Archive for the "NPFM News" Category

Parkinson’s Disease – Early symptoms and diagnosis

january MOAWith the start of 2015 NPFM is launching a new initiative, addressing issues surrounding Parkinson’s disease. The articles and videos used during the year-long campaign will open a conversation about the disease and its affects on individuals and families living with PD.

Each month will feature a new topic. If you have an issue you would like to see addressed, please contact our office.

For the month of January NPFM will focus on early symptoms and diagnosis.

We have two features this month: a video regarding the topic from our partnership with TPT in 2014 and a written piece from Dr. Martha Nance of the Struther’s Parkinson’s Center in Golden Valley.

VIDEO

http://www.mnvideovault.org/index.php?id=26520&select_index=3&popup=yes#3

EARLY SYMPTOMS AND DIAGNOSIS

By Dr. Martha Nance
The four “cardinal features” of Parkinson’s disease that lead doctors to make the diagnosis are:
Tremor
Slowness or smallness of movement
Stiffness of the limbs
Changes in posture, gait, and balance

An occasional person might use exactly these words to describe the symptoms that they have noticed, but some may use a variety of other words, or notice more specific or different symptoms.

“Tremor” refers to rhythmic, repetitive movements, often in the finger, hand, or arm, and often just on one side.  Some people may use the word “shaky” or “shakiness”.  Some people can make the tremor go away by clenching the fist or moving the hand to a different position.  The typical tremor of Parkinson’s disease is most noticeable at rest (a “resting tremor”) and improves or goes away with activity. Tremor can involve the chin or mouth or the leg, less often the trunk or neck.

“Slowness” and “smallness” of movements may manifest as slower walking, a shortening of the stride length (“shuffling gait”), or slowness doing usual activities like dressing or preparing meals.  Smallness of movements in the hands may lead to small handwriting, inaccuracy or slowness of keyboarding, sewing, playing the piano, or other hand activities that require a high degree of coordination.  If movements of the tongue and lips and throat are slow or small, the voice may become quiet, raspy, slurred, or stammering in nature.  Family members and friends may notice a lack of facial expression or slowed blink rate.

“Stiffness” may present as cramping, tightness, charley horses, or aching—often in the same limb or limbs that have tremor or smallness of movement.  The hand or arm may be held in a stiff posture when a person is walking.  It can be hard to separate the stiffness due to Parkinson’s disease from stiffness due to arthritis or other causes.  Stiffness occasionally results in pain.

Changes in posture and gait are often more noticeable to the viewer than to the person who has the problem.  Family members may repeatedly urge the person to “stand up straight” or “quit slouching” or “hurry up”.  A stooped or forward-leaning posture, shortened stride length or arm swing, and reduced confidence about a person’s balance are common.

In addition to these core symptoms, people with Parkinson’s disease may experience—or may have experienced—a host of other symptoms in the years leading up to the diagnosis of Parkinson’s disease.  Constipation, loss of sense of smell, changes in mood, and a variety of disturbances of sleep are common and may begin years (possibly decades!) before the motor symptoms start. Of course, there are many other causes of constipation, loss of smell, mood and sleep disturbance that have nothing to do with Parkinson’s disease.  Therefore, doctors do not make a diagnosis of Parkinson’s disease until the motor symptoms are present.

So, how does a doctor diagnose Parkinson’s disease?  Usually just by recognizing those core motor features.  The more of the features a person has, the more confident the doctor is about the diagnosis.  If only one or two features are present, the doctor may be reluctant to call it Parkinson’s disease.  If there are additional or atypical symptoms (prominent changes in thinking or memory right away, hallucinations, falling as an early symptom, and abrupt onset of symptoms are some atypical symptoms), the doctor may suspect a variant of Parkinson’s disease rather than the usual condition we described above.  If the doctor is unsure whether a person has Parkinson’s disease or not, he may ask the patient to return in a few weeks or months for a second neurological exam.

Researchers are working to develop a “test for Parkinson’s disease”, but that hasn’t quite happened yet.  The FDA has approved a kind of brain scan called a DAT Scan (different from a CT scan or MRI scan), which measures the availability of dopamine in the brain, but the test is expensive (and may not be covered by insurance), not necessary in clearcut cases of obvious Parkinson’s disease, and hard to interpret in cases that are unusual or atypical.  If your doctor has ordered a DAT scan, check to make sure your insurance will cover the cost of the test!

