“Taking Care of You” – chapter one from “Caregiver Helpbook”

Organizations around the US, including Family Caregiver Alliance in the Bay Area (caregiver.org), teach a course called “Powerful Tools for Caregivers,” developed by an organization in Portland.  You can read general info about the self-care education program for family caregivers at powerfultoolsforcaregivers.org.  The course is designed to help “family caregivers develop a wealth of self-care tools to: reduce personal stress; change negative self talk; communicate more effectively in challenging situations; manage their emotions; and make tough caregiving decisions.”

As part of the course, class participants receive a copy of a book titled “The Caregiver Helpbook.”  The book is available in both English and Spanish for a reasonable cost ($30).  Brain Support Network volunteer Denise Dagan is reading the booklet and will be sharing the highlights, chapter by chapter.

The title of chapter one is “Taking Care of You.”  As the book’s author notes:  “Research studies find high rates of depression and anxiety among caregivers and increased vulnerability to health problems.  They often feel they have no control over events – and that feeling of powerlessness has a significant negative impact on caregivers’ physical and emotional health.”

Chapter one offers suggestions on how you can take care of yourself, as a caregiver.  You’re more likely to be a loving and patient caregiver when you meet some of your own needs.

Here’s Denise’s report on chapter one.

Robin

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Notes by Denise

The Caregiver Helpbook
Chapter One – Taking Care of You

“When you board an airplane, the flight attendant gives several safety instructions.  One of them is, ‘If oxygen masks drop down, put on your oxygen mask first before helping others.’  This is because if you don’t take care of yourself first, you may not be able to help those who need your help.  Its the same thing with caregiving.  When you take care of yourself, everyone benefits.”

A caregiver shares her healthy caregiver perspective:  “To some degree I recognized that caregiving was like a job and my goal was to find the best way to get the job done.  A friend also told me that doing any job well – including the job of caregiving – requires four things:
1. Recognizing you can’t do everything yourself – you work with others.
2. Taking daily breaks.
3. Taking vacations to renew oneself.
4. Being realistic about what you can do.”

You’re more likely to be a loving and patient caregiver when you meet some of your own needs.

Here is the “Powerful Tools for Caregivers” step-by-step guide for setting goals to meet your own needs:

First, write down a few things you would like to be able to do, like exercise, get to church, or read.  (Indicate which you would like to work on first.)

Second, brainstorm all the different things you might do to reach your first goal.
“Its important not to assume that an option is unworkable until you have thoroughly investigated it or given it a try.  Assumptions are major self-care enemies!”  (Indicate two or three options that seem most do-able, and select one to try first.)

Third, turn your option into a plan of action.  That has five steps:

1. Decide what you want to do.

Think about what is realistic and reachable in a week, to avoid frustration.  “An action plan starts with the words, ‘I will…’  If you find yourself saying, ‘I’ll try to…,’ or ‘I have to…,’ it probably isn’t something you truly want to do.”

2. Make your plan behavior-specific.

“Taking better care of myself” is not a specific behavior.  Making an appointment for a physical, or walking three times a week, is.

3. Think it through.

Answer these four questions:
– What are you going to do?       I will take a walk.
– How much will you do?             Will you walk two blocks or for 20 minutes?
– When will you do this?              What time of day can you walk?
– How often will you do this?      Three times a week? (Monday, Wednesday, and Friday)

A common mistake is to be overly optimistic.  Its better to plan to do something once or twice a week and exceed your plan than to add pressure, disappointment, and stress.  Remember, this is supposed to help you take care of yourself, so plan for success!

4. Determine your confidence level.

With your plan in mind, on a scale of 0-10 (with 0 being not at all confident, and 10 being totally confident), how confident are you that you can get in that afternoon 20 minute walk three times this week?  If your answer is 7 or higher, your plan is probably realistic and achievable.  If not, something probably needs adjusting.

5. Write down your action plan.

Writing it down helps us to remember and solidifies the agreement we’ve made with ourselves.  “Keep track of how you’re doing.  Write down problems encountered.  Check off activities as you accomplish them.  If you make an adjustment in your plan, make a note of what you did.”

At the end of the week review how things went.  “Are you nearer your overall goal?  How do you feel about what you did?  What obstacles or problems, if any, did you encounter?”  This is a good time to work out the kinks.

Problem Solving Your Action Plan:
– Clearly identify the problem.
– List ideas to solve the problem.
– Select one to try
– Assess the results.  Every week reassess: Identify any problems, brainstorm solutions, try one solution, and keep tweaking the plan until you have a new routine and are well on your way to a happier, healthier you.
– Accept that the problem may not be solvable now. Not all goals are achievable at this time.  Make a plan for the next goal on your list and try implementing that one.

Don’t forget to reward yourself!  Putting a more pleasant routine in place can be its own reward, but, “its important to find healthy pleasures that add enjoyment.  They don’t have to be fancy, expensive or take a lot of time.”  Catch a movie, your favorite TV show or sports.

The end of chapter one has a sample action plan and a blank worksheet for personal use.  It clearly states each step with space to fill in your goal, action plan, confidence level, and a check list for each day of the week with a comment section to keep track of your activity, obstacles, and adjustments.

– Denise

Complementary and Alternative Medicine Webinar – Notes

Last week, the Michael J. Fox Foundation (michaeljfox.org) hosted a one-hour webinar on complementary and alternative medicine for Parkinson’s.  Actually, it was a re-broadcast of a webinar they presented in May 2015.

Complementary and alternative medicine (CAM) is the term for medical products and practices that are not part of standard care.  Topics covered in the webinar include acupuncture, herbs, vitamins, and diet.

You can find a link to the webinar recording here:

www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=22&e=1361202

The webinar featured a Parkinson’s patient, Gary Vallat; a neurologist, Danny Bega, MD, from Northwestern; and a research scientist, Laurie Mischley, ND, MPH from Bastyr University.

Brain Support Network volunteer Denise Dagan listened to the webinar recently.  Here are her big takeaways, which apply to the disorders in our BSN group as well:

Stress exacerbates symptoms of Parkinson’s disease.  It is, therefore, generally agreed that complementary therapies that reduce stress alleviate Parkinson’s symptoms.  This can include massage, acupuncture, yoga, meditation, etc.

