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I have Parkinson's diseases and thought it would be nice to have a place where the contents of updated news is found in one place. That is why I began this blog.

I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible.

I am not responsible for it's contents. I am just a copier of information searched on the computer. Please understand the copies are just that, copies and at times, I am unable to enlarge the wording or keep it uniformed as I wish.

This is for you to read and to always keep an open mind.

Please discuss this with your doctor, should you have any questions, or concerns.

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Friday, August 17, 2018

The Right Medication On Time Every Time

By Michael Church ·      August 10, 2018



One frequently asked question is about managing medication to maximize its efficacy and it goes like this: “Why doesn’t my medication seem to work?” True to its form, Parkinson’s disease (PD) is no stranger to medication mistakes than other illnesses but I’ll keep my comments mainly within the context of PD. Parkinson’s disease is a complex disease that has been referred to before as having multiple symptoms that may seem unrelated but can be tied to PD. These can include respiratory, cardiac, and digestive problems, in addition to related conditions of the nervous system. 
All requiring different medications to treat them. Sometimes patients are taking a cocktail of multiple medications, in many instances prescribed by a variety of doctors. A gastroenterologist is no substitute for a neurologist. The same can be said about the spectrum of medical specialties. No disrespect to the medical profession but long hours and excessive workloads do not excuse the professional courtesy of a consultation or at least a medication review to assure there aren’t any interactions or contraindications that could actually do harm to the patient. In most medical practices this is protocol.

Common medication mistakes

  • Allergies – Again protocol should include what types of medications you are allergic to and list alternatives.
  • Follow up – The lack of follow up with your doctor leaves the door open for unanswered questions.
  • Questions – You should have a real dialogue with your doctor about what you are taking, what you are taking it for and how it interacts with other medications you are taking.
  • Problems – There should be clear instructions on what to do if a prescribed medication isn’t working or adverse effects occur.
  • Assumptions – Don’t assume that your doctor knows everything about PD. They may specialize in say pulmonology but have only a basic understanding of PD.
  • Nutrition – What you eat and when you eat may affect just how effective your medication will be. For example, too much protein can minimize the absorption of carbidopa/levodopa.
  • Timing – Remembering to take your medications on time, every time! This will help manage your on time and off time.
Essentially, your doctor is tasked with the burden on how to maximize your medication with the least amount of side effects and zero contraindications and communicating that to you. Far too often I run across people living with PD that do not know this and have difficulty managing medications. The proper management of medication is of course following dosage instructions but as I’ve already stated, PD is a very complex disease that requires a variety of medications that may or may not work for you. This makes communication with your doctor extremely important. If it helps you, keep a list of medications that you take that should include the name of the medication, what you take it for and how often you take it. Also include any supplementsthat you may be taking. This will help your doctor make an informed decision about what medications to prescribe.
I would be remiss if I did not mention that exercise is a good form of medicine. In my opinion, a structured exercise program may actually stave off the need for prescription medication. Your local PD support organization can recommend a program that’s right for you. This doesn’t mean you don’t need prescription medication but a healthy program of good nutrition and regular exercise can limit the amount that you require.

The takeaway

Here’s the takeaway: Proper medication management is being honest with your doctor and communicating problems or changes, good and bad about what you are taking and following the recommended dosage as well as educating yourself on alternative therapies available to you. Remember to take your medications on a schedule (on time, every time). Set an alarm if necessary because part of the failure of good medication management is forgetting to take your medications on a timely basis.
https://parkinsonsdisease.net/living/right-medication-time/

Laryngeal Disorders

Laryngospasm

https://youtu.be/nPtdkqOLLP4







Hypokinetic Neural Laryngeal Disorders

Hypokinetic neural laryngeal disorders have been most commonly related to the degenerative neurological disorder idiopathic Parkinson disease. The etiology of this disease of the extrapyramidal system is unknown; however, it has been associated with both genetic and environmental factors. In Parkinson disease, degenerative changes in the substantia nigra result in depletion of the neurotransmitter dopamine. Parkinsonism is a term for other disorders that have some of the characteristics of idiopathic Parkinson disease, but are the result of a virus, head trauma, carbon monoxide poisoning, toxic build-up, or historic influenza epidemic. It has been reported that 1.5 million Americans have idiopathic Parkinson disease with 89% of these patients having a voice disorder. 