Depending on the situation, the doctor may order a regular brain imaging test (CT or MRI), to rule out other things that can cause symptoms similar to Parkinson’s disease, or do blood tests to look for other medical conditions that can cause stiffness, tremor, or pain.

For many years, doctors have said that “the best test for Parkinson’s disease is to see how well the person’s symptoms respond to levodopa.”  In a sense, taking a levodopa pill determines just about the same thing that a DAT scan measures—the need for more dopamine in the brain—but in a way that is often quite obvious to the person with Parkinson’s disease, the family, and the physician.  You should discuss with your doctor whether you should take levodopa, or any other Parkinson medication.

The time of diagnosis is a difficult time for a person with Parkinson’s disease.  If the diagnosis comes as a surprise, it is difficult.  If the diagnosis is slow in coming, or different doctors disagree about the diagnosis, that is equally difficult.  Make sure that your doctor has told you what you need to know about the diagnosis, any medications that you might receive, and any rehabilitation therapy that has been recommended.  Seek out accurate information, as available through the National Parkinson Foundation pamphlets and books.  And don’t be afraid to ask questions!  There is life after a diagnosis of Parkinson’s disease!

For more about Parkinson’s disease, early symptoms and useful information visit the national website: www.parkinson.org.

“My Story” Moving Day® 2015 – Team Chloe

Who is looking forward to Moving Day® 2015?

We sure are! Here at NPFM, we love highlighting all of the great teams that will be participating in the walk. If you are interested in having your team featured, please email rachel@parkinsonmn.org for more information.

Our spotlight team today is Team Chloe, led by Karen Anderson and her granddaughter Chloe Anderson. This will be their first walk with the National Parkinson Foundation, and they have already raised over $1,000. Read more about Karen and Chloe and why they decided to walk for Parkinson’s, below.

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The inspiration behind the team is Chloe, Karen’s young granddaughter. She overheard her grandparents talking about a friend of theirs from Florida who has a Parkinson’s related illness and wanted to learn more about the disease and how she could help.

Their friend lives in Florida and is an active man, biking 70 miles on his 70th birthday and 71 miles on his 71st birthday. When Chloe learned that he would be unable to make the trip this year, she was determined to help. “Chloe wanted to go biking for him” Karen explains, but “considering the unfavorable weather conditions of Minnesota, we began researching other events.” Karen and Chloe searched the web to learn more about his diagnosis of Corticobasal degeneration, which is within the same family as Parkinson’s. Although there were no events for this specific illness, they found the Parkinson’s Moving Day® 2015 walk at the top of the search results. “She really wanted to participate in [the walk]” says Karen, “so we started a team and it became Team Chloe because she was the inspiration for it.”

Karen also discussed the importance of supporting NPFM and raising awareness. Before this year, she had not taken a lot of time to understand the disease but after the passing of two friends she began to look into it more. “I think raising awareness and getting more money out there to help with research [are great reasons to support the National Parkinson Foundation by participating in Moving Day® 2015.]” stated Karen.

Karen and Chloe are looking forward to enjoying this fun experience with family and raising awareness for Parkinson’s. We are excited to have Team Chloe walking for NPFM this year!

Stay tuned for more team profiles and be sure to submit your own.

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12 Days of NPFM

Thanks Minnesota for making 2014 a great year for the National Parkinson Foundation Minnesota. Our reach has been far and wide, but here are a few highlights of our events and outreach throughout the past year.

 

 

 

 

 

 

 

 

DAY TWELVE
“Living with Parkinson’s” TPT production

Working with TPT, we were able to produce “Living with Parkinson’s”, a half-hour show dedicated to PD, from diagnosis to living with the disease. The show is available online, including segment breaks relevant to specific topics. If you are interested in receiving a DVD copy of the show please contact our office at info@parkinsonmn.org or call 763.545.1272.

And keep an eye out next year as we introduce a special medical feature each month in relation to each of the topics covered in “Living with Parkinson’s”.

DAY ELEVEN
Education Materials

In addition to guest speakers, grants and support group assistance, NPFM also offers materials for people living with Parkinson’s to learn more about the disease and the many facets they may encounter during the journey.

