Archive for April, 2013

Message from the Editor:

This April, we are celebrating families who face Parkinson’s together.  In this issue, read about the Kiefer family in Saskatchewan, the Lee family in Newfoundland and Labrador, and the Long and Rachlis families in Ontario.  They all share a common focus – the importance of playing an active role in managing Parkinson’s together as a family.

It’s because of families like these, that Parkinson Society Canada, and members of Neurological Health Charities Canada presented a comprehensive plan to policy makers at the Canadian government advocating for increased funding to support key initiatives on behalf of the 5.5 million families living with neurological conditions in Canada.

Canada is a diverse country with many people whose first language is neither English nor French, which is why Parkinson Society Canada has responded to requests for materials in languages in addition to English and French. Read about our free resources available in five other languages.

Also in this issue, take time during Parkinson’s Awareness Month and have some fun making history together.  Enter the “My Family Lives with Parkinson’s” video contest (open to residents of Canada) and you could win one of three fabulous prizes.

We want to hear from you. Please share your comments on the articles. Your feedback will enrich this publication. And if you really enjoy this newsletter, please pass along the link to someone you know so that they may enjoy it too.

Editor

Fighting Parkinson’s as a Family: The Kiefers

John and Wanda Kiefer, along with their son Drayton and their daughter Danica, manage John’s Parkinson’s as a family.

When John Kiefer, a heavy duty mechanic from Saskatchewan, was diagnosed with Parkinson’s disease in 2009 at age 41 he wasn’t caught off guard. John and his wife Wanda had suspected for some time that he had Parkinson’s based on his mobility symptoms.

“It was no real surprise,” said John. “I knew there was something wrong for quite a while. I had all kinds of balance issues and my hands were stiff.”

In 2002 John suffered from a severe anaphylactic shock. Health care professionals mistakenly thought this could have been a catalyst for John’s Young Onset Parkinson’s disease. At the time of diagnosis, their son Drayton, the first of two children, was only one year old. The Kiefers knew from then on in that life was going to be different.

Parkinson’s and Everyday Life

Since John’s diagnosis the Kiefers have learned to adjust their lives around Parkinson’s disease. Every member of the family has a role to fulfill.

“Everyone tries to do things to make life easier for me. My wife and kids have been a huge help. They help with everything,” John explained. “We try to work together as best we can. You’ve got to remember to thank your wife and family for all they do for you.”

John’s working life with his two brothers has also helped center the family. The Kiefer brothers run a heavy mechanic shop that services rigs, tractors and large equipment with John as a partner since 1997. While his duties aren’t as hands-on as they used to be John still plays an integral role in the family business.

“Because he’s in partnership with his two brothers he’s still able to go into work. If he was working for a big company I’m sure they would have forced him to go on disability,” said Wanda.

The Kiefers agree that one of the keys to a healthy life with Parkinson’s is to start with a strong family dynamic at home. Open and honest communication among the members of their family goes a long way in day-to-day life.

“Our relationship is stronger. He knows that I’m there for him no matter what. John is so grateful for everything I do. He tells me how much he appreciates me,” Wanda said.

The Kiefers believe that others can learn from their experiences.

“It’s normal to be scared but don’t let that stop you. Carry on. Modify your life.”

“You gotta try and stay positive and you can’t give up,” John added.

Wanda’s Caregiver Tips

  • Take time each and every day for yourself whether it be relaxing in a hot bath or going with a friend for coffee, reading or whatever relaxes you. It brings needed patience and refuels energy levels.
  • Be patient and only help out with the daily tasks you need to. Ask what tasks they may need help with and try not to do everything or the person may lose their independence earlier.
  • Focus on getting the person with Parkinson’s to do simple chores that they are still capable of doing. For example helping young children with homework can be that person’s responsibility.
  • Give lots of time to get ready before leaving the house. Try to leave the house about 15 minutes before you have to leave so that the individual is not rushed. Rushing can trigger frustration and tremors even more.
  • Effective communication in Parkinson’s can be challenging for both parties. When socializing in a group, it helps to have the spouse or care partner start a story and then pass it on to the person with Parkinson’s to finish the story. That way they do not just sit and listen but rather partake in the conversation.

Following these helpful pieces of advice could help any caregiver have a healthier life and relationship with the person with Parkinson’s in their life.

April is Parkinson’s Awareness Month. For additional information and printable resources visit www.parkinson.ca  or call 1-800-565-3000.

Have your say today!

Your feedback can help improve access to treatments

Parkinson Society Canada is conducting a patient and caregiver survey to better understand the perceived need and desire for the Parkinson’s drug called NEUPRO® which is delivered in the form of a slow-release epidermal patch. The survey will also probe individual experiences with this treatment for those who have used NEUPRO®.

The NEUPRO® patch is a dopamine agonist indicated for the treatment of Parkinson’s disease and restless legs syndrome. It works by delivering a steady stream of Parkinson’s medication over a 24 hour period through the surface of your skin, diminishing the need for dosing throughout the day like many other effective Parkinson’s drugs.