Dr. Bega discussed a small study where half did hatha yoga and the other half did conventional resistance exercise (weights).  Both groups’ mobility benefited as well as non-motor symptoms (mood, anxiety, sleep, quality of life).

People reporting loneliness are those doing the worst, symptomatically.  Those staying active and social have a better quality of life.  Support groups should be a part of the medicine to treat PD.

There is no definitive evidence showing the benefit of one vitamin or supplement, just some animal and lab indicators that have been disappointed when applied to humans.  Best course is to minimize inflammation, maximize nutrient density, energy production, and eat for a healthy microbiome (intestine/gut).  That means eat healthy oils (coconut and olive), fish (omega 3 fatty acids), nuts and avocado, colorful fruits and vegetables for their antioxidant properties, and yogurt (minimal dairy).

PD may be, in part, a metabolic disease.  Alzheimer’s was recently termed, “Type III Diabetes,” because the AD brain is not effective at turning glucose into energy.  PD is similar when given a bunch of carbs, so eating more healthy fats and proteins makes PD brains more energy productive.  That could go a long way in fighting fatigue, a common symptom of PD.

Denise’s full notes are copied below.

Robin

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What’s the Alternative?  What to Know about Complementary Medicine for PD
Webinar Host: The Michael J. Fox Foundation
May 21, 2015 – rebroadcast March 17, 2017

Dave Iverson interviews: Parkinson’s patient, Gary Vallat; neurologist, Danny Bega; and assistant research scientist, Laurie Mischley.

What we’ll cover today:
* What do we mean by complementary and alternative medicine?
* What practices may help manage Parkinson’s symptoms?
* What do we know about the effects of supplements on Parkinson’s?
* Can a specific diet make a difference?
* Why is it difficult to study the effects of alternative approaches?

What do we mean by complementary and alternative?
Complementary and alternative medicine (CAM) is the term for medical products and practices that are not part of standard care.  More current thinking is ‘integrative medicine,’ which is using what works, regardless of the terminology.
– Complementary medicine is used together with standard medicine.
– Alternative medicine is used in place of standard medical care.
– These methods still should be evaluated for safety and efficacy.

There are five domains of CAM:
* Biologically based approaches (diets, herbs, vitamins)
* Manipulative and body-based therapies (massage, chiropractic, osteopathy)
* Energy therapies (magnets, Qigong)
* Mind-body interventions (yoga, spirituality, relaxation, meditation)
* Alternative medical systems (homeopathy, naturopathy, Ayurveda)

Gary Vallat found benefit from acupuncture and when that resulted in immediate response.  APDM has a wearable device that shows measurable tremor which has shown marked reduction for Gary during acupuncture, sleep, and in a sweat lodge.

What do we know about the efficacy of acupuncture?
* It is better studies than other CAM, some with placebo controls.
* It is safe.
* Anecdotal reports are positive.
* Effect on mobility, rigidity, tremors are mixed because those with placebo controls showed less measurable results which could be due to insensitive measuring devices.
All results show short term benefit.

How can Meditation, Yoga and other Activities Help Manage PD?
* Practices that help alleviate and manage stress – which exacerbate Parkinson’s symptoms – can help ease symptoms.
* Activities such as meditation and yoga can also help reframe the impact of symptoms, allowing a level of acceptance.
* These methods encourage personal empowerment.
* Group activities and socialization can discourage isolation.
* Yoga has shown impact on mobility, anxiety and quality of life.
* Creative pursuits – painting, writing, dancing, playing music – are also stress relieves and can boost self-confidence.

Stress increases PD symptoms, so anything that relaxes you and relieves stress will relieve PD symptoms.

Laurie Mischley cites a study of heart rate variability being correlated with non-motor symptoms (notoriously under treated by conventional therapies – ex: OH, saliva, bowel issues).  Studies show improvement of heart rate variability during tai chi, yoga, and meditation.  That means technology is catching up with anecdotal evidence.

Dave Iverson asked about wearable devices providing a continuous source of physical information.  Laurie Mischley says technology may not be the best source of efficacy.  She is working on a patient-reported outcome measure (33 questions) about bowels, handwriting, sleep, etc. because they are better at assessing the severity of their disease than any scales or tools currently available.

Dave Iverson asked about the benefits of yoga from Danny Bega’s research.  He had 20 participants with PD.  Half did yoga twice a week for 12 weeks.  The other half did conventional resistance exercise (weights).  They were looking at effect on both motor & non-motor symptoms.  They found benefit in both groups in terms of mobility, as well as non-motor (mood, anxiety, sleep, quality of life).

A viewer asks if it must be a particular type of yoga.  Danny Bega says they used and suggests Hatha Yoga because it is easier and can be adapted by using props, chairs, etc. for PD.  Don’t use hot yoga because of blood pressure issues in PD causing dizziness or lightheadedness.

Dave Iverson asked Gary Vallat about the importance of activities which encourage personal empowerment and discourage isolation.  He does find a personal tendency to withdraw but committing to exercise and social commitments draw him out and keep him engaged in social ways and moving.  He also works with a physical therapist and weight training exercise.

Laurie Mischley collected online data from 750 people around the world called CAM care in PD hoping to gather data about the effect of diet, but received many reports of loneliness.  People reporting loneliness are those doing worst, symptomatically.  Those staying active have a better quality of life.  Support groups should be a considered part of the medicine to treat PD.

What should we know about dietary supplements?
* You shouldn’t self-medicate:  Talk to a physician or dietitian about supplements you’re interested in.
* It may not be a one-size fits all:  Just like traditional medications work differently for people, supplements may have varying levels of benefit.
* There can be side effects to natural medications: Too much of something natural may cause adverse effects.
* Natural supplements may have a place in your treatment regimen:  With proper precautions, some additions may be beneficial.
> Case study: Antioxidant coenzyme Q10 showed no clinical benefit in a Phase III study.

CoQ10 was funded because there was a lot of data showing potential benefit.  One Phase III study was pulled as non-beneficial, but the methodology should be reviewed and FIA measure of CoQ10 shows 30% of people with PD have deficiency.  Among the people deficient, would they benefit from CoQ10?

