Paul Tuite, MD just got some more press for his research on Parkinson’s. Check out the article here.
Paul Tuite, MD just got some more press for his research on Parkinson’s. Check out the article here.
“I am inspired by those living with Parkinson’s disease and the individuals dedicated to building Parkinson’s-friendly communities™.”
I have had the pleasure of serving as the president of the NPFM board for the past nine years, and I am proud to say that our efforts in building a valued brand have allowed us to become the leader in Minnesota and surrounding areas for Parkinson’s awareness.
During the past year we have achieved a new level of success in building awareness and driving fund raising. NPFM has recently been awarded a substantial grant from the Otto Bremer Foundation to build Parkinson’s-friendly communities™ in Willmar, MN, Alexandria, MN and Fargo, ND. It is with great pleasure we enter these new community partnership s. We also received a grant from NPF to pursue a needs assessment for a much needed Care Management Module that will assist families.
We also launched Moving Day Twin Cities- a walk for Parkinson’s disease. Historically NPFM has organized a walk for many, many years. In 2012 we leveraged the national branding of the Moving Day campaign with Katie Couric as the honorary national chair. The slogan of Moving Day is “People Who Move Change the World”. With local support from Bert and Gayle Blyleven as our honorary co-chairs of NPFM and leaders forMoving Day, our event grew in both numbers of participants and in funds raised. This success allows us to better serve the Parkinson’s community.
In the pages of our annual report NPFM Annual Report 2012, we have highlighted a few families who have experienced living with Parkinson’s disease and others who are serving the Parkinson’s community. NPFM is truly creating a new level of awareness and hope for those living with Parkinson’s disease. Your generosity makes this work possible.
I am extending my very personal thanks to our new and long-time supporters who bring help and hope to the more than 20,000 families living with the impact of Parkinson’s disease each day. Together we are improving lives.
Paul Blom, CEO Right at Home
NPFM President, Board of Directors
by Martha Nance, M.D., medical director, Struthers Parkinson’s Center
Diagnosing Parkinson’s disease…by colonoscopy? Just kidding. But this idea may not be as far-fetched as it sounds! For years, people with Parkinson’s disease have been telling their doctors that Parkinson’s disease affects more than just the arms and the legs. Doctors are finally starting to listen. Read more …
Physicians and researchers are monitoring brain chemistry of people actively living with Parkinson’s. These professionals are detecting and tracking changes in the brain antioxidant level of glutathione while individuals are undergoing treatment with n-acetylcysteine (NAC).
How it works
The drug is administered intravenously and the brain is monitored with specialized highly sensitive MRI scanners. Once it is in the bloodstream, NAC gets converted into glutathione, which is a potent antioxidant that is also made by the body.
Those who are conducting the treatments are hoping that the antioxidants will slow pathological processes that cause or advance the course of Parkinson’s disease.
How effective is the treatment?
Very preliminary findings from this study show that they are able to determine an individual’s antioxidant level of glutathione before, during and after treatment with NAC. University of Minnesota researchers believe that by using high doses of NAC, they are able to alter brain glutathione levels, which may ultimately affect the course of disease. Overall, the findings of the project look promising.
The project has two phases:
Phase 1: Prove that it can be charted in the brain
Phase 2: Chart effect of oral doses in patients
FOX 9 Reporter Dawn Stevens spoke with Paul Blom, NPFM board president, about the new treatment as well.
“We do research on national level to help prevent falls, but to have scientific ability to come up with treatment that is going to advance people’s life and quality of life, it’s pretty amazing,” said Blom.
We will be sure to share any updates and findings from this new treatment. To hear more about what is happening with Parkinson’s disease research, check out the NPFM Medical blog postings here on our News Blog.
by Steven Stein, M.D. Minneapolis Clinic of Neurology
Depression is a very common symptom in Parkinson’s disease and may affect nearly half of all patients. The cause of depression may be related to the circumstances that the Parkinson’s disease creates, but also may be related to some of the chemical changes going on in the brain. Depression is an important symptom to recognize because it can have a very significant effect on quality of life and because it is potentially treatable.
Sometimes the diagnosis of depression may not be immediately apparent. Your doctor may often ask you questions about your mood, but sometimes your doctor may also utilize various rating scales to help make that diagnosis. One such scale, included here, is the 15-item Geriatric Depression Scale.
Please feel free to answer the questions on this simple test and then share the results with your treating physician.Note: The information included on this blog post is for educational purposes only. It is not intended or implied to be a substitute for professional medical advice. The reader should always consult his or her healthcare provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan. Reading the information on this blog does not create a physician-patient relationship.