The physical pathologies of rigidity, tremor, reduced range of movement, and slowness of movement are observed together with the classic symptoms of mask-like face and micrographia. Hypokinetic dysarthric vocal symptoms vary greatly, depending on the medication given for the other symptoms that are present and how much the disease has progressed. Most patients with Parkinson’s disease exhibit hoarse-harsh vocal quality, with limited pitch and volume range, because of laryngeal musculature involvement. Other voice characteristics include breathiness, roughness, hoarseness, and tremulousness. Although the appearance of the vocal folds may be normal, recruitment of the vocal folds is not uncommon during laryngoscopy. The findings of bowing and greater amplitude of vibration and laryngeal asymmetry have also been described in Parkinson patients. 

The most striking videostroboscopic findings in these patients were abnormal phase closure and phase symmetry. Amplitude and mucosal wave were essentially within normal limits in these patients.

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Stridor in Parkinson's disease: a case of 'dry drowning'?

Author information

Abstract


OBJECTIVES: 

(1) To present a rare case of stridor secondary to prolonged laryngospasm in a patient with Parkinson's disease, and (2) to review the literature on stridor in Parkinson's disease.

METHODS: 

We report a 73-year-old Parkinson's disease patient who developed acute stridor due to prolonged laryngospasm triggered by overspill of excessive secretions. The literature was reviewed, following a Medline search using the keywords 'Parkinson's disease' and 'stridor' or 'airway obstruction' or 'laryngospasm' or 'laryngeal dystonia' or 'bilateral vocal cord palsy'.

RESULT: 

Only 12 previously reported cases of stridor in Parkinson's disease patients were identified. Causes included bilateral vocal fold palsy (eight cases), laryngospasm (five), and dystonia of the jaw and neck muscles (two). The mechanism of laryngospasm in our patient was similar to 'dry drowning', and has not previously been described.

CONCLUSION: 

Laryngospasm can be triggered in Parkinson's disease by excessive secretions entering the larynx. The mechanism is similar to 'dry drowning'. Treatment focuses on reducing secretions. The use of botulinum toxin to reduce spasm is inappropriate in this situation. This case emphasises the importance of recognising different causes of stridor in Parkinson's disease patients, as this affects management.
PMID:
 20003593

DOI:
 10.1017/S0022215109992222
  



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Spasmodic Dysphonia

What is Spasmodic Dysphonia?


Spasmodic Dysphonia (SD) is a disorder of speech which results in inappropriate laryngeal (voice box) muscle contractions. It may present as a strained and strangled voice, a breathy and whispering voice or rarely as noisy breathing. It was originally described in 1871 and for nearly a century was thought to be a psychosomatic illness. However, today we know that it is a neurological abnormality (illness of the nervous system) although the exact cause is still to be identified. 
Spasmodic Dysphonia (SD) may affect the muscles that close the larynx (voice box) causing a strained and strangled voice. This is called adductor SD. Or it may affect the muscles that open the larynx called abductor SD. This gives a breathy, whispering quality to the voice. A few patients may have a mixture of both. Most cases involve only the larynx (70%) but occasionally the voice problem will be associated with movement disorders (dystonia) of another part of the body. Women are afflicted slightly more often than men (63%) and there is some evidence that the condition may be inherited. In one study 12% of patients had another family member with similar symptoms. A small percent of patients may have dystonias which eventually spread to other parts of the body. 

How is it Diagnosed?
Your physician or PA will take a detailed history of your difficulties and past medical history. They will want to know when you first noticed the problem, if it came on suddenly after an illness or stressful event and when it bothers you the most. You will be asked if there is any activity or time when the symptoms are worse (ie, talking on the telephone) or better (ie. while singing, laughing or after an alcoholic drink). You will also be asked if there are certain words that are more difficult to say than others. People with adductor type SD will have difficulty with voiced vowel sounds as in the sentence, “We mow the lawn all year.” or when counting from 80 to 90. Those with abductor SD will have problems with voiceless consonant sounds (f, p, s) and will have difficulty with sentences like, “Harry had a hard hat.”, or The puppy bit the tape.”
Breathing dystonia is a rare form of adductor SD and occurs only on inspiration (when the patient is breathing in). The patient will have a normal voice, cough and swallow but will make noise when breathing. This rarely causes the patient discomfort and disappears when they are sleeping. 
After taking a detailed history and examining you, the physician or PA will perform a fiberoptic endoscopic examination of your larynx. First the tissues of the nose and throat will be numbed with local anesthetic. Then a tiny camera on a flexible tube (endoscope) will be placed into the nose and down the back of the mouth. While the examiner is looking through the endoscope you will be asked to say some sentences and make certain sounds. The camera will record the motion of the larynx during these exercises. With adductor SD there will be an over closure or squeezing of the vocal cords which can be seen through the endoscope. In patients with abductor SD, the vocal cords are not able to close completely after the voicing of certain sounds. 
Because this is a neurologic condition which may present as a symptom of other illnesses such as MS, Parkinson's Disease or Meige Disease, it is strongly recommended that the patient be evaluated by a neurologist as well as an ENT doctor. This additional evaluation will identify any other affected body parts and rule out causative disorders prior to treatment. 