It seems everything studied for disease modification have failed.  Possibly because disease modification trials are restricted to people who are not on dopamine, but if we know the brain needs dopamine it doesn’t make sense to restrict access to something they know is needed for proper function and measuring if something else makes a difference.  You can’t keep a boat from sinking if it has a lot of holes in the bottom, by plugging just one hole.  Maybe dopamine with CoQ10 would show benefit.

What do we know about nutritional supplements, like vitamins?
We know very little from actual evidence.  There is some animal data.  Turmeric slows deterioration of cells.  Similar things have been shown with coenzyme Q10, vitamin E, and creatine, but there’s a difference between animals and humans, so benefit in humans has been disappointing.

A healthy diet in general but with focus on some of what we know causes PD, like inflammation in parts of the brain, and free radicals that cause cell damage and antioxidants that bind to those and keep them from causing damage.  So beneficial fats, colorful vegetables and fruits, but that’s good for everybody.

Can diet impact Parkinson’s?
What do we know about:
* Antioxidants
* Anti-Inflammatory Foods
* Dairy
* Sugar
* Gluten and Carbohydrates
* Spices
* Beans
* Protein
* Fiber
> Speak with your physician or a dietitian before changing your diet.

Gary Vallat is gluten free, sugar restricted, added antioxidant supplements, but doesn’t know what’s helping his PD, but they are healthful.

Danny Bega recommends for everyone staying away from pro-inflammatory foods like simple carbs, red meat, hydrogenated oils.  What we don’t know is if that contributes to inflammation causing damage in PD, but it makes sense to reduce those foods in case it does.  Reducing those foods is a healthier diet which should increase energy and reduce fatigue, which is a big issue in PD.  Not all dairy is bad, but high fat dairy can be inflammatory.  Dairy with vitamin D is preventative for fractures in falls.

Laurie Mischley says it is known that fruits, vegetables, fish, and beans that reduce risk of PD, but dairy (not yogurt!) increase risk of PD.  Eating dairy will not accelerate PD.  The importance of the micro biome and gut health may reduce risk of PD, reduce symptoms in PD, and improve resistance to everyday illness like colds and flu.  Feeding your micro biome nutrient dense, plant based foods keeps your micro biome healthy.  Also, abdominal obesity and micro glial activation in the brain is easily modifiable by eating nutrient dense foods.

35 years ago PD brain autopsies showed a deficiency in the brain’s main antioxidant, glutathione.  Since, we have learned in animal and laboratory models low glutathione leads to mitochondrial dysfunction, free radicals, loss of dopamine, and cell death.  Maybe we should be giving people with PD glutathione, but it is not orally available.  In 1996 Italy did a small, unblinded study giving intravenous glutathione twice daily for 30 days and found 42% reduction of PD symptoms that lasted a couple months past the last dose.  2009 US researchers tried to duplicate this with minimal effect.  Laurie is using intra-nasal glutathione in a current study as cheaper, and easier to administer with good results and some clinical benefit.  MJFF is funding 2 follow up studies showing target validation and moving toward phase II trials.

Viewers are asking about fava beans and mucuna (Indian legume) because they contain natural levodopa.  Anecdotal reports of improved ‘on’ time after eating fava beans or mucuna.  We don’t know much about how well they penetrate into the brain and how to adjust doses as well as conventional levodopa with carbidopa.  They have similar side effects (‘on’ dyskenesia) to Sinemet because of the similarity of effective ingredient.  With fava beans, especially with a mediterranean lineage, because of fava-ism which is a hemolytic anemia that can be life threatening.

Marijuana benefits to PD?  What part?  Dosage?
Interestingly, the receptors for cannabis are the 2nd most populated receptors in our brain because we make our own cannabis so the potential for effect on all different parts of our brain is robust, particularly in areas involved in PD and motor symptoms.  The question is what other effects would you have on non-motor symptoms, balance, anxiety, etc.

Magnesium?
There as lot of research showing this deficiency is prevalent in America, especially among big coffee and alcohol drinkers.  There is a lot of interest in magnesium reducing leg cramping.  Magnesium and lithium act similarly in the brain.  Lithium is not an FDA nutrient, but humans do need a micro amount, which will also reduce leg cramping.

PD may be, in part, a metabolic disease just like Alzheimer’s is “Type III Diabetes” because the PD brain is not doing an effective job turning glucose into energy.  PD is similar when given a bunch of carbs, so eating more healthy fats and proteins makes PD brains more energy productive.

Healthy fats are: coconut oil and olive oil because they are richer in omega 3 fatty acids and phenols.  Nuts, avocado, fish/salmon.  Stay away from partially hydrogenated, inflammation-causing oils.

Why is Research into these Methods so Difficult?
* Lack of financial incentive for pharmaceutical companies (into coconut oil, for example).  $1.4million to bring a product to market, so pharmaceutical companies will not be researching anything that can’t be marketed.
* Competes for limited resources from government and non-profits.  Research into non-market-able products and treatments will have to be funded by non-profit dollars.
* Difficulty of randomized, controlled trials for CAM therapies
* High placebo effect
* Can have very individualized regimens and effects
> CAM trials also face many of the same challenges traditional studies do: subject selection, recruitment and retention, compliance with regimen.

Gary Vallat has been keeping track of his symptoms since the beginning.  His current chart is every half hour.  He’s into this because he doesn’t have an objective measure of changes over any length of time, so having the recorded data gives him accurate information about changes for the better or worse.

Anticipatory Grief and Ambiguous Loss in Dementia Care – webinar on March 29

Family Caregiver Alliance (caregiver.org) is hosting a webinar on March 29 at 11am on anticipatory grief and ambiguous loss in dementia care.  FCA defines these two terms as:

* “Anticipatory grief is the emotional pain and sadness that arises in advance of an expectant loss or death.”

* “Ambiguous loss is the confusing feeling of interacting with someone who is not fully present mentally or socially, as often happens to family caregivers who are closely involved with a person living with dementia.”

