16 things I would want, if I got Dementia by Rachael Wonderlin

(c) 2014 opiekaseniora.com

(c) 2014 opiekaseniora.com

[ the full article can be seen at Rachael Wonderlin’s blog www.dementia-by-day.com and LinkedIn ]

Rachael Wonderlin, of the blog dementia-by-day, discusses her fears around living with dementia and shares a beautifully written list of rules to hang on your wall and live by. It seemed too well-written to not share!  much love.

  1. If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
  2. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
  3. If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
  4. If I get dementia, ask me to tell you a story from my past.
  5. If I get dementia, and I become agitated, take the time to figure out what is bothering me.
  6. If I get dementia, treat me the way that you would want to be treated.
  7. If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
  8. If I get dementia, don’t talk about me as if I’m not in the room.
  9. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
  10. If I get dementia, and I live in a dementia care community, please visit me often.
  11. If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
  12. If I get dementia, make sure I always have my favorite music playing within earshot.
  13. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.
  14. If I get dementia, don’t exclude me from parties and family gatherings.
  15. If I get dementia, know that I still like receiving hugs or handshakes.
  16. If I get dementia, remember that I am still the person you know and love.

Community Scientific Talk: Dr. Erich Mohr from Medgenesis Therapeutics

There is a new trial in the UK that is testing whether a drug called GDNF has the potential to slow the course of Parkinson’s, which is something no current treatment can do. Harnessing growth factors, such as GDNF, is though to help dopamine-producing nerve cells from dying in the Parkinson’s brain.

This trial is sponsored by Parkinson’s UK, with support from the Cure Parkinson’s Trust and in association with the North Bristol NHS Trust. Medgenesis Therapeutix Inc. is the company providing the GDNF and placebo.

You can find out more about the clinical trial from Parkinson’s UK HERE and from Medgenesis HERE.

Lucky for us, Medgenesis is based in Victoria BC and next month ParkinGo is hosting a community talk with Dr. Erich Mohr, founder, chairman and CEO! Looking forward to all Dr. Mohr has to share about the potential benefits of GDNF for Parkinson’s! See you there – much love.

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Muhammad Ali: still the greatest (… and hanging with Snoop Dogg!)

Even though his famous shuffle is no longer famous for his quickstep but more for it’s slow wobble, Muhammad Ali is one of the most loved sports figure in history.

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Muhammad Ali

Ali, aged 72, made the news recently (Dec 6, 2014) with his appearance at his grandson’s high school football game… sitting with Snoop Dogg! (see a video of them together HERE)!

It may be sport’s biggest irony is that one of it’s biggest mouths, now has a quiet speech and a masked face. However, he continues to inspire and spread his message. His Muhammad Ali Parkinson Centre provides neurological, outreach and education programs to people with Parkinson’s in Phoenix, AZ. And his wife inspires caregivers all over the world – check out her interview with AARP HERE (June 2014).

… and with quotes like these below, there is nobody like him. much love.

‘Float like a butterfly, sting like a bee, his hands can’t hit what his eyes can’t see’

‘It will be a killer, and a chiller, and a thriller, when I get the gorilla in Manila’

‘Frazier is so ugly that he should donate his face to the US Bureau of Wildlife’

‘I said a lot of things in the heat of the moment that I shouldn’t have said. Called him [Frazier] names I shouldn’t have called him. I apologise for that. I’m sorry. It was all meant to promote the fight’

‘If you sign to fight me, you need speed and endurance but what you need most is to increase your insurance’

‘Boxing is a lot of white men watching two black men beat each other up’

‘Nobody has to tell me that this is a serious business. I’m not fighting one man. I’m fighting a lot of men, showing a lot of ’em, here is one man they couldn’t defeat. My mission is to bring freedom to 30 million black people’

‘If he [Henry Cooper] gives me jive, he’ll fall in five’

‘I’m so fast that last night I turned off the light switch in my hotel room and got into bed before the room was dark’

the myth of multitasking

Multitasking is a misnomer.

The brain can focus only on one thing at a time. We take in information sequentially. When we multitask, we actually switch back and forth between tasks, paying less attention to both. And, each time you switch tasks, your brain has to run through a complex process to disengage the neurons involved in one task and activate the neurons needed for the other.

