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Love

L        O V         E

Isn’t there a song about these letters? Of course! there are many songs about LOVE. I remember my parents singing L is for the way you look at me, O is for the only one I see, V is very very extraordinary E is even more than anyone that you adore ……

However, as we all know LOVE is really complicated.

LOVE can be a noun. The meaning as a noun can include compassion, caring, regard, concern, warmth, friendliness, friendship, kindness, charity, goodwill, sympathy, altruism, philanthropy, humanity and many other words and actions.

LOVE can also be a verb for example ‘I LOVE to go to the beach’ or ‘I LOVE animals’ or even ‘I LOVE exercise classes!!

My husband David and I have been married for 35 years. I do remember our vows, these are what we wanted at the time. ‘LOVE is patient, LOVE is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs…..’ After 35 years all I can say is LOVE is complicated!

Ok great, I have got that part out in the open now! But LOVE is far more than a relationship with one other person. I believe you cannot LOVE someone without loving yourself first.

When I was diagnosed with Parkinson’s depression set in quickly. I found it very hard to feel LOVE. The excitement of day to day life had disappeared. I felt the world was carrying on without me. I was afraid.

Tom Jones sung it for me ‘Without LOVE there is nothing, there is no tomorrow. To live for today and to LOVE for tomorrow is the wisdom of the fool, because tomorrow is promised to no one because LOVE is the wonderful thing that the whole wide world needs plenty of.  And if you think for one minute you can live without it then you are only fooling yourself’.

My fear seemed to be able to take LOVE as a verb away from me. What I didn’t realize was nothing could take the noun form of LOVE away, not even Parkinson’s.

LOVE is a feeling that expresses itself in action. What we really feel is reflected in what we do. The poet’s song can be dazzling and the passion powerful, but the deepest beauty of LOVE is how it changes lives.

Parkinson Wellness Project is LOVE. It is a community of compassion, caring, regard, concern, warmth, friendliness, friendship, kindness, charity, goodwill, sympathy, altruism, philanthropy, humanity and a great interest and pleasure. This is all due to the wonderful folks I have met on my new journey. From our board members to every participant LOVE is alive. Thank you all for the gift of new LOVE.

JILLIAN


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Victory Summit Dec 8, 2018 - Seattle

Jillian Carson, chair of Parkinson Wellness project and Manager of Operations Krista Lavoie are fresh back from an inspiring weekend at the David Phinney Foundation Victory Summit held in Seattle December 8, 2018.

Just under 600 people attended the event. There were PWP, care partners and family. A great community event. As always Davis Phinney started the day off with an inspirational talk. He has had a tough year due to problems with his DBS device and had time on his plate. We learned he was admittedly suffering from apathy. How did he manage this? Well he didn’t his wife Connie put him to work! He had every excuse in the book as to why he couldn’t vacuum, sure sounds familiar to me! Connie says #nevergiveup and Davis did the vacuuming. Immediately he belted out with a big PWRFIT UP! #everyvictory counts ! Yes and he also admitted he felt better after he completed his chore for the day, no matter how long it took him. Another story he shared was how he continues to have problems with his speech, something we all know about. Davis recently joined a choir near him called the Tremble Clefs. He then suddenly belted out ‘Eight Days a Week” a Beatles toon and wow Davis is a great singer. He admitted he could now sing better than he could speak. We all joined in to finish the song. Great voice practice. We need karaoke!

This Summit focused on supportive care, pain in PD, anxiety and depression and how to navigate these. It wrapped up with building resilience for wellbeing, all very informative talks.

Krista and I attended the break- out sessions on Mindfulness and meditation done by Dr Benzi Kluger, a physician from University of Colorado. We learned how to breath in the good air through our nostrils, focusing on the air inside our nose and all the way to the bottom of our lungs and then feel the bad stress go out of our bodies though the weight on our chair and feet on the floor. This technique really works to ground ourselves. We also attended a session on nutrition. Dr Laurie Mischley, a naturopath from Seattle Integrative medicine. She talked about how food has a major impact on health and well- being. Watch Here

Krista was able to meet many people in our extended Parkinson’s family including a few from Victoria. Big Thank you to the Davis Phinney Foundation for putting on such an inspirational day. Just remember everyone that every victory does count, no matter how big or small it is.

ADVOCACY

SIGN THE PETITION!
Expand the Deep Brain Stimulation program for people with Parkinson's in British Columbia

SIGN THE PETITION

People with Parkinson’s disease in BC who are eligible for Deep Brain Stimulation (DBS) continue to face undue hardships and suffering due to the excessively long waitlists. The wait time for DBS in British Columbia is 3 years for an initial consult, and then a further 2 years wait for the actual surgery. In comparison, Saskatchewan with a much smaller population of 1,098,352 people has virtually no wait list and three qualified neurosurgeons; Alberta, again with a smaller population than BC, has a waitlist of six months with and two qualified neurosurgeons; and Ontario has a waitlist of two to three months.

