found.
Study author Dr. Xiang Gao, an instructor and epidemiologist at Harvard Medical School and Brigham and Women's Hospital in Boston, said the findings are important for anyone at increased risk for Parkinson's because most people with the disease eventually become severely disabled.
"There is thus a need for better preventive interventions," Gao said. "In this context, our findings regarding the potential neuroprotective effect of ibuprofen, one of the most commonly used analgesics, on Parkinson's disease may have important public health and clinical implications."
Parkinson's is a disease that affects nerve cells in the brain that control the movement of muscles. It affects an estimated 1 million people in the United States, men far more often than women. The exact cause is unknown, but experts believe it's a combination of genetic and environmental factors.
Gao said that though the drug levodopa is the current standard treatment for Parkinson's, much more is needed. He is scheduled to present the findings in Toronto at the annual meeting of the American Academy of Neurology in April.
The findings came from an analysis of data on 136,474 people who did not have Parkinson's at the start of the study. In a six-year span, 293 were diagnosed with the disease. Those who took the largest doses of ibuprofen were less likely to have developed Parkinson's than were those who took smaller amounts of the drug, the study found.
No other pain reliever was found to lower the risk for Parkinson's.
Dr. Michele Tagliati, an associate professor of neurology and director of the Parkinson's Disease Center at the Mount Sinai School of Medicine in New York City, described the results as somewhat surprising and said they emphasized the need for further study.
"It's intriguing [that the finding applied to] just ibuprofen and not aspirin or acetaminophen or other commonly prescribed medications for inflammation because it implies something more specific to ibuprofen that should be investigated," Tagliati said. "So it narrows the focus to a subgroup of [anti-inflammatory drugs]."
Tagliati called the study "eye-opening." Parkinson's is not considered an inflammatory disease, he said, adding: "We might be missing something. There is more work to be done."
But in the meantime, Tagliati said, he would "definitely discuss ibuprofen use" with his patients because, if it works to protect against the disease, it could very well benefit those who already have it.
He cautioned that persistent use of ibuprofen can lead to gastritis, or inflammation of the stomach lining, but said that, in comparison, "there is very little to lose when measuring its side effects against the effects of Parkinson's," which can include loss of balance, stiffness, hallucinations and dementia. taken from the Northwest Parkinson’s Foundation website
“We can easily manage if we will only take, each day, the burden appointed to it. But the load will be too heavy for us if we carry yesterday's burden over again today, and then add the burden of the morrow before we are required to bear it.”
~John Newton ~