What are the Treatment Options?

Botulinum Toxin:

Botulinum toxin (Botox) injection guided by electromyography (EMG) is the gold standard of treatment for uncomplicated SD. The physician will target the appropriate muscle in the larynx using the guidance of an electrode needle and EMG machine. This machine picks up the electrical signal that is produced by the muscle spasm. A dose of Botox is injected into the muscle after it is identified by EMG. This toxin will cause a partial, temporary weakness of the muscles of the larynx. Depending on the outcome of the endoscopic exam the physician may choose to inject both or just one side of the larynx. Most patients get 1 to 3 months of significant improvement without suffering uncomfortable side effects. 
Since no two patients are identical, the starting dose is uncertain and may not provide the desired result. If this is the case the patient will be asked to return in two weeks for reevaluation. A booster injection can be given if desired. If the resultant effect creates unwanted side effects such as choking on liquids, breathiness of voice, or total loss of voice, the patient will be asked to wait until the effect wears off and return for evaluation. Subsequent injections will be given at a reduced dose. It may take several injections to determine the optimal dose for you. It is important to understand that the effect of Botox is temporary and side effects can be dealt with by using a few simple techniques like sipping through a straw, chin tuck when swallowing and coughing after each swallow. 

Oral Medications and Voice Therapy:

Medications have been used as primary treatment. However, they have not been shown to have significant effect on true SD. They can be used to boost and prolong the effect of Botox injections. Likewise, voice therapy alone has been shown to be of little benefit when treating SD. However, the skill of a therapist trained in voice disorders is essential in the diagnosis of SD and can prolong the result of injections with prevention of poor vocal hygiene and breath support strategies. 

Surgery:

Several surgical procedures which either weaken the muscles of the larynx or alter the function of the main nerve controlling the larynx have been proposed. Although many give excellent results initially, over time spasms have returned and the benefit decreases. A promising procedure is called Selective Laryngeal Denervation-Reinnervation (SLD/R) and involves cutting the recurrent laryngeal nerve and reattaching it to a cervical nerve branch in the neck. All patients can expect to experience 3 to 6 months of breathiness and approximately 10% of patients have swallowing difficulty. 
Deep Brain Stimulators (DBS) has been used for generalized dystonia but has not had predictable effects on laryngeal dystonia.

Patient Support
For many decades this disorder of the voice was considered to be psychogenic and a result of anxiety or depression. Today we understand that the depression felt by many patients is secondary to the disability created by SD. As with any form of depression, regardless of its cause, it is important to seek the counsel of your primary care physician. Treatment for depression and avoidance of stressful life styles can augment treatment of SD. Support from family, friends and employers is helpful. 
Many patients also benefit from communicating with others coping with SD. For more information on support groups, we recommend contacting the National Spasmodic Dysphonia Association at One East Wacker Drive, Suite 2430, Chicago, IL 60601-1905, Phone: 1-800-795-6732, Email: NSDA@dysphonia.org, Website: www.dysphonia.org. 

