Caregiver apps

Compiled from Caregivers for Home (have you seen their site? some great info!)… listed below are some apps to help support you during day-to-day care:

To keep all your info in one place. Log essential personal information, like insurance; set up a calendar for caregiving events; manage medications, create a contact list, and keep a medical history log… also you can share information with family members under tight security features.

Balance

For the Alzheimer’s caregiver. It offers reference and information, caregiving advice, medication management features, and up-to-date news on Alzheimer’s disease. There is also a “doctor diary” for logging symptoms and taking notes that may be relevant to the next visit.

CareZone

To share. Invite family and friends to join you as “helpers” and create a shareable task list, journal, pictures and recorded voice message.

Mobicare

To keep track of meds and symptoms  Keep a profile of the person you’re caring for and basic symptom tracking system. You can also track medications.

RX Personal Caregiver

To manage medications. Track doses, dosage, refills, and missed dose instructions. Includes a guide to over 15,000 drugs and sends FDA alerts for recalled medications.

Unfrazzle

To maintain productivity in multitasking. Features include to-do lists, journals, excellent tracking methods, and easy ways to share information with family members and friends.

Elder 411

To get expert advice. Advice categorized into 10 eldercare topics. You can add your own notes to any of the tips. This app serves as a great resource of information and advice for caregivers.

Pocket First Aid & CPR

For day-to-day and emergency needs. All content from the American Heart Association. A great resource for immediate first aid and CPR needs.

Also, check out more of my favourite apps for Parkinson’s, from the World Parkinson Congress and National Parkinson Foundation. Do you have any more to add to the list? Let me know in the comments below! much love.

parkinson bloggers: an update

I thought i’d share an update of what i’ve been reading… blogger addition.

some in this list are new, some have been mentioned HERE (parkinson blogger gals) or HERE (more parkinson blogs) but all are wonderful PERSONAL blogs about experiences living with PD.

… what have you been reading? any others to add to the list? much love.

My favourite things: More Parkinson Blogs

This week I am sharing with you MY favourite Parkinson-related blogs… earlier this week I introduced some lovely lady bloggers and here are some more of my favourites!

  1. Positively Parkinson’s by Bob Kuhn – http://positivelyparkinsons.blogspot.ca. Bob was diagnosed with Parkinson’s Disease at age 53 (2006). He is a lawyer who practices as general counsel to a wide variety of clients, in Vancouver British Columbia, and writes passionate and inspirational posts.Aging & Parkinson’s
  2. Aging and Parkinson’s and Me by John Schappi – http://parkinsonsand5htp.blogspot.ca. John was diagnosed with Parkinson’s at age 80 (2009). He researches about Parkinson’s meds, exercise and other aging-related issues that enhance the quality of life.
  3. Wearing Off – http://www.wearingoff.com/blog. A variety of bloggers write insightful posts about living with Parkinson’s.
  4. Parkinson’s Assistance Network Directory and Alliancehttp://www.parkinsonpanda.org/blog.html. Information from Jim and his P.A.N.D.A. army unites community resources from Parkinson’s patients, caregivers, and healthcare professionals. Their weekly regular posts include talking tuesday, wacky wednesday, thursday thoughts, formal fridays.
  5. Michael J Fox Foundation “Fox Feed” – https://www.michaeljfox.org/foundation/news.html. Up-to-date research and foundation news from MJFF, who is dedicated to finding a cure and improved therapies for those living with Parkinson’s today.

Again, this is just a sample of the Parkinson’s blogging out there! So, check these out and add them to your RSS feed and sign up for their updates via email!

… AND did I miss any of your favourites??  I’d love to know what Parkinson’s blogs you read! Let me know in the comments below. much love.