Research shows that switching back and forth between tasks takes 50% longer to accomplish the task and results in 50% more errors.

We cannot concentrate in the same moment on two distinct, input-rich activities that require our attention – for example, carry on a conversation and text at the same time without losing information and time.

However, our brains may be wired, and even addicted, to multitasking and distraction. Successful multitasking activates the reward circuit in the brain by increasing dopamine levels—the brain chemical responsible for feelings of happiness (like the rush you feel when you win at the casino). So, we may not even notice we are making mistakes because it feels good! Multitasking also increases the release of adrenaline and stress hormones, which has implications for short-term memory loss (making it harder to retrieve information later) as well as long-term health problems.

Rather than divide our attention between tasks, it may be more effective to take frequent breaks between intervals of sustained, one-pointed attention. Like a 10-minute break every hours to do something for yourself (take a walk, do some deep breathing – tutorial HERE).

More of my thoughts on mono-tasking in general HERE, while having a conversation HERE, eating HERE, brushing my teeth HERE

So, “When you are walking, walk. When you are sitting, sit.” much love.

 

References:

Kripalu Thrive Blog (Oct 7, 2014)

Real Happiness at Work, by Sharon Salzberg (Workman Publishing, 2014).

 

 

 

microglia: the key to Alzheimer’s? A new study.

microglia cells are the immune defence for central nervous system (brain + spinal cord). They are extremely sensitive and monitors suspicious activity – and similar to garbage collectors, microglia scavenge for dead, damaged and/or infectious cells … like “A-beta” which accumulates and clumps together to form “plaques” implicated in Alzheimer’s disease (AD).

A new study from Stanford University published in The Journal of Clinical Investigation (Dec 8, 2014) shows that microglia malfunction may be responsible for toxic inflammation and the accumulation of dead/toxic nerve cells in the brain of someone diagnosed with AD.

 

Evidence from this study is thought to demonstrate that by blocking a single molecule (… and prostaglandin signalling) on the microglial cell, they can restore the microglial cells’ scavenging function… and by restoring the microglial cell scavenging function, it will go back to doing its job as a ‘garbage collector’ and remove the damaged and infectious cells – like those plaques that are implicated in memory loss, cognitive dysfunction and AD. NOTE: this study is conducted in mice, so that leaves a lot of work ahead to determine whether it’s relevant to human brains.

If you’re interested in reading more, and how this relates to taking aspirin, you can read Stanford’s press release HERE or the full study HERE. … Exciting and promising results! much love.

An intimate look at caring for Parkinson’s disease from TIME Magazine

Every month, in their series “Taking Care”, Times Magazine does a article covering the lives of caregivers and the people they care for. This month, they take an intimate look at Parkinson’s disease.

(time.com)

The article, and accompanying video (HERE), depicts the life of Eleanor Copeman. How her story was one of vibrant, joyful cook, dancer and matriarch who gradually became dependent on her daughter and husband when her Parkinson’s disease, and eventual dementia, became too much. They discuss challenges associated with caregiving, including the role change from daughter/husband to caretaker, and the intensity and vigilence required.

The video of photos, done by Abbie Kraftowitz, depict the daily live of this family as Eleanor progresses. It is a really powerful video about love – you can watch it here: http://wp.me/p5HMd-f4OK

much love.

 

Long, active and happy life as a yogi

I’ve written about yogini’s who are young at heart (here), and Tao Porchon-Lynch is one of these amazing women who, at 96, holds the guiness world record as the world’s older certified yoga teacher (in Westchester County, New York).

In an interview with Yoga Journal, Tao shares some of the wisdoms she’s learned over the years.

(yogajournal.com)

(yogajournal.com)

Tao credits “breath“, more important than asana, in keeping her young: “Breathing is more important than anything else—poses that are not done correctly are not going to help. It’s how much you can feel the breath moving throughout your body. If you’re in touch with the breath inside you, there’s nothing you can’t do.”