The popular ‘Rainbow Books’, the widely respected  ten-volume Parkinson’s education series focused on issues critical to patients. Patients, families and professionals alike consider these books essential for education about PD, ranging from introductory information to more in-depth material that can be kept and reread many times over.

Interested in getting your own copies of the series? Want a book just on medications, sleep or caregiving? Email us at info@parkinsonmn.org or call 763.545.1272 to request your FREE issues.

DAY TEN
Support Group Materials

NPFM is fortunate to assist those who assist others by providing reference materials for support groups.

This year support groups around the state received three books and a DVD with the “Living with Parkinson’s” show from TPT. The materials can be used as a discussion topic for support group meetings or loaned out to group members.

DAY NINE
Give to the Max Day

An annual day of online giving in Minnesota, the 2014 Give to the Max Day was a great success. Thanks to the generosity of the PD community in the state NPFM was able to raise nearly $9,000, almost doubling the total from the previous year.

The day gave individuals an opportunity to donate to our Parkinson-Friendly Communities initiative, support grants or the general fund.

Thank you to everyone who donated, and to our People with Parkinson’s Advisory Board who served as the face (literally) of the marketing materials.

DAY EIGHT
Educational Speakers

NPFM is proud to offer educational speakers throughout the year. In addition to Evenings Out, we partner with local organizations that work directly with the Parkinson’s community to host informational sessions around the state.

Additionally, members of the Clinical Advisory Board (medical professionals) and the People with Parkinson’s Advisory Committee are available for speaking/educational events. Interested in having someone speak to your group? Contact us at info@parkinsonmn.org.

DAY SEVEN
Dance to Break the Record

Held this year at the Ridgedale YMCA in Minnetonka, Dance to Break the Record offered an opportunity for the Parkinson’s community to come together and get active through dance while challenging chapters from around the country to beat our record of most people dancing for Parkinson’s at one time.

In addition to the record breaking dance, the day also offered tango lessons, free dance and a prize raffle.

DAY SIX
Struthers Parkinson’s Center

The local National Parkinson Foundation Center of Excellence, NPFM works closely with Struthers by providing funding for education and other outreach programs across the state. This year, in addition to general education, Struthers offered a successful exercise training program for group exercise leaders. This training was designed to educate group leaders about how to work with PD patients in exercise programs, helping to maximize exercise effectiveness. This program is just one example of the importance of exercise, and how Struthers works to help improve the lives of those living with PD.

Thank you to Struthers for all that you do!

DAY FIVE
Evening Out for Parkinson’s

NPFM is proud to host two Evening Out for Parkinson’s each year. The event provides a Parkinson’s-friendly dinner and entertainment for the Parkinson’s community.  Often, Parkinson’s families may be isolated because of the disease and its visible symptoms.  The Evening Out for Parkinson’s is an opportunity for Parkinson’s families to enjoy a celebration without fear or hesitation.

DAY FOUR
Parkinson-Friendly Communities

Through a generous grant from the Otto Bremer Foundation, NPFM has been able to work with cities around the state to form Parkinson-Friendly Communities (PFC). Alexandria, Fargo/Moorhead, Willmar, St. Cloud and Mankato have all been touched by NPFM through educational and exercise initiatives, engaging not only people living with PD, but the community as a whole.

For a look at where we’ve been and what we’ve done, read the following article.

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DAY THREE
Golf Tournament

The annual golf tournament was held this year on June 30 at the Minnesota Valley Country Club. This year through the generosity of sponsors, donors and participants we were able to raise $75,000 to support the Parkinson Support Grant Program.

Since its inception in 2006, the annual event has raised over $250,000 for the support grant program.

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DAY TWO
Parkinson Support Grant Program

NPFM supports those living with and affected by Parkinson’s with its Parkinson Support Grant Program.

Originally conceived as a caregiver respite grant program, this year we expanded our reach by adding help-at-home and exercise initiatives. Individuals/families are welcome to apply for one of the three grants worth $500 every 12 months.

For more information, check out the brochure below or visit our website.

Support Grant Brochure

DAY ONE
Moving Day® Walk
The 2014 Moving Day® walk was a success, with over $231,000 raised from nearly 2,500 donors.