DBS is a surgical procedure used to treat a variety of disabling neurological symptoms—most commonly the debilitating symptoms of Parkinson’s disease (PD), such as tremor, rigidity, stiffness, slowed movement and walking problems. At present, the procedure is used only for patients whose symptoms cannot be adequately controlled with medications.

As Parkinson’s disease is a progressive neurological disorder, there is a limited window of opportunity for those who qualify to benefit from this treatment. The lengthy waitlist may result in condemning patients to a life of disability with flailing limbs, debilitating tremors, and/or the inability to move, work or lead a normal life. 

Expanding the DBS surgery program in BC will enable these people to live independently in their own homes for many more years. For a young person, it may allow them to get off of disability, go back to work and pay taxes. For older patients, it enables spouses to be released from the caregiver role, improve their own health and, if still of working age, become re-employed. Life at home may then continue instead of resulting in disability requiring long-term care and possible hospitalization as they wait for a space. The payoff for the healthcare system will be fewer hospitalizations, fewer emergency visits and avoidance of early admissions to long-term care.

To address this urgent need for improved care, we have three recommendations: 

  1. Recruit at least two additional trained neurosurgeons for BC in the immediate future and provide them with adequate operating room time. Dr. Christopher Honey has trained another neurosurgeon, Dr. Zurab Ivanishvili, who is working out of Royal Columbian Hospital doing other neurosurgeries. With support from Dr. Honey’s team, Dr. Ivanishvili could be utilized to assist with DBS surgeries. 

  2. Explore new technologies and surgical techniques to reduce operating room time from six to three hours. Furthermore, utilize existing telehealth technologies, to provide timely, and fiscally responsible, follow-up care for patients in the two to three months post-operation. We understand Saskatchewan and Ontario are utilizing this technology successfully.

  3. Engage in an immediate travel assistance program for travel to Saskatchewan, Alberta or Ontario to provide urgent surgery for those in critical condition who may otherwise miss the window of opportunity to benefit from the surgery due to disease progression. We understand DBS may already be obtained in these provinces through MSP’s Out of Province agreement with the costs billed back to BC. However, travel is prohibitively expensive for those on a limited income.

We understand that the above recommendations are no easy task; however, people with advancing Parkinson’s disease simply cannot wait five years. We need to expand the Deep Brain Stimulation now!

For further information, please visit: http://www.parkinson.bc.ca/dbs or email hello@parkinsonwellnessproject.org and we can submit for you.

Parkinson's Awareness Month

April is Parkinson's Awareness Month!

2018 marks the 201st anniversary of Parkinson's disease (PD). Parkinson Wellness Project started with the simple goal to help people living with PD live better today through safe effective evidence based exercise programs.

Archives

Sing in Support Event on April 7th, 2018

 

Video performance of “I’m a Believer” written by Neil Diamond from the Sing in Support event!

Help raise awareness for Parkinson’s disease by sharing this video

 

 

Benefits of Exercise - A Stronger Body Leads to Better Movement

The amazing health benefits of EXERCISE are becoming more accepted and common knowledge. Exercise, in all people, has positive effects on overall strength, cardiovascular health, fatigue, weight management and self esteem. With Parkinson’s Disease, however, due to the physical and cognitive changes associated with the disease, exercise takes on even greater importance. Parkinson's routinely leads to muscles feeling weaker and tighter, uncoordinated and uncontrolled movements, and more energy expended to complete daily tasks. 

Exercise, at any stage of life or disease, will almost always help! It's never too late to start reaping benefits of regular exercise including Improved strength, agility and posture, improved endurance, ability to avoid constipation and sound, restful sleep. The list goes on! Consistent and meaningful exercise can also delay, or reduce, problems and progression of Parkinson's, such as balance, posture and flexibility to help you live better TODAY! 

This week, - PWP, Parkinson Wellness Project – an innovative Victoria program built around vigorous exercise is featured on the CBC website. The article does a great job expressing the importance of exercise, as well as introducing a Parkinson's community centre where innovative programs will be available. To read the article, click on the button below.

If you are interested in attending a class for the first time, take a look at the classes we currently offer in Greater Victoria and Sidney. If you have any questions please do not hesitate to contact our Operations Manager at hello@parkinsonwellnessproject.org

Be well!

PWP in the News

Jillian and her team have been working hard this past week spreading the word about the Parkinson Wellness Project. 

Key Messages:

- Parkinsons Wellness Project (PWP), formerly ParkinGo, announces a new name! The new name was chosen to help better link the goal of the organization: to support those with Parkinson's. 

- A $500,000 anonymous donation helps to open the doors of a new Parkinson's Wellness centre right here in Victoria. PWP's aim is to support those living with Parkinson's live better today through exercise! 

- PWP hopes to open their doors in the Winter of 2017/2018. Until then stay tuned for updates about the centre by signing up for our e-newsletter or checking the website. 

It is so very exciting to be announcing the new centre. But for now its back to work to get these doors open!