Our findings will be used to inform our Patient Evidence Submission at the federal level to the Canadian Agency for Drugs and Technology in Health (CADTH) and will be used to aide in the development of public policy and program priorities for the future.

Your feedback is extremely important and may help to improve access to this new drug for people living with PD. You do not have to be a Canadian resident to respond to this survey, and we appreciate input from every individual living with Parkinson’s disease and their caregivers.

Click on this link to begin the survey now:

https://www.surveymonkey.com/s/PSC_Neupro_Survey

Understanding Parkinson’s in Other Languages

A walk down the major street of most cities in Canada will confirm that our population is made up of a diverse collection of people, and their diversity can be defined by many things including language. Beyond French and English, Canada’s two official languages, there are many people whose first language is neither of these.  Through our national information and referral centre, we often received inquiries from adult children whose parents did not have English as their first language. “My father has Parkinson’s and your medication info sheet is so good, do you have it in Italian so he can understand his medications?”

“We wanted to meet this need for information and expand our reach to more people living with Parkinson’s,” says Barbara Snelgrove, Director Education and Services, Parkinson Society Canada. We translated four of our most popular resources, into the top five most common languages, after English and French.

To date, core information to better understand Parkinson’s is available in other languages for the following documents:

  • 10 Steps to Taking Control
  • Parkinson’s: The Facts
  • Parkinson’s Medications: What you need to know!
  • Progression of Parkinson’s Disease

If you or someone you know would benefit from these resources in German, Italian, Spanish, Chinese and Punjabi, please use the link below and download the electronic brochures.

Download Resources in other languages.

Parkinson Society Canada is the national voice of Canadians living with Parkinson’s, a neurodegenerative disease. Through regional partners and 240 chapters and support groups, we provide education, support, and advocacy on behalf of over 100,000 Canadians living with Parkinson’s every day. Funding innovative research helps expand knowledge on prevention, diagnosis and treatment of Parkinson’s and will ultimately lead to a cure.

My Family Lives with Parkinson’s Video Contest now open

Do you want to tell your Parkinson’s story? Do you want an opportunity to give back to the greater Parkinson’s community? And, do you want a chance to win valuable prizes?

Then all you have to do is tell us your story on video, in three minutes or less.

Parkinson Society Canada is holding a video contest as part of Parkinson’s Awareness Month this April. This year we are celebrating how ‘Families Face Parkinson’s Together’ and we are looking for video submissions from across Canada about your personal Parkinson’s experiences that involve your family members and caregivers.   Make us laugh, make us cry, or inspire us, but most importantly, tell your story so that other families like yours don’t feel alone.

We will share the winning video submissions online so other people with Parkinson’s can view and learn from them. A panel of Parkinson’s judges will select their top choices and Parkinson Society Canada will showcase the winning videos throughout 2013.

Here’s what you could win:

1st Prize
A Sharp 42 inch LED Flatscreen TV   – approximate retail value $750 CDN

2nd Prize
Paid registration to the World Parkinson Congress 2013 in Montreal – approximate retail value of $350 CDN

3rd Prize
A Roots Canada prize pack- approximate value of $250 CDN

How to enter:

Step#1
Get together with family or friends to film your video. Share how your family experiences Parkinson’s in 3 minutes or less.

Step #2
Submit your video using www.transferbigfiles.com.

Step #3
Download/Sign our ‘Contest Likeness Release’ and email your signed consent form (fillable PDF form) to us, allowing us to share your video online.

The contest opens to residents of Canada on March 25th, 2013 at 12:00:01 Eastern time and runs for four weeks. All submissions received by April 22nd, 2013 by 11:59:59 will be eligible to win. See our ‘Video Contest Rules’ for full details.

This is your chance to help others with Parkinson’s and win a prize for your efforts. Join us for Parkinson’s Awareness Month this April and share your story.

Positivity and Humour Are the Best Medicine

David and Mona Lee

David Lee and his wife Mona reside in Newfoundland and Labrador and are naturally positive people. They’ve stayed that way through thick and thin since David’s Parkinson’s diagnosis in 2007. Although he manages all of his personal care needs Mona and the extended Lee family do what they can to make everyday life more livable for David.

“I handle all of my personal care. I do daily exercises, I have my own treadmill and a bike downstairs and I’m a blackbelt in Tae Kwon Do. I practice at home by myself on a punching bag,” said David, who remains as active as possible at the age of 63.

Mona’s role as a care partner is more the personal advocate. As with all things they carve out their path as a cohesive team, dividing household chores and planning between them.

“If he needs me he tells me. I’m more of the mind to wait and see if he needs help. I do more screwdriver work for example, much more than I used to because it takes dexterity. David still does the large jobs, like lawn mowing and, because he was a firefighter, he can cook,” Mona said as she laughed. “Opening a jar can be difficult for him. Writing is obviously tough with his tremors so I do most of that now.”