Register for the free webinar here:

attendee.gotowebinar.com/register/7926130116569883649

The organizers suggest attendees read “The Story of Rosie and Vince.”  (copied below)

See additional webinar details below.

Robin


Announcement from Family Caregiver Alliance

Wading in Emotional Quicksand
The Powerful Role of Anticipatory Grief and Ambiguous Loss in Dementia Care

Anticipatory grief is the emotional pain and sadness that arises in advance of an expectant loss or death. Ambiguous loss is the confusing feeling of interacting with someone who is not fully present mentally or socially, as often happens to family caregivers who are closely involved with a person living with dementia.

This webinar will provide information and practical coping strategies to enable caregivers to understand their own unique journeys of grief, and to learn ways to remain calm and hopeful in the process.

Objectives:
* Describe the role anticipatory grief and ambiguous loss play in caregiving process.
* Identify coping strategies to effectively deal with the multiple losses involved in caring for someone with dementia.
* Discuss the seven rules of survival for how to get out of “emotional quicksand” as a caregiver.

Speaker: Kay Adams
Kay Adams, LCSW, is an educator, writer, clinician, consultant, advocate, and trainer. Through her work, she educates, empowers, and supports people living with dementia, as well as the families, caregivers, and communities entrusted with their care. Kay currently works as a clinician in the diagnostic Memory Clinic and Geriatric Psychiatry Department for Kaiser Permanente Colorado in Denver. She is also a certified consultant and trainer for Teepa Snow’s Positive Approach™ to Care.  Kay has an extensive background in hospice, mental health, grief counseling, geriatric psychiatry, and dementia. She obtained her Master’s degree in Social Work at Augsburg College in Minneapolis.

When: Wednesday, March 29, 11 a.m. to 12 noon (PT)

Where: ONLINE

Cost: No charge

Contact: Calvin Hu, [email protected], (415) 434-3388 ext. 313

Additional materials: Please see “The Story of Rosie and Vince”

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The Story of Rosie and Vince

Rosie was a vibrant woman who came into the Memory clinic intake appointment dressed to the nine’s, right down to her designer glasses. She looked at least a decade younger than her 72 years would suggest. Rosie came accompanied by her husband of 45 years, Vince. You could tell by just taking one look at them that they were still madly in love after all this time together, and it was heart-warming to witness.

Rosie was referred to the memory clinic for diagnostic testing due to memory changes. Rosie was a highly educated woman who held advanced degrees, and had been at the top of her game in her chosen professional field before her retirement 4 years ago. Rosie’s memory changes had accelerated since retiring, and her short term memory had become severely impaired. Rosie was admittedly nervous about coming in for testing because dementia ran in her family, and Rosie was petrified that her own mental decline could be leading to that same eventual outcome.

In the intake appointment, Rosie stated that a lot of her current distress was related to fretting about her husband’s health. Vince had been recently diagnosed with a terminal illness and was “living on borrowed time.” Vince had his own stressors— not the least of which was worrying about Rosie’s progressive memory changes that were now impacting her ability to be independent in many areas of her life. Most heart-wrenching for Vince was the loss the of Rosie’s ability to be an equal partner in their marriage in the way she had always been due to memory, mood and functional changes along the way. So often now, Rosie was physically present, but seemed more and more “checked out” in a world of her own that Vince didn’t understand or know how to penetrate. Vince had a lot on his plate, but his love and dedication to Rosie’s well-being by far took precedence over his own mortality concerns that day.

When Rosie and Vince returned to the follow up appointment a few weeks later, the news that they dreaded most was delivered. Our team informed Rosie that testing results indicated that she had a probable Alzheimer’s disease which was already in the moderate stages. Even though Rosie and Vince both secretly suspected that diagnosis would come, hearing the words spoken out loud pierced the fragile bubble of denial they had cautiously been living in, and life as they knew it would never be the same again.

 

Teacher who lost the ability to walk, talk and care for himself gives one last incredible lecture

This sweet article was published last week on the website of ITV, a news station in the UK.  It’s about Paul Norman, a former teacher with multiple system atrophy (MSA), giving “one last incredible lecture” and his son making a film about his dad.  The lecture is at the end of this article. If you go to the webpage, you can view “One Last Lecture” plus some photos of Paul Norman and his family.

Robin

www.itv.com/news/london/2017-03-15/teacher-who-lost-the-ability-to-walk-talk-and-care-for-himself-gives-one-last-incredible-lecture/

Teacher who lost the ability to walk, talk and care for himself gives one last incredible lecture
ITV REPORT
15 March 2017 at 3:31pm

Multiple system atrophy results in parts of the brain and spinal cord gradually becoming more damaged over time. For more information click here.  (http://www.nhs.uk/conditions/multiple-system-atrophy/Pages/Introduction.aspx)

A teacher who lost the ability to walk, talk and care for himself gave one last incredible lecture. Paul Norman, 58, was diagnosed with Multiple System Atrophy in 2012 forcing him to retire from his job as an English teacher.

His son Will, 22, began filming his every day life, eventually taking him back to Billericay School, Essex, where he taught English for 15 years.

Paul delivered an inspiring final assembly to a packed hall of his former students, written on his iPad and played out on a speaker.

He told his audience of his devastating struggle with his condition, even making them laugh with jokes about his “Stephen Hawking” voice.

He passed away ten months later, in April last year, before film and English student Will had finished the documentary ‘One Last Lecture’, featuring the scene.

Much to Will’s regret, his father never got to see the completed film, which

has been watched thousands of times since it was published online last month.

During the emotional lecture, he tells the students:

“I’m doing this partly to educate you about disability. People have a habit of assuming that because the body doesn’t function properly the brain doesn’t either. But in reality the vast majority of disabled people function just the same mentally with all of the same feelings and emotional needs as everyone else.”

“It is frustrating of course being trapped inside a body that doesn’t work and frustrating for the people that care for me. The other day I was moving my hand to scratch my nose and my carer thought I was signalling for my glasses.”

“And recently my mum asked me what I would like to eat from the fridge. I asked for tiramisu and she thought I said tin of soup. It’s very confusing.”