By Martha Nance, M.D., medical director, Struthers Parkinson’s Center
The long-awaited long days of summer are here, and I head out to my garden, as do many of you (or to the lake, the jogging path, or even just the back porch), I am reminded to review the special measures that people with Parkinson’s disease need to take to maintain good skin health.
People with Parkinson’s disease have twice the risk of developing melanoma (a serious, potentially fatal form of skin cancer) as people who do not have Parkinson’s disease. In Caucasians, the risk of developing melanoma during a person’s lifetime is about 2 percent. In people with Parkinson’s disease, that risk doubles, up to about 4 percent. (Interestingly, the correlation also goes the other way: people who have had melanoma are more likely to develop Parkinson’s disease).
The good news for non-Caucasians is that the lifetime risk of developing melanoma is lower than in Caucasians (about 0.3 to 0.4 percent in Hispanics and Native Americans, and 0.1 percent in people of Asian or African descent). Unfortunately, there is no specific information about the risk of melanoma in people with Parkinson’s disease in those non-Caucasian groups, but we guess that they also have a higher risk than normal.
Scientists aren’t sure what the connection between Parkinson’s disease and melanoma is. Is it something about the diseases? Is it the medications that we use to treat Parkinson’s disease? We don’t have a satisfactory answer to that question, but since the association between the two conditions goes both ways, it seems likely that it has something to do with the diseases themselves.
What can YOU do to lower your risk of developing melanoma? We can’t make the Parkinson’s disease go away or change how much time you spent in the sun as a teenager, but you can protect your skin from the sun now and in the future. Some researchers think that intermittent sun exposure (sunburn) increases melanoma risk even more than chronic heavy sun exposure (as in farmers or construction workers).
People with Parkinson’s disease can develop many other skin conditions, some related to Parkinson’s disease, and some just related to age; basal cell carcinomas, actinic keratoses, squamous cell carcinomas, seborrhea, etc. Reducing sun exposure can also help to protect against some of these conditions, and an annual skin examination can help to detect them early. All of these skin conditions and lesions can be treated, so there is no reason to postpone seeing the doctor about them.
by Martha A. Nance, M.D., medical director, Struthers Parkinson’s Center
Run, run, run!
Did you get the message yet about EXERCISE as an important treatment for Parkinson’s disease? I know everyone just wants a pill that will make their Parkinson’s disease go away, but unfortunately, we don’t have that yet.
What we DO have, what has been shown to help both mice and humans with Parkinson’s disease, is exercise.
Just about every week for the last two to three years, there has been an article in a medical research journal describing the benefits of exercise. Some of the studies have looked at mice. Some have looked at bicycling, some at the effects of Tai Chi. The most recent article I saw showed that people who took levodopa had a more dramatic and sustained improvement in the function of the dominant hand, than in the nondominant hand. The researchers felt that this demonstrated that medication and active use of the limb combine together to produce more benefit. The nondominant hand improved some with medication alone, but the improvement was never as great as in the more active dominant hand.
Along those lines, there is a sense that vigorous exercise may help preserve brain cells better than lighter activities. Doctors do not agree yet on what the term “vigorous exercise” means in a person with Parkinson’s disease, or how often a person needs to exercise in order to get any benefit. Half an hour of exercise four days a week is certainly better than nothing! Give it a try!
If you have no idea where to begin, then start with your doctor, and ask for a referral to a physical therapist. The therapist can work with you to customize a home exercise program that fits your abilities, and is safe. Some people, after that, will join exercise classes or groups at the health club, the senior center, or the Parkinson’s Center.
A little peer pressure sometimes helps you to stick with a program! Others use a personal trainer to help keep them motivated. We do not know for sure that one kind of exercise is better than another for people with PD. I often say to people, however, based on common sense, that bicycling, or an elliptical machine, may be particularly useful. Using these pieces of equipment force a person to use the limbs on both sides in a symmetrical fashion. Often Parkinson’s is worse on one side than the other, so you can use your “good” side on the bicycle or elliptical machine to force the “bad” side to move bigger or faster than it would on its own. And then you keep those pathways in the brain activated.
