“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