– PAUL NORMAN

And leaving them with some important life lessons, he adds:

“Teaching is really all about learning, and I have not stopped learning due to my disability. In fact some of the things I have learnt I will share with you, because being disabled as I am enables me to gain insight into what really matters in life.”

“When I see the atrocities that people commit I wonder how far human beings can have yet to evolve. War is pointless. There are many good things about this world and most people are good.”

“They should look at the positive side of people rather than the faults. Health is more important than money and the world is still a beautiful place.”

“Love is important and making this film has certainly brought me closer to my son William. Life is a challenge and one should strive to be a better person.”

“Although I am not religious I do believe that you should always treat others as you wish to be treated yourself.”

– PAUL NORMAN

Will started making the film in July 2014 after he visited his father from Billericay, Essex, and found he was wheelchair bound.

He choked on a piece of rice, forcing Will to perform the Heimlich manoeuvre to save his life, and he went back to his university that night and “broke down”.

University of Sussex student Will explained:

“That’s when I decided to start filming, just to capture memories and record how he is now, to hold on to the past.”

– WILL NORMAN

The pair grew close and for the first time Will saw the reality of his dad’s every day struggles. They gathered an assembly of former students and staff, and wrote the speech together.

Final year student Will added:

“It gave him and myself something that we could work on together.”

“He always liked to help me with my homework, and now we had a project to work on together.”

– WILL NORMAN

He completed filming in the summer of 2015, before Paul passed away in April last year, and he completed the movie in mid-January this year.

“One of the most depressing elements of the whole process really is dad never got to see the full finished film. That’s my fault really.”

“He was always asking me when it was going to be ready, but I was always striving for perfection, trying not to let him down with it. There is a feeling of emptiness that lots of people have seen it but he never got to see it.”

“He never got to be the movie star that he wanted to be.”

– WILL NORMAN

Here is the full text of Paul Norman’s lecture.

“Hello everyone. It’s good to see you all.

When William first suggested this to me I was a bit apprehensive because of the changes in me and looking at me is scary.

If I see people slipping away I will understand, however if I see anybody on their phones they will be confiscated.

The last time most of you saw me I was a different person. I now have Multiple System Atrophy, or MSA for short.

It affects every part of me and I mean every part, except my brain.

The worst things are not being able to talk or walk anymore and having to rely completely on other people.

So seeing all of you is very emotional. I cried enough last Christmas when I saw the wonderful video which some of you were in.

I’m doing this partly to educate you about disability.

People have a habit of assuming that because the body doesn’t function properly the brain doesn’t either.

But in reality the vast majority of disabled people function just the same mentally with all of the same feelings and emotional needs as everyone else.

It is frustrating of course being trapped inside a body that doesn’t work and frustrating for the people that care for me.

The other day I was moving my hand to scratch my nose and my carer thought I was signalling for my glasses.

And recently my mum asked me what I would like to eat from the fridge. I asked for tiramisu and she thought I said tin of soup. It’s very confusing.

I have friends and family who visit me regularly and have stood by me.

I also have a wonderful team of carers who go beyond the call of duty to help me and I can’t praise them enough.

I certainly couldn’t do that job if I was able to. They get paid little by society and they do 12 hour shifts.

Imagine 12 hours with me. It’s enough to drive anyone balmy.

I’m not saying they are balmy by the way.

Honestly, I feel like Stephen Hawking – except I have a better voice.

As you can see my sense of humour has not gone, in fact it helps me see the funny side even the moments when it is most difficult.

In fact inappropriate laughter is one feature of MSA, so I’ll laugh when it is most serious. That’s my excuse anyway.

For example I was in a church not long ago and I suddenly started laughing for no reason.

This would have been even more embarrassing had the congregation not known.

It was my uncle Bob’s funeral.

Teaching is really all about learning, and I have not stopped learning due to my disability.

In fact some of the things I have learnt I will share with you, because being disabled as I am enables me to gain insight into what really matters in life.

When I see the atrocities that people commit I wonder how far human beings can have yet to evolve.

War is pointless.

There are many good things about this world and most people are good.

They should look at the positive side of people rather than the faults.

Health is more important than money and the world is still a beautiful place.

Love is important and making this film has certainly brought me closer to my son William.

Life is a challenge and one should strive to be a better person.

Although I am not religious I do believe that you should always treat others as you wish to be treated yourself.

Now enough of this before I turn into John Lennon.

 

Although I can’t talk any more, I can answer you as long as the answer is yes or no.

If for example you ask if it’s nice to see you I can go like that [thumbs up].

Conversely, if you ask me if sitting in a chair all day is much fun, I will go like this [thumbs down].

So if I chat to you later I’m afraid we”ll have to play by those rules, and whatever you do, please don’t ask me two questions at once.

Finally, thank you all for coming. It means a lot to me. I’m sorry it’s a bit short, but at least it’s sweet.”

– PAUL NORMAN

Webinar for healthcare professionals on 3 dementias, including DLB – April 6th

This 90-minute webinar on April 6th is designed for healthcare professionals.  (Geriatricians and social workers can receive education credits.)  Titled “Beyond Alzheimer’s Disease,” the webinar will address the three most common dementias after Alzheimer’s — vascular dementia, dementia with Lewy bodies (DLB), and frontotemporal dementia.

Here’s information from the webinar’s host, Resources for Integrated Care, about the event.

Robin



resourcesforintegratedcare.com/GeriatricCompetentCare/2017_GCC_Webinar_Series/Beyond_Alzheimers

Beyond Alzheimer’s Disease – Other Causes Of Progressive Dementia In The Older Adult
Date/Time:  Thursday, April 6, 201712:00-1:30 pm ET

Registration Link:
secure.confertel.net/tsRegisterD.asp?course=7408411

Description:
Several atypical dementia syndromes may be confused with the more common diagnosis of Alzheimer’s disease (AD). It is important for providers to distinguish among these diagnoses because the management strategies that are effective in the care of adults with AD are often not effective with individuals with these atypical dementias. Three of the most common of these syndromes are:

* Vascular dementia – cognitive deficits most often associated with vascular damage in the brain, either micro or macro in nature.

* Dementia with Lewy Bodies – a dementia that also includes one or more of these core findings: recurrent and detailed visual hallucinations, parkinsonian signs, and fluctuating changes in alertness or attention.