A day to unite families, friends and communities both large and small in the fight against Parkinson’s disease, the event offers unique exercise and educational areas in addition to the traditional walk. The walk has continued to grow every year since its inception and we hope that 2015 is no different. Team sign-up has already started! Learn more and join us now in our mission to help those affected by PD.

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Struthers Receives HealthPartners Award

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The Struthers Parkinson’s Center, a National Parkinson Foundation (NPF) Center of Excellence located in Golden Valley, was recognized with the HealthPartners President’s Team Award Thursday evening in downtown Minneapolis.

The award is presented to teams within the HealthPartners network that go above and beyond to improve the health of members, patients and the community.

Struthers innovative model of care using a team-based approach, has been servicing the area since 1978, and has resided at its current location in Golden Valley since 1995. Struthers serves the needs of Parkinson’s patients and their families through comprehensive assessment, interdisciplinary treatment, support, research and education for both patients and care partners. The ultimate goal is to improve quality of life at every stage and help people live well with Parkinson’s disease.

For more information about Struthers and what it offers visit its website.

November is Caregiver Appreciation Month

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As the calendar turns to November, we would like to take a moment to recognize and thank caregivers during National Caregivers Month.

Caregivers play an important role in the well-being of those living with Parkinson’s, and the wonderful work they do on a daily basis may often times be overlooked.

Which is why November is an important month to put aside some time to recognize caregivers you know and show them your appreciation. From providing a day of respite, to acting as a sounding board or just helping with small things around the house, there are many ways individuals can show their family caregiver appreciation.

Need some ideas? Here is a list of 30 Ways to Honor Caregivers from our national headquarters.

A new initiative launched by NPFM, CareMAP, is a great resource center for caregivers, especially those living with advanced Parkinson’s. The website has a local tie, with Struthers Parkinson’s Center’s Rose Wichmann and Joan Gardner helping bring the project to life.

Like to the Max!

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Give to the Max day is rapidly approaching and we are gearing up with our “Like to the Max!” campaign!

Help us get to over 1,000 followers on Facebook! Visit www.facebook.com/parkinsonmn, like our page and get all of your friends and family to like our page by October 30. If we reach 1,000 likes we will have a special announcement regarding Give to the Max.

So get out there, share our page and help us spread our mission of helping those living with PD in the state of Minnesota!

November 13 is Give to the Max Day

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Every Face Has a Different Story. Help us tell those stories and improve the lives of those living with Parkinson’s in Minnesota.

If you’ve met one patient with Parkinson’s, you’ve only begun to hear the story of PD.

Parkinson’s disease, a degenerative disorder of the central nervous system, affects over 25,000 people in the state of Minnesota. The North Star State ranks third nationally in its per-capita population affected by PD, trailing only its neighbors North Dakota and South Dakota.

While symptoms may appear similar in PD patients, how and when they affect each patient varies vastly. Every face tells a different story.

There is no cure for Parkinson’s disease. But at the National Parkinson Foundation Minnesota (NPFM), we are dedicated to helping improve the lives of those living with PD. Through outreach events, educational materials and support, NPFM partners not only with patients, but caregivers, the medical and research community and support groups to enrich lives of those directly impacted by PD.

Your generous gift stays in Minnesota to help us enable more patients, engage a larger community and elevate our voice.  

We are greatful and appreciative of your support.

Here’s a look at our #GTM14 lineup!
We will have two four-hour blocks dedicated solely to our special projects, Parkinson-Friendly Communities and Parkinson Support Grants.

– 8:00 a.m.-noon will be our Parkinson-Friendly Communities focus, with all funds going toward our PFC initiative to help raise awareness and provide outreach across greater Minnesota. Visit the page at https://givemn.org/project/Parkinson-Friendly-Communities5432cc924e268.

– 4:00-8:00 p.m. will be our focus on Parkinson Support Grants, an annual $500 grant program for those living with PD to assist in respite care, help-at-home and exercise. Visit the page at https://givemn.org/project/Parkinson-Support-Grants5432cbe9db018.


We will also have several prize giveaways throughout the day!
 Be sure to check out our Facebook page throughout the day for more details on the giveaway items and hourly updates on our donation progress!