 


Tiny Brain Bleeds Associated with Parkinson's Disease Dementia, Study Finds

BY JOSE MARQUES LOPES, PHD        August 17, 2018




Tiny bleeds in the brain are associated with cognitive impairment in Parkinson’s disease and risk of Parkinson’s disease dementia (PDD), a Japanese study has found.
Cerebral microbleeds (CBMs) are small, chronic brain hemorrhages likely caused by structural abnormalities of the small vessels in the brain. CBMs are markers of small vessel disease frequently found in normal aging, as well as in patients with stroke and Alzheimer’s disease. These lesions are known promoters of cognitive decline in the elderly and are linked to poor prognosis in Alzheimer’s patients.
Cognitive impairment is one of Parkinson’s non-motor symptoms and, along with dementia, affects Parkinson’s prognosis. Other non-motor symptoms – including visual hallucinations, sleep problems, behavior disorders, and orthostatic hypotension (a decrease in blood pressure when standing up), as well as older age at onset — are considered risk factors for Parkinson’s cognitive decline.
The authors previously had shown that CBMs are common in Parkinson’s patients. Also, experimental studies reported that brief brain blood flow reduction promotes the aggregation of alpha-synuclein protein, a key player in Parkinson’s disease.
However, whether the presence of these lesions is a risk factor for cognitive impairment in patients with Parkinson’s was not clear.
Juntendo University researchers retrospectively analyzed a total of 124 clinically diagnosed Parkinson’s patients to determine the association between the presence of CBMs and cognitive decline. Both early-stage and advanced disease cases were included.
Twenty-one patients (16.9%) were diagnosed with PDD. Factors including gender, age, Hoehn and Yahr (H-Y) stage (a system used to assess the worsening of Parkinson’s symptoms) history of stroke, orthostatic hypotension (defined as a 20-mm Hg drop in systolic and/or a 10 mm Hg drop in diastolic blood pressure), systolic hypertension (systolic blood pressure equal to or higher than 140 mm Hg), specific cerebrovascular lesions, and the use of oral blood thinners. All significantly correlated with PDD.
Matching prior findings, abnormal nocturnal blood pressure — increasing or falling 10 to 20% — also was associated with PDD.
CBMs — defined by brain MRI as having a diameter of 2-10 mm — were observed more frequently in PDD patients than in those without dementia. This finding was maintained across different microbleeds’ types called deep or infratentorial (below the brain lobes) and strictly lobar (restricted to the brain lobes).
Also, both types of CBMs were associated with lower cognitive scores, as measured with the Mini-Mental State Examination (MMSE) and the Hasegawa dementia scale-revised. Patients with a strictly lobar type of microbleed scored lower on both scales than individuals with deep or infratentorial ones.
Patients with CBMs were older and had a higher (worse) H-Y stage than those without these lesions. They also showed more severe cerebrovascular lesions and higher prevalence of hypertension, diabetes mellitus, history of ischemic stroke, coronary artery disease, orthostatic hypotension, systolic hypertension, and use of oral blood thinners and anti-hypertensive medications.
Importantly, male gender, cerebrovascular lesions on MRI, and strictly lobar CMBs (but not deep and infratentorial) were risk factors for PDD.
“In conclusion, CMBs, especially strictly lobar type, are associated with cognitive decline and dementia in [Parkinson’s],” researchers wrote.
Amyloid plaques — typical in Alzheimer’s patients’ brains — are known contributors for cognitive decline in Parkinson’s and are more common in PDD patients than in those with Parkinson’s but not dementia. In fact, up to 50% of patients with PDD also may have an Alzheimer’s pathology.
“[O]ur data suggest that [Parkinson’s] cases with strictly lobar distribution of CMBs may have an underlying [Alzheimer’s] pathology and contribute to cognitive decline,” the scientists added.
However, the research team noted that future studies with larger patient groups are necessary to confirm these results.
https://parkinsonsnewstoday.com/2018/08/17/tiny-brain-bleeds-associated-with-parkinsons-disease-dementia-study-reports/

‘My death is not my own’: the limits of legal euthanasia

Henk Blanken     17 Aug 2018 



I’m half the man I used to be. One half of my body twitches. I drool when I’m peeing, and I tear up at the sight of tiny broken birch branches in the snow. Sometimes my left hand jerks up, leading to slapstick scenes in which I involuntarily chuck a glass of water over my shoulder. In 2011, at the age of 51, I was diagnosed with Parkinson’s. After 10 or maybe 15 years, the doctor said, I would start needing help. But it was also possibile that I would grow old with Parkinson’s. “It won’t kill you,” he said.

It will end crappily though, I thought.

The typical patient with Parkinson’s becomes disabled after eight to 10 years, but this typical patient does not exist. Everyone is different. Six years after being diagnosed, I was still on the tennis court. Then everything went wrong. Within a few months I became a wavering wreck. Walking turned into stumbling and I was forced to shuffle along behind a frame.