My favourite things: 5 (inspiring!) Parkinson Bloggers Gals

This week is BLOG WEEK… well for me anyways. I want to share with you MY favourite Parkinson-related blogs… and I’m going to start with some lovely ladies…

ladies-blog-parkinson

  1. Parkinson’s Humor by Bev Ribaudo – http://parkinsonshumor.blogspot.ca. Bev was diagnosed with Parkinson’s Disease at age 47.  Her hilarious and insightful stories are now published “Parkinson’s Humor – Funny stories about my life with Parkinson’s Disease” available HERE (tweet her @YumBev).
  2. Shake, Rattle and Roll by Kate Kelsall – http://katekelsall.typepad.com. Kate Kelsall was diagnosed with Parkinson’s disease at age 46 (1996). Now a shaky accordionist and aspiring writer, Kate’s writing is aimed at supporting and inspiring other people with Parkinson’s to continue activities, extend creativity and achieveness.
  3. Walking my Path with Parkinson’s by Marian – http://marian-pathwalk.blogspot.ca. Marian was diagnosed with Parkinson’s disease in 2006 and is currently walking the path of DBS… and taking us along with her!
  4. Most of Me Gallery by Robyn Levy – http://robynlevygallery.wordpress.com. Robyn is battling both breast cancer and Parkinson’s disease. She is a visual artist, broadcaster and writer… and overall great gal (tweet her @Robyn_mostofme). Her book, Most of Me (available here) is one of my favourite Parkinson’s lit (check out more on her book HERE and HERE)!
  5. Climbing for a Cause by Evvie Heillbrunhttp://climbforparkinsons.blogspot.ca. Another breast cancer survivor and diagnosed with Parkinson’s, Evvie is documenting her daily challenges with Parkinson’s and her lead-up to her trek to Base Camp Everest (she leaves on October 6, 2013 for Katmandu, Nepal)! Go Evvie Go! (tweet her @Evvie6).

These are only a sampling of the inspirational ladies with Parkinson’s blogging out there! So, check these out and add them to your RSS feed and sign up for their updates via email!

BONUS BLOGGER: Terri Reinhart from Studio Foxhaven Parkinson’s and Dystonia Journalhttp://studiofoxhoven.squarespace.com/parkjournal/. Terri’s creativity expresses itself as we follow her humorous writings about her path with Parkinson’s.

… AND did I miss any lovely bloggers ladies??  I’d love to know what Parkinson’s blogs you read! Let me know in the comments below. much love.

Favourite things – parkinson’s resource books: exercise

1. This book outlines not only yoga, but also covers range of motion exercises, low to no-impact aerobics, strength training, relaxation/meditation and T’ai Chi. The exercises are explained in detail utilizing safe body mechanics and has illustrated variations. This complete wellness program also offers information on home safety, fall prevention, activities of daily living, and body mechanics (including how to get up from the floor) as well as facial and voice projection exercises. It explains how each movement technique physiologically affects the body and specifically help Parkinson’s disease. (goodreads.com) Lori’s website HERE!

2. A daily guide to yoga practice designed for people with dystonia, muscle imbalance, rigidity, and spasms due to such causes as Parkinson’s, stroke, and multiple sclerosis. The focus is on rebuilding strength and flexibility as well as physical and emotional balance. The mind/body connection is woven throughout,and each chapter concludes with a brief list of why the day’s practice is beneficial along with suggestions of how to apply the poses and concepts to everyday activities. LIM (Less Is More) Yoga, it tones and stretches gently, without exertion and with an emphasis on relaxation (amazon.ca). Check out Renee’s website HERE and blog HERE – she is truly an inspiring yogini!

3. John Argue has distilled information from his classes for Parkinson’s patients into a comprehensive exercise program designed to help you improve flexibility, balance, gait, and communication. Over 100 photographs illustrate the exercises, which derive from yoga and tai chi techniques and theater movement skills. Techniques in the book encompass a variety of daily activities. This is a wonderful comprehensive resource!

4. Here is a GLOWING review from an Amazon reviewer… I couldn’t have said it better myself : “Parkinson’s patients who buy David Zid’s exercise book will have no excuse for skipping a workout regardless of where they happen to be… Unlike other exercise books, routines covered in Delay the Disease don’t call for investment in specialized equipment… The book’s design makes Delay the Disease user friendly. Each exercise is illustrated with as many as four pictures in color on heavy paper. Spiral binding makes it easy to hold the book open to the appropriate page”  It is a practical user-friendly guide. Check out his website HERE!

There are great resources to start with… what resources have you found inspiring to get you UP and MOVING with Parkinson’s? I’d love to hear from you in the comments. much love.