* Frontotemporal dementia – a disease often seen in individuals with onset of cognitive symptoms at a younger age; these individuals present most often with executive and language dysfunction and significant behavioral changes.

This webinar is intended for a wide range of stakeholders – physicians, nurses, social workers, care managers, family caregivers, staff at social service agencies, managed long-term services and supports (MLTSS) and other health plans, consumer organizations, and those who care for people with dementia (MLTSS).

This webinar will:

1) Identify key distinguishing diagnostic features of the more common atypical dementias

2) Demonstrate basic knowledge of key strategies for preventing or reducing difficult behaviors associated with Frontotemporal dementia or Lewy Body Dementia

3) Discuss the impact of these atypical dementias on adults and their families and how to address the resultant care challenges

Webinar Presenters:
* Melinda S. Lantz, MD, Chief of Geriatric Psychiatry, Mount Sinai Beth Israel Medical Center, New York, NY
* Geri Hall, PhD, ARNP, CNS, FAAN, Banner Health, Phoenix, AZ
* Rebekkah Wilson, MSW, Dementia Care Consultant and Trainer
* Sharon Hall, Family Caregiver

Instructions:
After registering, you will receive an email from [email protected] containing event log on information. The email also contains an attachment that, when opened, will save the event log on information to an Outlook calendar.

The log on information is unique to you. Each registration allows for only one connection, so do not share this information with anyone else.

Blog by Debra Ford, whose husband Dave has PSP

In skimming a Facebook page on PSP, I came across Debra Ford’s blog.  See:

www.debrafordblog.com/

Her blog is titled “The Reality of the Battle.”  The tag line is:

“When warriors go down on their kneeds, the battle is not over.  It has just begun.”

Debra’s husband Dave was diagnosed in 2006 with Alzheimer’s, and in 2009 the diagnosis changed to progressive supranuclear palsy (PSP).  In late August 2016, Debra started a blog.  She posts a few times each month.   We aren’t told where they live but they are definitely in the US as she mentions the VA and YMCA in one post.

Here’s a recent post (February 4, 2017) I liked a lot:

“dAVE By the NUM3BERS
4 neurologists
3 family doctors
4 physical therapists
1 personal trainer
2 speech therapists
3 wheelchairs
1 scooter
2 gyms
2 walkers
1 wheelchair carriers
2 sliding boards
1 toilet lift
1 portable toilet
2 personal lifts
1 traposize
3 gaitbelts
10 years
unlimited family love and support”

Her first post is copied below.

Robin

——————————–

Posted by: Debra Ford
Monday, August 29, 2016

The battle started ten years ago when Dave was misdiagnosed with Alzheimer disease. It would be three years before we received the correct diagnosis of PSP (Progressive Supernuclear Palsey). The disease attacks the part of the brain that controls movement. It has many of the Parkinson Disease symptoms. For disease details go to http://www.ninds.nih.gov/disorders/psp/detail_psp.htm.  For those who know and love Dave, it is heartbreaking to watch. For Dave progressive means him losing his ability to walk, swallow, see, speak, slowly and plateauing over the past ten years.  The plateaus give us a small period of relief and brief hope that he may not get worse. The hope is false hope, the only true hope is in grace of God, that he will provide the strength and knowledge we need until Dave goes home with the Lord. This battle has taught me how to cope with what is happening to Dave, how to be a prayer warrior, and I pray make me a better person. Thank you for following our story. I pray by sharing our story, his west coast family and those here who love him will understand how brave Dave is in his fight to stay mobile and participate in our everyday life.

Johns Hopkins Overview of Progressive Supranuclear Palsy

Johns Hopkins University has an online health library with info about various conditions.  I read about their page on progressive supranuclear palsy (PSP) from a Facebook (FB) page.  Here’s a link to the Johns Hopkins overview of PSP:

www.hopkinsmedicine.org/healthlibrary/conditions/nervous_system_disorders/progressive_supranuclear_palsy_134,65/

There were mostly negative comments on the FB page; many readers felt that the negative aspects of PSP were under-emphasized.

My opinion:  This seems like a reasonable overview of PSP, especially for a family in the early stages.

Robin

———————

What is progressive supranuclear palsy?
Johns Hopkins University
Un-dated

Progressive supranuclear palsy (PSP) is a complex condition that affects the brain.

* Progressive means that the condition’s symptoms will keep worsening over time.
* Supranuclear refers to the region of the brain affected by the disorder — the section above 2 small areas called nuclei.
* Palsy is a disorder that results in weakness of certain muscles.

PSP affects your ability to walk normally by impairing your balance. It also affects the muscles controlling your eyes, making it difficult to focus and see things clearly.

Progressive supranuclear palsy is rare. It may be easily mistaken for Parkinson disease, which is much more common and has similar symptoms. But with PSP, speech and difficulty swallowing are usually affected more significantly than with Parkinson disease. Problems moving the eyes, especially problems looking downward, are also more common in PSP. And unlike people with Parkinson disease, people with PSP are more likely to lean backward (and fall backward) rather than forward.

PSP is more common in men than women. Most of the time, it affects people in late middle age or older.

Although PSP isn’t fatal, symptoms do continue to worsen and it can’t be cured. Complications that result from worsening symptoms, such as pneumonia (from breathing in food particles while choking during eating), can be life threatening.

What causes progressive supranuclear palsy?

Although experts basically understand how PSP happens, they don’t understand why it happens. PSP occurs when brain cells in an area of the brain stem become damaged, but how and why these cells are damaged isn’t clear.

What are the symptoms of progressive supranuclear palsy?

Symptoms of PSP tend to start out subtly. Then over time they become more noticeable and severe. Often, the first sign is a problem with balance while walking. You may fall a lot or find that you feel a bit rigid or uncomfortable when you walk.

These are also early signs of PSP:

* Becoming more forgetful and cranky
*Having unusual emotional outbursts, like crying or laughing at unexpected times
* Becoming angry for no real reason
* Tremors in the hands
* Trouble controlling eye movements
* Blurred vision
* Slurred speech
* Trouble swallowing
* Dementia
* Depression
* Trouble directing your eyes where you want them to go
* Inability to control the eyelids, such as unwanted blinking or being unable to open your eyes
* Trouble holding someone’s gaze

How is progressive supranuclear palsy diagnosed?