The time had come for brain surgery, my neurologist declared, and I was admitted to a clinic in the north of the Netherlands “for observation”. It took me several days to get used to the other patients. There were seven of them: three men and four women. I watched their nonsensical tremors and how they moved, step by petty step, as they tried desperately to swerve the wheels of their walking frames in the right direction. They ate in silence. One of them, a grumpy farmer from the countryside, sat quietly urinating on the worn-out lift chair.

One patient, a man in his 70s with a sturdy head and a weathered gaze, sat opposite me during dinner. Crouched like a frightened bird, he ate his sauerkraut mash while keeping his mouth close to the plate and drooling. From time to time some of the food fell back from his fork or from his raw, red swollen lower lip. When his plate was half empty, a nurse mercifully fed him a few more bites. His chin sagged on to the plate, his gray beard dipping in the cold sauerkraut mash.

My God. I had pictured hallucinations. I had read that Parkinson’s patients have a much greater risk of dementia. I had accepted that one day my wife would have to cut up my food and tie my shoelaces. I had scoured eBay for a reasonably-priced mobility scooter. I had more or less come to terms with all that, but after spending time at the clinic, my neurologist’s remark – “It won’t kill you” – took on an entirely new meaning. If everything goes wrong, I thought, this is what lies ahead of me. And it won’t even kill me.

What was worse? The looming oblivion of dementia or the cruel physical failures that come with Parkinson’s disease? Was it better to be trapped in a confused mind, or have a lucid mind while being trapped in a rebellious body?

Over recent years, I had discussed these kinds of questions with a friend of mine named Joop. We met occasionally and talked about dying, as if we were discussing a long-term weather forecast. Joop suffered from Alzheimer’s and had started to forget the basics of daily life. What he did know was that he didn’t want to die the way his father did, in a nursing home. “I don’t want to end up chasing after the nurses,” he told me.

Even as we replace old hips or knees or organs with new ones, and even as average life expectancy continues to increase, our brains keep on ageing. Neurodegeneration is the price we pay for the intense human drive to deny that existence is finite. Sooner or later our brains start to falter, nerve cells break down, and we end up in a nursing home, chasing nurses, chasing shadows, chasing ourselves.

I understood Joop’s deepest fear only too well. Nico, my father-in-law, was 91 when, in the middle of the night, he mistook his wife for an intruder and attacked her with a kitchen knife. Shortly after the incident, he was placed in the closed ward of a geriatric facility. That image never left my mind: the helplessness of the confused man we left behind when the lock of the glass door clicked, his bewildered eyes staring at us in an unstoppable kind of loneliness. Weeks later, when we were visiting Nico, he reproached his wife for neglecting him. She never came to visit him, he grumbled, even though less than an hour beforehand she had fed him pieces of bread, with tears in her eyes.

On our way home, it hit me that I would rather die than end up like that. For the first time, I seriously considered the possibility of one day voluntarily ending my life. After all, I thought, the Netherlands has the best-regulated voluntary euthanasia system in the world.

Until the 1950s, the historian James Kennedy has argued, the Netherlands was more conservative, more religious and less prosperous than most other European countries. Then everything changed, and this fearful nation turned into a pioneer. We became an open, liberal society that led the way on ethical issues. We tolerated drugs, legalised abortion, and our prostitutes paid taxes.

Where we had once been devout and Calvinist, in the 60s we entered a godforsaken era. Churches were turned into shops or apartments. By the end of the century, Christian political parties had lost their grip on power, and their dogmas no longer dictated matters of life and death. The nation had long debated the question of whether assisted death should, in certain cases, be legalised. And in 2001, the Dutch parliament voted to make the Netherlands the first nation in the world to legalise euthanasia. Central to the argument in favour of the new law was the right to self-determination. “My death is my own,” as the Dutch say.

Today, nine out of 10 Dutch citizens support the euthanasia law, which went into effect in April 2002. This law allows physicians to honour requests to assist a patient who wants to end their life, if there is “unbearable and hopeless suffering” with no hope of improvement. This means that a physician could, for example, prevent someone with lung cancer from dying choking in their own blood.