– 4:00-8:00 a.m. – All donations received between those hours will be eligible to win a Parkinson’s blanket and resource books

– 8:00 a.m.-noon – All donations received during our PFC power hours will be eligible to win one of two $75 Visa gift cards

– Noon-4:00 p.m. – All donations received between those hours will be eligible to win a dinner and a movie package, with a gift certificate to Ham’s Sandwich Shop in Minnetonka and movie passes from AMC

– 4:00-8:00 p.m. – All donations received during our Parkinson Assistance Grants power hours will be eligible to win a basketball autographed by Minnesota men’s basketball head coach Richard Pitino and two tickets to the Gophers game versus Purdue on February 7

 

 

Parkinson-Friendly Communities coming to Mankato

INFORMATIONAL POSTER

When: Tuesday, September 30, 5:00-6:00 p.m.
Where: VINE Adult Community Center, 421 E. Hickory Street, Mankato
Register: Call 763.545.1272 or email info@parkinsonmn.org

NPFM welcomes those living with Parkinson’s and the entire greater-Mankato area to learn more about the organization and its efforts to work with the community to make it more Parkinson-Friendly through outreach, education and events.

NPFM is the Minnesota chapter of the National Parkinson Foundation, operating as a local nonprofit working to raise awareness and funds for the upper Midwest Parkinson’s community. The organization works to better the lives of those living and impacted by PD through outreach and providing resources.

The creation of Parkinson-Friendly communities is possible through a generous grant from the Otto Bremer Foundation. The effort works to ensure individuals and families touched by Parkinson’s remain vibrant, engaged members of our communities. NPFM has been working in several communities around the state including Alexandria, Willmar and Fargo, and are excited to expand into Mankato.

 

NPFM Accepts #PieItForward Challenge

 

Over 25,000 people are living with Parkinson’s in the state of Minnesota, the third-highest per-capita total in the United States.

Working alongside the National Parkinson Foundation, NPF Minnesota decided to help raise awareness and funds for Parkinson’s by participating in the #pieitforward campaign.

To kick off the campaign, executive director David Wheeler and past president Paul Blom accepted the challenge. Watch their video for inspiration and to see who they challenged, then join the effort by following the instructions below!

Want to do Whatever It Takes to Beat Parkinson’s?
To show your support for Parkinson’s? Here are the few easy steps.

1. All those challenged must take a whipped cream pie to the face.

2. When you complete your challenge, the person who challenged you must then donate to the cause. You may also challenge more individuals to participate and help spread awareness!

3. Be sure to share your videos on your favorite social media networks using #PieItForward – then send us the link to your video!

Donations can be made directly to NPFM to help our mission to raise awareness and provide outreach opportunities in the state of Minnesota. Please specify your donation as #pieitforward challenge when submitting.
DONATE NOW

Donations can also be made to our national office.

We look forward to seeing your best videos for a great cause, Minnesota!

Parkinson Friendly Communities Update

The National Parkinson Foundation Minnesota has been active across greater Minnesota, helping to create Parkinson Friendly Communities in Fargo, N.D., Alexandria and Willmar, and this year expanded its efforts in St. Cloud and Mankato.

Through a generous grant from the Otto Bremer Foundation, NPFM has been working towards creating awareness about PD in a state that ranks third in the nation in Parkinson’s patients per capita.

Here’s a look at what NPFM has been up to in each community, in addition to a look forward.

Fargo: NPFM hosted guest speaker Liz Ogren, founder of Pedal and Roll, for a community biking and informational session. Training events for medical staff were also hosted.

Alexandria: TULIPS training for caregiving staff was provided; hosted a Nordic walking event, including training for staff; provided Nordic walking poles for the community to use indoors and outdoors to help stay active.

Willmar: Training for physical and speech therapists in the LSVT BIG and LOUD programs; an adaptive walking path was constructed to help people learn to navigate different walking surfaces and complete household tasks; NPFM paired with Liz Ogren for a two-day event, highlighted by a “Prospering with Parkinson’s” discussion on day one followed by a Pedal and Roll event on day two, allowing individuals to utilize adaptive bikes and Nordic walking poles.

St. Cloud: NPFM has been received well in the community. Several guest speakers have been lined up, and individuals in the community are currently working with NPFM to have PD-specific exercise training brought to the area.

Mankato: NPFM has made its first steps in the community, including providing guest speaker Susan Gangsei for National Caregivers Month in November.

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