P.S. in case you missed it, some of my favourite Parkinson’s related-novels to line your bookshelves and bedside table HERE and general resource books HERE!

Note: click on the number to be directed to where you can buy the book (amazon.ca) OR check with your local Parkinson’s support group to see what they have in their library!

Favourite things – parkinson’s resource books: general info

1. A new book put out by the American Academy of Neurology. It’s contains up-to-date research and is directed towards all people living with Parkinson’s – including person with PD, caregiver , family members, etc. It focuses on how to discuss your diagnosis, how to ask neurologist questions, ways to relieve burden and improve quality of life … and has a great question and answer section with some really applicable questions.

2. This book is a tried-and-true resource put out by John Hopkins. It has great scientific updates re. genetics and medication, but also provides comprehensive help for day-to-day disease management. It includes some great exercise information and has an extensive description of deep brain stimulation surgery.

3. This book is written by a professional chef so it, naturally, focuses on nutrition. It explains the benefits of anti-oxidant, nutrient-rich ingredients, specific herbs and spices known to favorably impact the brain (curcumin!). All of this “food info” is complementary by her story of navigating Parkinson’s with her husband. A really great book on day-to-day challenges for those with PD and general well-eating for all foodies!

4. This has been my go-to resource on diagnosis, causes, pathophysiology, progression, disease management with an interdisciplinary focus. It is aimed at geriatricians and scientists, but written in a really well-organized and understandable language. There is a chapter on the organization of services and effective management of chronic disease, that emphasizing the importance of staging Parkinson’s disease in terms of diagnosis, maintenance, and complex and palliative care.

There are great resources to start with… what resources have you found beneficial to understanding and navigating Parkinson’s? I’d love to hear from you in the comments. much love.

P.S. in case you missed it, some of my favourite Parkinson’s related-novels to line your bookshelves and bedside table HERE!

Note: click on the number to be directed to where you can buy the book (amazon.ca) OR check with your local Parkinson’s support group to see what they have in their library!

my favourite things – parkinson’s novels

1. The imaginative, hilarious, and moving memoir of a 43-year old woman coping with both Parkinson’s disease and breast cancer. With irreverent and at times mordant humour, Most of Me chronicles Levy’s early, mysterious symptoms of Parkinson’s (a dragging left foot, a frozen left hand, and a crash into “downward dead dog” position on the yoga mat), and her life dealing with her diverse disease portfolio. Both heartbreaking and hilarious, Most of Me offers a unique glimpse into a creative mind and the restorative power of humour and fantasy (adapted from CBC books). You can check out my previous review HERE! and her wonderful blog HERE!

2. Combining his trademark ironic sensibility and keen sense of the absurd, he recounts his life — from his childhood in a small town in western Canada to his meteoric rise in film and television which made him a worldwide celebrity. Most importantly however, he writes of the last 10 years, during which — with the unswerving support of his wife, family, and friends — he has dealt with his illness. He talks about what Parkinson’s has given him: the chance to appreciate a wonderful life and career, and the opportunity to help search for a cure and spread public awareness of the disease (adapted from goodread.com). Please check out the Michael J Fox Foundation to see how you can get involved!

3. Kondrake writes a deeply personal and bracingly honest account of how he and his wife, Milly, have coped with her diagnosis of Parkinson’s disease. Milly’s passionate enjoyment of life made it very difficult for her, at the age of 47, to accept a doctor’s opinion in 1988 that the tremors she was experiencing were the beginnings of Parkinson’s disease. The Kondrackes finally came to terms with Milly’s condition and began searching for a treatment. Milly underwent several operations and has had various drug therapies, but her condition continues to worsen. She is now dependent on others for physical care and can barely communicate. Kondracke provides a harrowing overview of how organizations for other diseases such as AIDS or breast cancer compete with Parkinson’s advocates for badly needed research dollars (adapted from publishers weekly). You can check out my previous review HERE!

4. Inspired by her father’s (boxer Muhammad Ali) interaction with her children, Rasheda Ali wrote this book to address most commonly asked questions from children who may not understand why their loved ones with Parkinson’s disease behave in certain ways. Written for adults to read to children, the book encourages dialogue through the use of colorful illustrations, situations depicting symptoms, and interactive questions. Medical facts are provided at the end of each page to help readers answer children’s questions with greater ease (adapted from amazon).