The debate did not cease once the law was passed. New groups of patients demanded an even more liberal interpretation of the same law. And after every verdict that broadened the criteria for euthanasia, another group of citizens campaigned for even more progressive legislation. With every new demand, the debate would fire up once again. Supporters see the expansion of the law as moral progress, while opponents predict that we are moving towards a society reminiscent of Nazi Germany, where we get rid of those deemed “useless”, such as the very elderly or those with severe mental illness.
Nevertheless, the euthanasia debate seems to have entered a faltering phase. A very un-Dutch thing has happened. We appear to be tongue-tied. The Netherlands – the country that, more than any other, wants to believe in every person’s right to voluntary death, the country that talks lightly about painless death as it were a money-back guarantee – is struggling with the dilemma surrounding dementia and death.

I first met Joop on a cold and rainy September day in 2012. He was in his 70s. A year after he was diagnosed with Alzheimer’s, Joop was still remarkably fit. But when he started telling me the story of his choir and their performances in nursing homes for the third time in 20 minutes, I realised dementia had already disrupted his short-term memory.

Even though Joop was unaware, in that moment at least, of how much his illness had already begun to eat away at his mind, he knew what was in store for him. He could not let go of the images he had seen in those nursing homes. He had decided that when the day eventually came that he could no longer live with Janny, the love of his life, he would rather die.

“How do you think that day will go?” I asked him. He imagined that it would almost be an ordinary day. His children and grandchildren would come to say goodbye. “And then the doctor will walk in and give me an injection,” he said.

That might have been somewhat naive. For some time, Janny and Joop had been looking for a doctor who would be willing to help him die at the time he had chosen: the day when Joop was no longer capable of living at home. The doctors they had spoken to had explained that until Joop’s suffering was unbearable, they could not perform euthanasia. But when Joop asked, “What will you do when my dementia is more severe and I’m incompetent?” the doctors explained that, at that stage, they could not perform euthanasia.

I don’t think Joop ever completely understood this catch-22. Dementia poses special problems for euthanasia cases. Under Dutch law, a doctor is allowed to help a person with severe dementia to die, if that patient had prepared an advance euthanasia directive back when they were still mentally competent. Joop had one of those. He assumed everything had been arranged. But it hadn’t.

Of the 10,000 Dutch patients with dementia who die each year, roughly half of them will have had an advance euthanasia directive. They believed a doctor would “help” them. After all, this was permitted by law, and it was their express wish. Their naive confidence is shared by four out of 10 Dutch adults, who are convinced that a doctor is bound by an advance directive. In fact, doctors are not obliged to do anything. Euthanasia may be legal, but it is not a right.

As doctors have a monopoly on merciful killing, their ethical standard, and not the law, ultimately determines whether a man like Joop can die. An advance directive is just one factor, among many, that a doctor will consider when deciding on a euthanasia case. And even though the law says it’s legal, almost no doctors arewilling to perform euthanasia on patients with severe dementia, since such patients are no longer mentally capable of making a “well-considered request” to die.

This is the catch-22. If your dementia is at such an early stage that you are mentally fit enough to decide that you want to die, then it is probably “too early” to want to die. You still have good years left. And yet, by the time your dementia has deteriorated to the point at which you wished (when your mind was intact) to die, you will no longer be allowed to die, as you are not mentally fit to make that decision. It is now “too late” to die.

It is a sad story. The right to die has been discussed for so long now in the Netherlands that we have come to believe we each have the right to die when we want. But when push comes to shove, the patient is not the one who decides on their euthanasia. It is the doctor who decides, and no one else. For the thousands of dementia patients who thought they would escape the worst of the disease, the Dutch euthanasia law is an utter failure. In 2017, there were 6,585 official cases of euthanasia in the Netherlands, the majority of them for cancer patients. By contrast, since 2012, only seven people with severe dementia died by euthanasia. Almost no one with dementia is able to die “on time” – that is, when they actually wanted to.

In 2008, when he was no longer able to write, the Flemish author Hugo Claus, who had several times been tipped to win the Nobel prize for literature, chose euthanasia. Claus was suffering from Alzheimer’s, but was mentally fit enough to make the decision to die. His decision was seen by many as “brave” but it was also strongly criticised, especially in Belgium, which had followed the Netherlands in legalising euthanasia but was still facing highly outspoken Catholic opposition that considered euthanasia a grave sin.