“It helps to set up some ground rules. We agreed that if David needed help he would ask for it. I agreed to wait for him to ask for help. It’s important to make the person with Parkinson’s to not feel as if they’re disabled. Parkinson’s is a long journey. There are a lot of resources available in your community. You don’t have to do it yourself,” Mona finished.

When the Lees heard the news from their doctor that David had Parkinson’s both he and Mona were devastated. They had already begun plans for their retirement. Some of those plans had to be changed due to David’s progressive Parkinson’s symptoms.

“We were investigating Parkinson’s for a few months before my diagnosis. I had an idea I had Parkinson’s in 2006.”

While some of their plans for the future may have changed their day to day life goes largely unchanged. It’s their “go, go, go” attitude, as Mona puts it, that has changed the most to accommodate David’s symptoms.

“You’ve always got to plan ahead. That’s the thing about Parkinson’s; it varies so much. You never know if it’s going to be a good day or bad one. It’s up and down. The rhythm of life is different. It took us a while to figure that out,” Mona said.

David struggles mostly with tremors and his speaking abilities aren’t as sharp as they used to be. He also suffers from fatigue, poor sleep and has difficulty with little things like putting on his boots.

“The whole daily cycle is really relentless. I can’t just jump out of the chair and go out,” David said.

Through all their struggles the Lees feel they have learned a lot and hope to share their knowledge with others.

“Keep your chin up and follow your doctor’s orders. Exercise regularly and take each day as it comes. When you’re tired make sure you rest. It makes all the difference,” added David.

With their boundless support system and positive attitude Mona and David look forward to having a rich and full life throughout their retirement together.

For information and resources, call 1-800-565-3000 or visit www.parkinson.ca

Carrying on the caregiver role for Parkinson’s

Jim Long

When Jim Long’s sister Pat was diagnosed with early onset Parkinson’s disease in 1972, he wasn’t overly involved in her care. Pat was only 45 years old at the time and she managed her Parkinson’s symptoms and personal affairs with no assistance. As time went on, however, Jim took on more responsibility to help his sister maintain her level of care and quality of life.

“As she got older and more ill, I felt I needed to help her when I could, and became more involved with her,” Jim says. “I never felt I was being taken advantage of, because it was natural for me to want to help her cope.”

Jim, a lifelong housing developer in the Toronto area and father of four, wasn’t involved in Pat’s physical care, but he managed most of her financial planning and administrative tasks. He also took her to and from medical appointments and would work with medical personnel to make sure she adhered to her new program and medications. In addition he hired care staff to enable her to continue living semi-independently at home and at the
family Balsam Lake cottage where she spent her summers.

“I still have fond memories of the projects she had to keep busy,” he smiles. “She grew herbs which she used for the gourmet meals she enjoyed. She also made beautiful collages of animals, flowers, and scenes which she clipped from magazines and framed. There were times when she had files and papers all over the place. Sometimes her dyskinesia (involuntary movement) was very bad, but other times she could cut flowers out of a magazine very precisely. Some days were better than others, but gradually she lost all of these abilities.”

In 1997 Pat had a small stroke and was admitted to the Toronto East General Hospital and lost her independence forever. Jim was responsible for finding a palliative care home for her and hired extra staff to help her with her daily care.

Continuing Great Work for Great Causes

In February 2005, Pat passed away, but Jim carried on his charity work with Parkinson Society Canada in her memory. Throughout their journey together they both felt Parkinson Society Canada was behind them 100 per cent. Jim collected print material and information from Parkinson staff to improve his knowledge about the organization. He wanted to be able to give this information to anyone he came in contact with in the greater Parkinson community – his own brand of health advocacy.

Jim continues to help the greater Parkinson’s community by maintaining a leadership role with the annual “Hope in Bloom” campaign where tulips are sold with the proceeds going to Parkinson Society Canada.

Jim was recognized with a Queen Elizabeth II Diamond Jubilee Medal for his outstanding volunteerism and contributions over more than two decades to Parkinson Society Central and Northern Ontario.

Advice from Experience

“Learn what you can, be more patient with those with Parkinson’s and have more compassion for them. The more organized and knowledgeable you are, the better off you’ll be helping a family member or friend,” he adds.

Following these helpful pieces of advice could assist any caregiver lead a healthier relationship with the person with Parkinson’s in their life. For additional information, support and printable resources please visit www.Parkinson.ca and connect with offices across the country to find educational workshops, conferences and seminars.

Editor’s note: The newly published Canadian Guidelines on Parkinson’s Disease recommends that families and caregivers should be given information about the condition, entitlements to care assessment and available support services. To download a copy of the Guidelines, visit the website at  www.parkinsonclinicalguidelines.ca.


Charitable registration number 10809 1786 RR0001
All material related to Parkinson's disease contained in Parkinson Post is solely for the information of the reader. It should not be used for treatment purposes. Specific articles reflect the opinion of the writer and are not necessarily the opinion of PSC.

Twitter Updates