Summer is a great time to start an exercise program, or to get back on track if you were less active over the winter. Join the growing number of people with Parkinson’s disease who walk, run, swim, pedal, Nordic walk, ski, golf, and bowl. Get out there and do SOMETHING!Note: The information included on this blog is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. Readers should always consult their own health care provider to determine the appropriateness of the information for their own situation. Readers should also contact their own providers if they have any questions regarding a medical condition or treatment plan. Reading the information on this blog does not create a physician-patient relationship.
by Martha A. Nance M.D., medical director, Struthers Parkinson’s Center, an NPF Center of Excellence
May is Better Hearing and Speech Month, an excellent time to think about your voice. We all know that Parkinson’s disease makes the handwriting smaller, and causes short, shuffling steps. But sometimes we forget about the impact that PD has on the voice. If you have Parkinson’s disease, and have a soft, quiet voice, and if you are of an age where maybe some of your friends are a little hard of hearing, this can make for a difficult combination.
But you don’t have to accept having a small, soft voice. Just as in other aspects of Parkinson’s disease, if you work at it, you can make it better! If you are concerned about the quality of your voice, or if your family and friends often ask you to repeat yourself, then you should ask your doctor for a referral to a speech and language pathologist, or speech therapist. These trained professionals can evaluate your voice, recommend strategies to improve it, and in some cases, provide an intensive voice therapy program.
Not everyone with Parkinson’s disease has the same kind of changes in speech and voice. Some people have a quiet, breathy, or even whispered voice. Others have a harsh, strained speech. Some have excess saliva, and a wet, gurgly-sounding voice (others have the opposite–a very dry voice, made worse by taking in too much caffeine or alcohol or cough drops and not drinking enough water!) Some stammer or stutter, while others have difficulty coordinating their breaths with their voice, and run out of air in mid-sentence. For an occasional person in the later stages of Parkinson’s disease, the problem may be more of a cognitive one—difficult coming up with the right thoughts or words to say in the first place.
The correct treatment depends on identifying the problem, which is why an evaluation by the speech pathologist is so important. It is important to remember that other things can affect the voice besides Parkinson’s disease. Issues completely unrelated to Parkinson’s disease, ranging from gastrointestinal reflux (GERD) to poorly fitting dentures and emphysema, can all affect the voice. A speech therapist can help to determine whether your voice problems are caused by Parkinson’s disease or something else—or both!
For those with Parkinson’s-related voice changes, sometimes an adjustment in medications can be helpful (stopping a medication that is drying up the throat, for instance, or adding a medication to reduce excess saliva). Instruction in good “voice hygiene” helps many people (drink enough fluids, sit up straight, get those shoulders back, take a big breath before you speak, don’t eat and talk at the same time…) Many people—but not all—benefit from a rigorous program to improve voice volume and control, called the “LOUD” program. Struthers Parkinson’s Center, we also have two group activities led by our speech and music therapists, called “Speech Boosters” and “CREATE Singers”, designed for anyone with Parkinson’s disease in the community who wants an opportunity to exercise his or her voice.
The next time you see a speech and language pathologist, stand up, put your shoulders back, take a deep breath, and give a nice, loud, THANK YOU!Note: The information included on this blog is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. Readers should always consult their own health care provider to determine the appropriateness of the information for their own situation. Readers should also contact their own providers if they have any questions regarding a medical condition or treatment plan. Reading the information on this blog does not create a physician-patient relationship.
by Martha A. Nance, M.D., medical director, Struthers Parkinson’s Center, an NPF Center of Excellence
An apple a day…keeps Parkinson’s disease away?
But only if you are a man.
This is the bottom line of a report published (by X. Gao, et al) in Neurology April 10, entitled “Habitual intake of dietary flavonoids and risk of Parkinson’s disease.” This remarkable study looked at information obtained from two very large studies; the Nurse’s Health Study (80,000 women), and the Health Professionals Follow-up Study (about 50,000 men).
Participants in these studies have completed annual questionnaires about their diet (among many other things) since the 1980s. By this time, 805 participants have developed Parkinson’s disease. Based on how much of what kinds of foods the participants said they ate, the researchers estimated their intake of compounds called “flavonoids,” and found that the 20 percent of people who had the greatest intake of flavonoids had a 40 percent lower risk of developing Parkinson’s disease than the 20 percent of people who had the least intake of flavonoids.
But they only found a significant difference in the study of men—not in the study of women. When they examined specific foods that are known to contain flavonoids, the most dramatic disease-risk lowering effect was for men who had five or more servings of apples per week. Drinking tea, red wine or orange juice did not have a noticeable effect on the risk of Parkinson’s disease. Higher intake of berries (strawberries and blueberries), which contain flavonoid pigments called anthocyanins, also lowered PD risk.