And yet the death of Claus helped bring about a shift. According to the sociologist Hugo van der Wedden, those with dementia were given a voice, and were listened to more often than before. The law itself didn’t change, but some doctors changed their interpretation of what constitutes unbearable suffering. The fear of future suffering was recognised by doctors as unbearable suffering itself and, as a result, some doctors are now more willing to provide euthanasia to people in the early stages of dementia.

Still, the catch-22 remains. The patient must still be deemed mentally fit to confirm that they want to die. If they linger too long, if they want to see one more spring with flowering apple trees, and subsequently slip into a deeper dementia, the opportunity for an early death will have passed. The only thing left will the long detour to the grave.

Since 2002, roughly 150,000 Dutch people with dementia have died. Tens of thousands of them stated their wish in an advance euthanasia directive. Yet most of them died “too late”, because choosing to die “too early” proved to be too hard. During the first few years after the euthanasia law took effect, not a single patient with severe dementia died the dignified death that they had hoped for. In recent years, only one in a hundred patients with dementia managed to die in the second-best way, which is “too early”. That was what happened to Joop, whose doctor helped him die on 8 May last year.

On a Monday evening in February 2016, 1.5 million Dutch viewers watched a woman named Hannie Goudriaan die on television. In the documentary, we see Hannie just before her euthanasia. At one point, someone asks her whether she truly realises what is about to happen.
“What do you mean?” she answers.
Does she know why the doctor is stopping by?
“Oh, I don’t know,” she says.
“You want to go, right?” asks her husband, Gerrit.
“I want, uhm, ready, well, just chop-chop.”
“Are you sure?” her husband asks.
“Yes.”

On screen, Hannie Goudriaan is a woman of advanced age with thin, short gray hair, a surprised look and thin, tightly closed lips.
“Don’t you feel sorry for me?” her husband asks as the euthanasia doctor sits down opposite his wife.

“Yes,” Hannie says. “That’s why, chop-chop.”
“It’s time, baby,” Gerrit says. “Be brave now. You have been so very brave for so long.”

He puts his arms around her, his head on her shoulder – as if he is looking for her to comfort him. Hannie lets it happen. Her husband holds her. From the drip needle attached to her left hand, a transparent tube is connected to the syringe that the doctor is holding. With his other hand he is holding two fingers of Hannie’s left hand. Then the doctor injects the fluid into the vein. “It’s horrible,” Hannie, 68, says, before she dies.

Hannie Goudriaan (right) in a documentary about euthanasia shown on Dutch TV in 2016. Photograph: NTR


Hannie Goudriaan had known where things were headed. She had semantic dementia, a rare disease that slowly and inescapably takes a person’s language away. Years earlier she had written a will, which stated that she wanted to die as soon as she was no longer able to communicate properly. Her personal doctor considered her wish for a while, but felt he could not be certain that she wanted to die. He referred her to the End of Life clinic, established in 2012 by the NVVE, the Dutch Right to Die organisation. The clinic is where people can turn to when their doctor refuses to help them. However, the clinic does not guarantee that it will be able to grant a death wish. Its physicians will consider the same question, which is: can this be done within the law?

The doctor who helped Hannie to die, in 2015, a year before the documentary was broadcast, is Remco Verwer. He read her will and spoke to her case manager before conducting seven conversations with her. “There is nothing left, it is empty inside, I can no longer do anything, I have lost everything, I want to go,” she said in a lucid moment. Verwer said: “She had become what she had never wanted to be.” After her death, the commission overseeing the practice of euthanasia determined that Verwer had handled the case “with caution”.

And yet many viewers were stunned by what they saw on TV. “This is murder with one-and-a-half million witnesses,” Victor Lamme, a professor in cognitive neuroscience, tweeted after having watched the documentary. A day later he repeated the raw accusation on De Wereld Draait Door, one of the most-watched primetime shows on Dutch television, while Verwer sat across from him and tried to explain that Lamme had only seen what he wanted to see.

One reason the public was shocked is that they had actually seen how a doctor had ended a woman’s life. It’s one thing to vent your opinion on a euthanasia law that remains vague or theoretical to you. Death entering your living room while you’re sipping your coffee is a different experience.

The documentary, which had aimed to show the reality of the End of Life Clinic, also revealed another truth. We are comfortable talking about our own deaths, but when it comes to the deaths of other people, we feel differently. As much as we don’t want to end up in a nursing home, lost and lonely, a mere shadow of the people we once were, we will maintain that grandfather “seems happy enough”, wandering through the hallways in his underwear.