*BONUS READ*

keeping my nose in the books!

Awakenings, by Oliver Sacks

The remarkable story of a group of patients who contracted encephalitis lethargica after World War I. The patients were frozen for decades in a trance-like state. The catatonic behavior of the encephalitis patients is similar to that of Parkinson’s patients, so Dr. Sacks (or Sayer in the book, played by Robin Williams in the movie version) investigates the latest advances in Parkinson’s treatments. In 1969, Dr. Sacks/Sayer gave them the then-new drug L-DOPA, which had an astonishing, explosive, “awakening” effect. However, patients who are treated with the drug develop a tolerance for it, and soon his patients return to their former state. Dr. Sacks recounts the moving case histories of his patients, their lives, and the extraordinary transformations which went with their reintroduction to a changed world. I love Robert De Niro’s character Leonard Lowe in the movie version (see the trailer below)!

HAPPY READING! much love

**note: click on number to be taken to where you can purchase these great reads!

my favourite things – yoga for surfing

We are heading up to Tofino to celebrate the long weekend (and my 29th birthday!), so I thought I’d share some of my favourite things about surfing…

Since moving to Vancouver Island, we’ve been giving surfing a try.

Our first surfing experience was in Lagos, Portugal during one of our European adventures when Darc was living in Germany.

Lagos, Portugal (April, 2008)

After that, we made the 10-HOUR trek from Kelowna to Tofino for a weekend surf trip.

Keeping warm in Tofino, BC (November, 2010)

Me and my softop in Tofino, BC (November, 2010)

Now that we are living on the island , we’ve been gearing up and catching some waves (errr, well whitewash for me anyways).

wetsuits and a salty-bulldog in SUNNY (!!) Tofino (Aug 2012)

Now, the North Pacific is COLD andWET (hello! rainforest!), but, that doesn’t mean it can’t be fun! If you’re going to get wet anyways, you might as well do it in a 6mm wetsuit with a hood, gloves and booties!

YOGA is another great way to get ready for a surf weekend. Here are some of my favourite surfing-related yoga poses…

  1. Garudasana (Eagle Pose). To stretch out your upper back and shoulders for a big day of paddling!
  2. Chaturanga (Four-limb Staff Pose). For everything! Your pop-ups will improve like nobody’s business!
  3. Shalabhasana (Locust Pose). To strengthen back, abdominals, and to help look up while paddling out!
  4. Malasana (Garland Pose). To open hip flexors and lower back for long sessions of sitting on your board waiting for the perfect waves!

*You can sequence these together, for example: 1) start with eagle on each side, holding for 5-6 breaths. 2) step out and fold forward, (bend your knees to keep your back long!). 3) ground the palms of your hand on either side of your feet and step/jump back into high plank pose (knees down is great for building core and upper body strength!). 4) slowly lower to staff pose – hover (don’t collapse!) about 1inch off the floor. hold for 5-6 breaths. 5) lower to the ground. 6) placing chin on the mat and arms along the side of your body, lift legs into locust (one at at time is great for building strength!). 6) push through hands and knees and come up to standing. place feet mat-width apart (place heels on a rolled up towel if necessary!) and drop down in garland. hold for 5-6 breaths.

So get out there and stretch out before you wax up! much love.

P.S. like surfing? check out what I’ve been up to, and island living

my favourite things – new winter/rain wear

i’m starting a new regular post called “my favourite things“.

there is so much stuff & information out there and it’s hard to know what’s worthwhile. Whether it’s yoga gear reviews, Parkinson’s resources, or basic clothes and shoes, I’ll share my humble opinion and let you know what I’m interested in!

Having recently moved to Victoria, I’m bracing myself for the “winter”, or as they like to call it here “the rainy season“. Having lived in the SUNNY & DRY Okanagan Valley for the last 4 years, I’ve had to reconfigure my outdoor/walking-levon/going-to-school/riding-the-bus wear… so, here’s what I’ve come up with (click on the corresponding numbered links below for more info):

1 – 2 – 3 – 4

Whadya think? Bring on winter rain!

much love.