A careful evaluation of symptoms can diagnose PSP. But it is often hard to diagnose in its early stages as it may mimic Parkinson disease or an inner ear infection. This is because balance is so affected by PSP. Diagnosis usually includes ruling out other conditions.

Balance problems and changes in gait are the clearest symptoms that can identify PSP, particularly when combined with an inability to control or move the eyes.

How is progressive supranuclear palsy treated?

While there is no medicine or procedure available to cure PSP or completely control its symptoms, there are strategies and methods that can help manage many of the symptoms.

To improve balance and improve flexibility of the muscles, medicines used to treat Parkinson disease may be effective. These include the medicine levodopa, which may be used along with other medicines. Some of the older types of antidepressants, such as amitriptyline, fluoxetine, and imipramine, can also help relieve symptoms.

If you have PSP, you may be able to use certain aids to make life easier. For example:

* Special glasses with prisms may improve your vision.
* A weighted tool that helps you walk more easily can prevent you from falling backward.
* Physical therapy and exercise may slightly improve flexibility in some people.

When symptoms are advanced and swallowing becomes too hard, you may need a feeding tube. This tube goes from an opening made in the skin of your abdomen into the stomach and provides you with needed nutrition.

What are the complications of progressive supranuclear palsy?

PSP can cause serious complications when symptoms affect your ability to swallow. You could easily choke on food or breathe food into your lungs. And being more likely to fall increases the risk of suffering a serious injury to the head or breaking a bone.

Living with supranuclear palsy

Although there is no known cure, medicines and devices can help you live with the symptoms. Work with your healthcare provider to find ways to make walking safer and improve your vision. PSP is not fatal but it is important that you do not breathe in food particles (aspirate) while you are eating because it could be life threatening.

When should I call my healthcare provider?

Although it’s easy to try to brush off initial symptoms as being a little clumsy or maybe having an ear infection, it’s a good idea to see a doctor at the earliest sign of symptoms, especially if you have problems with your eyes or vision.

Always seek advice from your healthcare provider if you or your caregiver notice sudden or significant changes in your symptoms.

Key points about supranuclear palsy

* Experts are still working to understand more about progressive supranuclear palsy and find more effective ways to treat it.
* Although the disease itself isn’t life threatening, its complications can be.
* Be aware of suspicious symptoms and talk with your healthcare provider if you notice any problems with your eyes, vision, or balance.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

* Know the reason for your visit and what you want to happen.
* Before your visit, write down questions you want answered.
* Bring someone with you to help you ask questions and remember what your provider tells you.
* At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.
* Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.
* Ask if your condition can be treated in other ways.
* Know why a test or procedure is recommended and what the results could mean.
* Know what to expect if you do not take the medicine or have the test or procedure.
* If you have a follow-up appointment, write down the date, time, and purpose for that visit.
* Know how you can contact your provider if you have questions.

Johns Hopkins Overview of Dementia with Lewy Bodies

Johns Hopkins University has an online health library with info about various conditions.  I read about their page on dementia with Lewy bodies (DLB) from a Facebook (FB) page.  Here’s a link to the Johns Hopkins overview of DLB:

www.hopkinsmedicine.org/healthlibrary/conditions/nervous_system_disorders/progressive_supranuclear_palsy_134,65/

The JH webpage is copied below.

Robin


Dementia with Lewy Bodies
Johns Hopkins University
Un-dated

Lewy Body Dementia: What You Need to Know

* Lewy body dementia is a form of progressive dementia that affects a person’s ability to think, reason, and process information.

* Diagnosing Lewy body dementia can be challenging; an estimated 1.4 million Americans are living with the disease.

* The condition has three features that distinguish it from other forms of dementia:

– Fluctuating effects on mental functioning, particularly alertness and attention, which may resemble delirium

– Recurrent visual hallucinations

– Parkinson-like movement symptoms, such as rigidity and lack of spontaneous movement.

* Interventions used in other forms of dementia may help people living with Lewy body dementia. It’s important to work with a specialist familiar with the many aspects of the disease.

What is Lewy body dementia?

Lewy body dementia is a form of progressive dementia caused by degeneration of the tissues in the brain.

More than a million people in the U.S. are affected by Lewy body dementia, according to the Lewy Body Dementia Association.

People with Lewy body dementia have a buildup of abnormal protein particles called Lewy bodies in their brain tissue. Lewy bodies are also found in the brain tissue of people with Parkinson disease (PD) and Alzheimer disease (AD). However, in these conditions, the Lewy bodies are generally found in different parts of the brain.

The presence of Lewy bodies in Lewy body dementia, PD, and AD suggests a connection among these conditions. But scientists haven’t yet figured out what the connection is.

Lewy body dementia affects a person’s ability to think, reason, and process information. It can also affect personality and memory. Lewy body dementia becomes more prevalent with age, and typically first presents when a person is in his or her 60s and 70s.  Lewy body dementia is progressive, which means it continues to develop over time. There are several types of dementia with different causes.

What causes Lewy body dementia?

Lewy body dementia is caused by degeneration or deterioration of brain tissue. Lewy body dementia may be genetic, but it is not always clear why someone develops Lewy body dementia. Lewy bodies in the brain affect substances called neurotransmitters. A neurotransmitter is a chemical that helps to transmit signals from one nerve cell to another.

One type of neurotransmitter is dopamine, which helps transmit signals that cause muscle movement. Lewy bodies interfere with the production of dopamine. A lack of dopamine causes movement problems, such as those seen in  Parkinson disease.

Acetylcholine is another type of neurotransmitter found in the parts of the brain responsible for memory, thinking, and processing information. When Lewy bodies build up in these areas, they use up the acetylcholine, causing symptoms of dementia.

What are the symptoms of Lewy body dementia?

According to the National Institute of Neurological Disorders and Stroke, Lewy body dementia has 3 features that distinguish it from other forms of dementia:

* Fluctuating effects on mental functioning, particularly alertness and attention, which may resemble delirium

* Recurrent visual hallucinations

* Parkinson-like movement symptoms, such as rigidity and lack of spontaneous movement

In Lewy body dementia, memory problems often occur later in the progression of the disease.