The article was accompanied by a nice editorial by Walter Kukull, Ph.D., which explained all the possible flaws in the research. It is a little difficult to explain why noticeable results were found in men, but not women. Was there a difference in how the research studies were done that obscured any benefits that women might actually be getting from these kinds of foods? Or is there something different about what causes Parkinson’s disease in women? Or is there something else that apple-eating men do or have, that is really the thing that lowers the risk? The researchers checked for things such as alcohol use, caffeine intake and cigarette smoking, but they couldn’t check for everything!
So, maybe these interesting results will hold up in future studies and maybe they won’t. But, short of biting into a worm (!), it’s hard to imagine that eating an apple a day is going to hurt you. Gentlemen, start munching! And, if you get tired of apples, sprinkle some berries on your cereal or ice cream. And ladies, even if we don’t have proof that eating apples and berries lower the risk of PD in women, nobody thinks that it is harmful.
So, go ahead—indulge!Note: The information included on this blog is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. Readers should always consult their own health care provider to determine the appropriateness of the information for their own situation. Readers should also contact their own providers if they have any questions regarding a medical condition or treatment plan. Reading the information on this blog does not create a physician-patient relationship.
by Martha Nance, M.D., medical director, Struthers Parkinson’s Center, an NPF Center of Excellence
As April and Parkinson’s Awareness Month come to a close, it is a good time to reflect on what we know and don’t know about this disease. It is also a good time to replace the misunderstanding and despair that are often associated with this disease, with hope, optimism and energy.
The National Parkinson Foundation estimates that there are one million people in the United States with Parkinson’s disease, making it the second most common neurodegenerative disease. Alzheimer’s is the most common. About 50,000 new diagnoses are made each year. Based on these data, we estimate there are about 20,000 Minnesotans wrestling with the complex effects of this disease. This number is expected to double over the next 30 years as we age.
Unfortunately, among the primary features of this disease are a slowing of gait, poor balance, smallness of movement and quietness of speech. You don’t tend to see people with Parkinson’s disease in the community and they don’t shout very loudly on their own behalf. It is easy to ignore elderly people who speak quietly and move slowly; they just melt into the furniture.
Even more unfortunately, this sends a discouraging, and incorrect, message to people who have Parkinson’s disease: “Sit. Stay. There’s not much else to be done.”
It is 2012. That message is simply wrong.
Not everyone with Parkinson’s disease has great-grandchildren or even grandchildren. Although the average age of diagnosis is between 60 and 65, many are in their 50s and some in their 40s. We even have patients who are in their 30s when symptoms begin.
Treatments—medication, rehabilitation therapies, sometimes surgery—combined with a favorable attitude and proper education, have converted Parkinson’s into a manageable chronic disease. Vigorous physical exercise, in particular, appears to stabilize function and preserve brain cells. Parkinson’s disease must be dealt with, and the impact on people’s lives is significant. But, like diabetes and breast cancer, it is a disease that a person can live with, and live well, for many years.
My patients not only WERE amazing people, they ARE amazing people. They work as doctors, nurses, accountants, teachers, mechanics, musicians and business owners. They climb Mt. Kilimanjaro. They win 5K races. They write books. They participate in Civil War reenactments. And (only in Minnesota) they prepare an annual lutefisk dinner for 50 relatives. One was featured in the newspaper last year for his Christmas light display. Amazing people. It is a privilege for me to belong to the Parkinson’s disease community.
There is much that we don’t know about Parkinson’s disease—in particular, how to stop or reverse the gradual loss of brain cells. But the patients of today have opportunities not available 50 years ago. They can actively pursue aggressive management of their symptoms and live well for many years after the diagnosis. And if they want, they can be part of the solution. Clinical research is focusing more and more on treatments to address the disease process itself, as well as better ways to manage symptoms. These research studies need participants, advocates, financial support, and an interested and engaged community. Only together can we find better solutions to the problems presented by Parkinson’s disease.
I will talk in future blogs about current treatments, new research breakthroughs. If I am feeling brave enough I may write about areas of controversy or disagreement. But for today, the message is “Parkinson’s awareness.”
If everybody would tell one other person about Parkinson’s disease, invite one other person to the Moving Day Twin Cities walk, or an educational program, or a fundraising event, we would double the energy available to fight this disease!
Note: The information included on this blog is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. Readers should always consult their own health care provider to determine the appropriateness of the information for their own situation. Readers should also contact their own providers if they have any questions regarding a medical condition or treatment plan. Reading the information on this blog does not create a physician-patient relationship.