And, her secrets to a long healthy life?: “I don’t believe in getting old. In America, look how many beautiful trees are hundreds of years old. They are losing leaves but they are not dying—they are recycling. In a few months, spring will start up again. You can learn so much from nature.”

Tao Porchon-Lynch’s 5 Rules for a Long, Happy Life
1. Don’t procrastinate—tomorrow never comes.
2. You can’t believe in something if you only do it halfway.
3. Each day, whatever is in your mind materializes.
4. Never think about what can go wrong. I know my best day is every day.
5. If you wait for something good to happen, it will. Don’t look for tragedy.

… an example of how it only gets better with age! much love.

(J.D. Friedman, yogajournal.com November 20, 2014)

 

Upcoming Campbell River BC events!

 

Join ME for back-to-Back events in Campbell River! I will be speaking with caregivers on Tuesday Dec 9th about how to manage ‘healthily’ as a caregiver and improve self-efficacy; and on Wednesday Dec 10th, I’ll be discussing how are muscles work, how that is impacted with Parkinson’s disease, and how exercise (incl. yoga) can help!

…. looking forward to seeing you there! much love.yogadopa-parkinson-campbell-river

gerontology in Washington DC – bits and pics 11/12

 

… are you ready for an onslaught of photos?

I spent last week in Washington DC at the Gerontological Society of America’s scientific meeting. It was a really well run conference, with so many sessions to choose from and high-quality research presented. It was nice to catch up with old friends and colleagues too! I presented some of my work on “caregiver’s perspectives on the meaning of activity in persons with dementia“, and was grateful to be awarded the Douglas Holmes Quality of Care interest award from the research on Quality of Care interest group.

I was able to sneak away one afternoon and explore some of the monuments and the Art Gallery. What an amazing city, with so much to see and do! And the weather was sunny and mild. Perfect for walking miles to see everything! Have any of you been to Washington DC? I can’t wait to go back to see the monuments I missed and go to the Smithsonian museums.

Ok, here they are! Enjoy scrolling… much love.

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Niagara (in the) Fall[s] – bits and pics 10/12

I had the chance to present some of my research at the Canadian Association on Gerontology’s annual Scientific Meeting. I’ve been attending this conference for 4+ years, and truly value the connections I’ve made through this organization. It’s so nice to see familiar faces year after year, and recognize all that my peers have accomplished! I was also excited because the conference took place in Niagara Falls Ontario – and enabled me to have a nice visit with my Dad & Cindy (’cause it’s been far too long since I’ve seen them!) and a close friend from University.

If you’re interested in reading my abstract – I’ve included it below the pics. Those fall colours, though, were beautiful! much love.

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ABSTRACT: Meaningful activity differences in spouse compared with adult-children dementia caregivers
Caregivers’ social-identity is tied to that of the care-recipient, and may be undermined in dementia. As such, engaging in meaningful activities may help both caregivers and persons with dementia. This study explores meaningful activity defined by spouse and adult-child dementia caregivers.
A larger research program recruited caregivers of persons with Alzheimer’s disease, vascular, frontotemporal, and Lewy Body variants taking cholinesterase inhibitors (ChEI). Caregivers provided minimum 3hours of care over 3 days/week. In-person interviews were completed 6-months after ChEI onset. This study compared spousal (n=640) and adult-children (n=265) responses to the open-ended question “What do you believe getting involved in activities outside the home means for someone with dementia?”. The answers were transcribed and phenomenological thematic content analysis was completed.
Spouse caregivers identified meaningful activities as beneficial to the couple, including: social engagements as a couple, broadening both persons lifestyle, maintaining interrelationships with others, and sense of social normalcy. Spouse caregivers related activity participation to self-worth. Spouses provided care in earlier stages, where care-recipients may be more aware of dementia symptoms. Increased social anxiety, frustration and embarrassment in public were reported.
Adult-children caregivers identified meaningful activities as interaction with peers. For adult-children, meaningful activities included opportunities for parents to relate to their peers, companionship, and independence. Adult-children provided care in later stages, where participation in activities alleviated reliance on the caregiver and enabled personal-time and breaks from care duties.
Caregivers’ views on meaningful activity differed depending on their relationship. This new knowledge may indicate areas for improved activity provision and support.