Likewise, we value control over the end of our own lives, but cramp up when a loved one says she is “finished” with hers. “Isn’t it too soon?” we ask. When we’re the ones staying behind, death seems harder to accept. Apparently, the death of a loved one is far more frightening to us than our own mortality. As the German sociologist Norbert Elias once said: “Death is a problem for the living.”

One Sunday last year, I ask my wife to join me in the garden, underneath the old apple tree. Finally, we discuss what lies ahead of us. “Growing old together shouldn’t have been like this,” I say. “I am only half the man I used to be. I know. But you having to tie my shoelaces, push my wheelchair and maybe even feed me bites of sauerkraut mash … ”

“Don’t be silly,” my wife says. “I have always known that this could happen. Or the other way around. That you would have to push me.”
That’s when I show her the envelope holding my advance euthanasia directive. It’s not an easy thing. What once seemed a philosophical and political problem becomes absurdly different when you have to explain it to the one you’re leaving behind.

“I have always known how you felt about this,” she says.
“I myself didn’t know for a long time.”
“Tell me,” she says.

“Daily inconveniences,” I say, “I am willing to bear. There is simply no getting away from that. The stupid suffering. I will slowly become disabled – but I think I can live with that. Perhaps I will get used to the jerking of my head, the pain at night, the leg that always wants to go in another direction, and the endless tapping of my fingers … maybe a nurse will have to give me sponge baths … good lord … as long as I’m able to read, I’m even willing to wear a diaper.”

I can see her thinking: you’re trying to play it cool. Have I already forgotten what that nursing home was like? “I couldn’t care less about dignity and decorum – those were gone the moment I wet myself for the first time. But if I no longer know where I am, if I begin to disappear and become someone else, if I no longer recognise our children, then it’s time to close the book.”

The wind rises. The sweet smell of summer. She asks what it is that I want.
“I thought I knew. I thought I wanted to stay a step ahead, to die in the early stage of dementia. I just had to find the courage to ask.”
“But … ?”
“Then I changed my mind. This is not about my courage.”
She stares at me, sceptical, hesitant.
I try to explain that I’ve come to realise that my death is not a big deal to me. What do we know about death? Death is nothing. We will never have a clue about it. How could I possibly be afraid of it? There is no reason to be. Why are we so obsessed with the idea that we must stay in control? For whom?

“This isn’t about me,” I say. I take a deep breath. “My death is not my own. My death will only ever mean something to those I leave behind. And if I’m not terribly wrong, I won’t even know the half-death that severe dementia is supposed to be. Just let me go under, slowly drift off, past the point of nothingness, the point of no return.”

“There is not one doctor that will help you,” she says.
“No. A doctor will not do that.”
I tell my love that I’ve made up my mind. “I hope it never happens, but if the day should come that I lose my mind and the ability to convince the doctor of my wish to die, someone else will have to make the decision for me.”
“But doctors don’t do that.”
“No, they don’t.”
“Then who?”
“The others. The ones who are left behind … 

And then I explain to her, carefully searching for the right words, that I still believe in the right of self-determination. We didn’t ask to grow old, did we? But in our desire to maintain self-control – a tragic and lonely desire – we sometimes forget about the others. I understand now that no one dies alone, that there are always those left behind who have to deal with that. And that gives us the moral obligation to live on.

“The right to die,” I say, “must be the right to allow another person – not a doctor, but a loved one – to make the decision about the ending of your life. That is a very big deal. If only because it is forbidden by law. That law must be changed, and that will take many years.”

I go on: “But if you can see my pain, if you can feel my fear, if you think that I have become a sad leftover of a human being … then you can put that pill in my porridge.”
She finds it an impossible thought. How could anyone ask such a thing?
“You can say no.”
“And then what?”
“Then I’ll have to look for someone else. That is my only wish, that I am the one who decides who is to make the decision.”

That thought is just as painful and impossible as the one before.
I try to calm her down. “It will be your decision when I die, whatever that may be.”
“Well, if that’s your choice … ” she says. Blossoms drift softly on to her lap.
She will help me, she says. As she has always done. “No matter what,” she says. “I will take care of you until your last breath.”

Translated by Nephtalie Demei

https://www.theguardian.com/news/2018/aug/10/my-death-is-not-my-own-the-limits-of-legal-euthanasia