Lewy body dementia can be confused with other forms of dementia, but it also has unique features, such as hallucinations and delirium.

The primary sign of Lewy body dementia is a progressive decline in cognitive functions, such as memory, thinking, and problem-solving. The decline in cognitive function is enough to affect the ability to work and perform normal daily activities. Although memory may be affected, it isn’t usually as impaired as in someone with Alzheimer disease.

Lewy body dementia is generally diagnosed when at least 2 of the following features are also present with dementia:

* Fluctuations in attention and alertness. These fluctuations may last for hours or days. Signs of these fluctuations include staring into space, lethargy, drowsiness, and disorganized speech. These fluctuations have been referred to as “pseudo delirium” because they are a lot like delirium.

* Visual hallucinations. These hallucinations recur and are very detailed. While the hallucinations may be upsetting to someone observing them, they generally don’t bother the person having them. Many people with Lewy body dementia have detailed visual hallucinations.

* Movement symptoms consistent with Parkinson disease (PD). Such movement symptoms include slow movement, shuffling gait, rigidity, and falls. Tremors may also be present, but not as pronounced as in a person with PD with dementia.

Additional signs and symptoms seen in Lewy body dementia include:

* Depression

* Sleep disorder that affects REM sleep, causing vivid dreams with body movement

* Dizziness, feeling lightheaded, fainting, or falling

* Urinary incontinence

The symptoms of Lewy body dementia may resemble other conditions. Always see a health care provider for a diagnosis.

How is Lewy body dementia diagnosed?

Diagram of a man receiving a CT scan
The only definite way to diagnose Lewy body dementia is by doing an autopsy – there are tests that show the presence of Lewy bodies. So, Lewy body dementia is diagnosed based on medical history, a physical exam, and symptoms.

In addition to a complete medical history and physical exam, the health care provider may order some of the following:

* Blood tests. These are to rule out conditions such as vitamin B12 deficiency and hypothyroidism (a lack of thyroid hormones).

* Computed tomography (CT) scan. This imaging test uses X-rays to create pictures of cross-sections of the brain.

* Electroencephalogram (EEG). An EEG measures the electrical activity of the brain.

* Magnetic resonance imaging (MRI). This imaging test uses a large magnet and radio waves to look at organs and structures inside your body. MRIs are very useful for examining the brain.

* Positron emission tomography (PET). PET may detect biochemical changes in an organ or tissue that can show the onset of a disease process before physical changes related to the disease can be seen with other imaging tests.

* Neuropsychological assessments. These tests assess mental functioning and include attention span, memory, language and math skills, and problem-solving skills.

* Psychiatric evaluation. This may be done to rule out a psychiatric condition that may resemble dementia.

How is Lewy body dementia treated?

Dementia with Lewy bodies has no cure. Treatment for Lewy body dementia involves addressing the symptoms.

Medications used to treat Alzheimer disease (AD) and Parkinson disease (PD) are often used to treat Lewy body dementia. Other treatments, such as supportive care, physical therapy, psychotherapy, and behavioral interventions, may be used, too.

It’s important that the health care provider treating Lewy body dementia is familiar with all aspects of the disease, because other specialists are often involved. Because Lewy body dementia shares features with AD and PD, those features will need to be treated. Many people with Lewy body dementia, however, can’t tolerate some of the medications for AD or PD. Caution must be used when prescribing certain medications for Lewy body dementia.

Living with Lewy body dementia

Interventions used in other forms of dementia may also help people living with Lewy body dementia. These include using glasses or hearing aids as needed, educating the patient and family, providing a structured environment, and teaching behavioral interventions. The interventions depend on the specific needs of each patient and his or her caregivers. Needed interventions will change over time as the disease progresses.

Hallucinations may be managed by simply ignoring them and educating the caregiver(s) about them. Improving lighting and keeping the patient around other people also helps.

It’s important to work with a health care provider familiar with Lewy body dementia and the many aspects of the disease. Other specialists are often involved, too.

When should I call my health care provider?

If you are diagnosed with FTD, you and your caregivers should talk with your health care providers about when to call them. Your health care providers will likely advise calling if your symptoms become worse, or if you have obvious and/or sudden changes in

Next steps

Tips to help you get the most from a visit to your health care provider:

* Before your visit, write down questions you want answered.

* Bring someone with you to help you ask questions and remember what your provider tells you.

* At the visit, write down the names of new medicines, treatments, or tests, and any new instructions your provider gives you.

* If you have a follow-up appointment, write down the date, time, and purpose for that visit.

* Know how you can contact your provider if you have questions.

5 common dementias, including Lewy Body Dementia

A post today on a Canadian newspaper website, Castanet (castanet.net), is about five common dementias.  The five include:  Alzheimer’s, vascular dementia, Lewy body dementia, frontotemporal dementia, and Wernicke-Korsakoff’s syndrome (caused by prolonged alcohol consumption).  Here’s a link to the post:

www.castanet.net/news/Dementia-Aware/191198/5-common-dementias

Here’s how Lewy body dementia (LBD) is described:

Lewy body dementia:
Often mistaken for other dementias, e.g. Parkinson’s dementia
* Presence of Lewy bodies: tiny spherical protein deposits that develop inside nerve cells in the areas of thinking, memory and movement
* Fluctuating cognitive impairment: periods of increased confusion & windows of lucidity
* Hallucinations or delusions occur frequently and can be quite detailed
* Spatial disorientation e.g. falls, fainting
* Tremor, rigidity and slowness of movement
* Highly sensitive to neuroleptic drugs: Risperidone

This is OK except for two problems.  First, the author says that LBD is mistaken for other dementias such as Parkinson’s dementia.  Well, by definition Parkinson’s (Disease) Dementia is ONE of the disorders on the Lewy Body Dementia spectrum.

Second, I’m not sure how “fainting” is an example of “spatial disorientation.”  Fainting is an example of autonomic dysfunction.

Definitely not by favorite short LBD overview….

Robin