Growth

Its April, its spring, its new growth!

As I go on my daily bike ride it amazes me to see all the new growth. The momma robins are sporting fat bellies, the grass is growing greener, and lovely buds are breaking open in the trees around Victoria, not to mention the cherry tree blossoms.

My mind wanders back to PWP. It was 2014 when Diana Satok and I decided it was time to share and register ParkinGo as a charity. Now five years later our dream has come true. But how has this happened? Why 5 years?

Growth can be slow or fast. Usually somewhere in between. Good growth is about growing a healthy business; expanding capacity; engaging bigger sponsors; advancing people skills, and more. Bad growth is about growing unnecessary debt; expanding the wrong kind of behaviours; engaging with bigger problems; allowing issues to progress into a crisis, and more. I can assure you that we have never taken on any bad growth however yes, our growth has been slower than we had wished for.

From the chair of the board of Parkinson Wellness Project I can tell you we all have been working hard to get this project up and running. We have hit some road blocks during the building phase but they are behind us now and we have grown the dream we had started back in 2014.

We have now grown into an emerging community with the objective of barrier free participation. Victoria is at the

forefront of a select group of North American cities and is leading the way in putting research into practice at the new centre. PWP represents the new face of Canadian healthcare, empowering a community building model where people living with Parkinson come together in taking responsibility for their personal wellness in a central location. The centre will be a place to come together and receive support and understanding from others on the same journey, filling a void for the demand started in 2014 by a small group of people looking for better health by fighting Parkinson’s with rigorous, evidence -based exercise at its core.

As Bill Peterson (secretary of the board) says Parkinson’s is always a pain but family is always welcome. As we prepare for our opening, I would personally like to thank the board members who have put in hours of volunteer time to make this happen.

In 2018 we changed how we fundraise and ditched the pay per class model. We want more people in more classes. Anything that discourages growth is not a good thing. Fees discourage growth. The community building model is a growth model. It is a new system of getting cash to run PWP.

So come on in, no fees. Participate in as many classes per week as you can, the more the better to stay healthy. Bring your family.

Donate, volunteer and get your cheque book out! We need donations and volunteers from the community to grow. One last thing I have to say, I remember, so I know you remember! You wanted class fees to be tax deductible right? Our new model of growth allows for this.

April is Parkinson’s Awareness month worldwide. It’s a perfect time to start giving monthly to keep PWP sustainable over the years to come. More and more people are being diagnosed with Parkinson’s, wouldn’t it have been easier if we had this community when you were first diagnosed?!

See you all soon!

Jillian

Change

As you have all heard we are closing in on completion of the new Parkinson Wellness Centre. (PWP=Parkinson Wellness Project)

On behalf of our board of directors I can say we are all very excited about the centre.

I can now say my dream has become true, better services for people living with Parkinson’s in Greater Victoria based on scientific research. Exercises tailored to each of you as individuals with your own challenges dealing with day to day symptoms. Choices of exercises to meet everyone’s needs and preferences.

Better yet a living room to socialize with each other as we know we learn the most from those on a similar journey. There have been so many times after classes when I just want to sit down and chat with every one of you. I know you all feel we need time to get to know each other better outside of the exercise classes. We soon will!

This all sounds totally amazing to me however I do have some anxiety due to the change. This triggered a memory of when I was 16 years old and spent a month as a counsellor in training at a Y camp in Ontario. I pulled out my evaluation form. I won’t bore you with the accolades lol! But I will tell you there is a theme here with me.  To quote my counsellor “Jillian needs to improve her self confidence in new situations. She must learn to relax in unfamiliar situations and take new experiences in her stride”

Wow is anyone else feeling the same? I may not be 16 anymore but my personality hasn’t changed!

Change is hard. Trying new things can be daunting.

Now that I am 59, I have had a lot of changes in my life, some I have expected and some not. I have learned we have to deal with the cards we are dealt with, but it’s not so easy to do. Then I remember so many quotes, here are a few. Send me yours!

-don’t be afraid to try something new, mistakes are an important part of the learning process

-unless you try to do something beyond what you have mastered, you will never grow

-life is beautiful and adventurous, life is full of experiments.

-nothing is perfect, we all learn by mistakes so keep experimenting and trying new things

-you are never too old to learn new things and to dream a new dream in life

-the more you are willing to try the more opportunities you will seize in your life

-new things can bring new opportunities

Over the last 6 years starting with ParkinGo, now PWP, changes have allowed us all to reach our goal of this centre. It really is exciting!

See you all there soon!

Jillian



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.

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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