the power of music in Parkinson’s

i love music. i love finding new songs, bands, genres, instruments, etc. I wasn’t blessed with natural musical talent, like a greater part of my family, but i still have the passion and ear for it. music has the powerful to lift my spirits and inspire, and i love sharing this with others.

my first attempt at music, piano recital (1990)

my brother Jesse, the guitarist (1989)

aunt jen, grampy and dad playing tunes (1996)

music is used as a form of therapy and self-expression in a variety of medical conditions. music therapy has demonstrated significant improvements in persons with PD, especially for bradykinesia (stiffness), daily activities such as eating and dressing, falls, emotional well-being and quality of life.

music is also shown to improve rhythmic limb movements, walking and freezing in PD; and combined with physical therapy can have improved effects. music can act like a rhythmic cue or timekeeper that can stabilize the internal rhythm formation process and sequencing, such as initiation, execution and cadence. also, music can evoke strong emotional and motivational responses.

watch this video of a person’s with PD who is very stiff and rigid, with a shuffling gait at the beginning, and once the music turns on is able to “boogie”! pretty incredible!

Dr. Oliver Sacks is an author, physician, and professor of neurology/psychiatry
who was involved in the first administration of Levodopa for people with post-encephaletic Parkinson’s. enjoy this clip of him speaking on the power of music for PD…

if you are interested in learning more, here’s a selection of articles to check out…

so, crank the tunes and enjoy the beat! much love.

love your shoulders

i had another amazing workshop with the lovely Jay Fields (see earlier post on standing stronger & softer) at Trinity Yoga Centre.

Jay Fields (revelationaryliving.com)

This session focused on Downward Dog… a pose commonly used to visualize hatha yoga. It was an opportunity to explore the shoulder girdle, psoas, muscle of the lower legs and feet – and generally feel the interconnectedness of the body. It’s amazing to stretch the bottom of your feet and see it translate to spaciousness in your downward dog!

One aspect that resonated with me was the feeling of “intimacy with your posture”… the more you are intimate with someone, the more you love ALL their parts. This translates to your yoga practice as well, the more you “get to know” your posture, the more you begin to love the softness and openness, as well as the struggles.

a nice big yoga hug

the shoulder girdle is amazing in that the clavicle, scapula and humerus are only connected to the axial skeleton (spine) at the sternum! and what do you think happens when we have a stress-response… we hunch forward to find/protect that stable spot.

the shoulder girdle

we explored “putting our girdle on” or creating a stable shoulder, as well as stretching the wrist and forearms (which Jay so warmly referred to as “throwup series” because of the intense stretch and nerves) and lower legs (which, surprisingly, impact your downward dog more than you would think).

so, i put my “girdle on”, firmly planted my hands/fingers, softened my hip flexors, engaged core, moved inner thighs back, and released my heels towards floor… what do you think?

after 3 hours of working my TIGHT shoulders...

now, working towards strong stable shoulders

thank you Jay for, again, bringing more openness to my yoga practice. can’t wait to see you again in the fall! much love.

p.s. all this new knowledge about how to stretch and strengthen the shoulder girdle will really come in handy for paddling the Bowron Lakes next weekend 🙂

Love, Politics & Parkinson’s disease

well, I finally got around to reading the book Saving Milly: Love, Politics, and Parkinson’s disease by Morton Kondrake, an American political commentator and journalist (his wiki page).

reading at Minnow Lake

it’s an honest insight about caregiving, funding, politics, research and love in the face of Parkinson’s disease.

In 1987, Milly notices that she can’t write a normal K and that her handwriting is becoming cramped (micrographia). She also notices a numbness in her fingers. At the age of 47, Milly is diagnosed with Parkinson’s disease.
It chronicles their challenge through diagnosis, medication, complications, TWO surgeries, research, political advocacy for research funding… all in the name of a cure, but more importantly, love.
CBS made it into a tv-move in 2005, and you can watch it over 9-clips on YouTube, and/or watch the first 35-seconds of this one to get a synopsis…
i hope it inspires other to join the fight for PD, and advocate for better care/resources, research funding and ultimately a cure. much love.

to Toronto and back again

well, i’m back from Ontario after a wonderful trip! I landed and immediately went to a beautiful wedding (congratulations Jer & Jess Bellamy!). After, I headed to the 15th International Congress for Parkinson’s disease and Movement Disorders.

fueling up at MoonBeans and planning out my conference sessions

During the conference I got to take advantage of Toronto’s newest mode of transportation!

bixi.toronto

I took sessions on genetics, non-motor complications (especially cognitive changes and mood disorders), environmental factors, gait impairment associated with PD… and was able to share my research on frailty in PD (see poster here).

presenting my research poster

I also got to sneak a few moments with some old friends over dinner, drinks, and delicious freshly-made donuts!

patio-time with pip and laura

at nicki's coffee shop with pip

… and it’s always nice to know you can find a bit of peace and community wherever you are!

moksha yoga downtown

After the conference headed a bit more east and spent the weekend visiting family, friends and their new additions! It’s always so nice to reconnect with those who are close to you, but don’t see often!

Now I am back in Kelowna and ready for my next adventure! much love.

self-care

The Parkinson Society British Columbia (website here) has a much needed initiative this year to support workshops for caregivers of persons with Parkinson’s disease,

Time Out for Caregivers.

Lonnie Ali caring for her husband, Muhammad, who has Parkinson’s disease

I was asked to be the keynote speaker at their second workshop in Kelowna on May 26th and was so honored to be able to share the afternoon with these amazing men and women.

I was able to relay to the participants about the importance of their health and how there are buffers that reduce caregiver burden, especially :

  1. being prepared to be a caregiver
  2. fully accepting and finding meaning in the caregiver role, and
  3. establishing a quality relationship with the person you are caring for
The main cause of PD caregivers burden is not always the physical tasks they have to do, for example helping a person in and out of bed, feeding, more household chores, etc., but the mental worry… about safety of their spouse or if they have to make big decisions alone, like when to sell the house and/or move into assisted living, legal powers of attorney, etc.

when your direction in life changes… http://www.cartoonstock.com

Some of the information I hoped to convey was that caregivers need to care for themselves!
  • Don’t suffer and try to set boundaries, if there’s a task that’s too much or something you don’t want to do – ask for help! find support! If you need some “me-time” or “me-space” create that. Be assertive! This may involve finding your voice or an advocate.
  • Don’t give up on activities you like to do! Modify so you can still keep active and interested in life together… remember the disease doesn’t define you!
  • Sustain yourself… caregivers are like lifesaving equipment, you don’t want to burn out. It’s like when you’re on an airplane and you are support to put YOUR oxygen mask on before helping others.

  • find someone that can cheer you on and lift your spirits… and don’t forget to celebrate all the small joys. The facilitator for the Kelowna Parkinson’s support group tells everyone to write down THREE things you are grateful for everyday. Doesn’t matter if they are big, small or inbetween! Then, at the end of one year you will have over ONE THOUSAND things to be grateful for… pretty amazing, eh?

check out this novel that chronicles gratitude by Ann Voskamp

I understand this is easier said then done, but getting caregivers to focus on self-care is a great start! I am so grateful for the participants who attended the workshop and to the Parkinson’s Society for starting this initiative, you can contact them at: info@parkinson.bc.ca for further information. A copy of my presentation slides are available by clicking here… please share!


and this is not only applicable to PD caregivers, but everyone…when was the last time you checked in with yourself to see how you were really doing? much love.