Archive for December, 2010

Message from the editor

Welcome to the fall edition of e-Parkinson Post.

In this issue, we explore some of the challenging issues that emerge as Parkinson’s advances:

  • deep brain stimulation, as a surgical option for when Parkinson’s medications become less effective;
  • management of swallowing problems, psychosis and dementia in Parkinson’s;
  • a personal account of caregiving in the later stages of Parkinson’s;
  • advocating for better financial security and caregiver support for individuals and families.

Fresh from the recent World Parkinson Congress held in Glasgow, Scotland, Barbara Snelgrove, Parkinson Society Canada Director of Education and Support Services shares what she learned.

We profile some of the exciting research projects we are currently funding and announce new awards for the national research program.

Our thanks to everyone who helped make Parkinson SuperWalk a huge success across Canada. The national prize winners are listed in this edition.

Your comments, questions, thoughts and ideas for future issues are always welcome. You can send them to editor@parkinson.ca.

As this is our last issue before the holidays, we wish you all the best of the season.

We invite you to celebrate the season with a special gift. Make your donation now to get your end-of-year tax receipt. Visit www.parkinson.ca, to make a gift to honour or commemorate that special person and show your support for people living with Parkinson’s.

Marjie Zacks
Editor

Marjie Zacks

Ask the Expert – deep brain stimulation surgery

In the decades since deep brain stimulation surgery (DBS) was first used to treat Parkinson’s symptoms, over 80,000 people worldwide have received DBS. Each year, about 10,000 DBS operations are conducted on people with Parkinson’s disease. Canada is a leader in this area, with neurologists and neurosurgeons coming here from all over the world to train in how to do the procedure. We have asked distinguished neurosurgeon Dr. Andres Lozano to give us an overview of DBS.

Dr. Andres Lozano Dr. Andres Lozano
Professor and Chair, Division of Neurosurgery,
University of Toronto
Canada Research Chair in Neuroscience

 

What is deep brain stimulation (DBS)?

DBS is the introduction of stimulating electrodes into a specific area of the brain to treat the symptoms of Parkinson’s disease.

Which areas of the brain are targeted?

If you imagine a loop in the brain with several stops along the loop, there are at least three targets we can choose along this circuit, depending on the Parkinson’s symptom. For tremor, for example, the thalamus is the best target. For rigidity and other motor symptoms, the subthalamic nucleus and globus pallidus appear to be equivalent.

Who is the best candidate?

The symptoms that respond very well to DBS surgery are motor fluctuations, tremor, rigidity and slow movement. So if people are not getting the most benefit from their levodopa therapy, for example, the medications are not lasting as long and people are experiencing on/off fluctuations through the day, or if tremor, rigidity and slow movement are getting worse, then it may be time to consider DBS. Roughly 15% of patients with Parkinson’s could benefit from DBS surgery. It is a major plus if the person has strong family support.

Are there people unsuited to DBS?

Some people with Parkinson’s will be excluded if they have another medical condition that makes them less likely to benefit; for example, significant cognitive problems, psychiatric problems or a condition requiring them to have many MRI images throughout their lives. The safety of MRI has not been fully established yet for patients with implants.

Is age a factor?

With age, patients become less responsive to both drugs and surgery and the benefit-to-risk ratio becomes less favourable, so we are less enthusiastic about offering DBS surgery to people over 70. Since older people also have much more medical co-morbidity, such as heart disease, we think very carefully before offering DBS to people at an advanced age.

Is consideration being given to offering DBS earlier in Parkinson’s?

Indeed. There can be opportunity costs associated with waiting. For example, people may have to give up their employment or may decide to decline a promotion because of Parkinson’s and its rate of progression. Surgery may be able to help here. There is a general trend to offer surgery earlier and earlier. Some studies are specifically looking at using DBS within five years of onset instead of the average 12 years after diagnosis. This, of course, has to be balanced with the small, but not absent, risk of the surgical procedure and treatment.

What does the procedure involve?

We can put patients to sleep if they are anxious, but the procedure is best done with the patient awake so we can select a better spot for the electrodes. Before the procedure, patients have an MRI scan of the brain. Then a frame is placed on the patient’s head. During the surgery, we make two openings in the skull and pass the electrodes through. Once the electrodes are in place, we put in a battery in the chest, underneath the collarbone. Next, we tunnel a cable from the electrodes in the head to the battery in the chest – it goes underneath the skin behind the ear, down the neck, over the collarbone, and into the chest. Patients usually go to sleep for that part. We then connect the battery to the electrodes. Using a device similar to a TV remote control, we point a remote controller through the skin to the implanted battery to change the settings and control how much current is delivered to the brain.

Does the device stay on 24-7?

Yes. When the brain is missing dopamine, certain areas of the brain malfunction or misfire. That misfiring is transmitted in the circuits of the brain and causes a person to have tremor, not be able to initiate movement and so on. With DBS, we are able to block or stop that misfiring so the brain can work in a more normal way.

What are the risks of DBS surgery?

Every time you operate on the brain, something bad could happen. We tell patients that there is a 1-2% risk of serious complication relating to the surgery. The worst that could happen is there could be bleeding in the brain when the electrodes are introduced. It happens in less than one in 100 cases but is potentially very serious. Next, there could be problems when the device is turned on and off; there could be a side-effect from the stimulation but this can be controlled by turning the machine down or off. Thirdly, the hardware could break down, the batteries could wear out and the person could get an infection. Those are the three kinds of at-risk effects we see: risks relating to surgery, stimulation and hardware.

After surgery, what kind of maintenance is required?

Initially, people come in for three or four sessions of programming until we find the best stimulation parameters. After that, they have a check-up every six to 12 months. We were using batteries that last four to five years but now we also have the possibility of inserting a rechargeable battery that requires one hour of recharging per week and lasts eight or nine years instead of five.

How long do the benefits of the surgery last?

Parkinson’s is a multi-faceted illness. For symptoms such as motor fluctuations, tremor and rigidity, the benefits will last forever. However, because Parkinson’s is a progressive illness, other symptoms will appear; for example, cognitive decline, speech problems, balance problems, problems with bladder and sexual function. These will continue with or without medication, with or without surgery. So some symptoms are very well treated forever and others are not influenced by the surgery.

In what new directions is DBS heading?

My research team and others are looking at ways to address the difficult non-dopamine-responsive symptoms such as cognitive problems, depression and walking difficulties. We’re looking to see if we may be able to go into different areas of the brain to treat those. DBS is also being studied for its potential to treat other neurological conditions and psychiatric disorders.

Deep Brain Stimulation for Parkinson Disease: An Expert Consensus and Review of Key Issues
(Abstract of article published in Archives of Neurology, October 11, 2010 Online edition.)

Beware the miracle cure
(Oct. 23, 2010 National Post article on deep-brain stimulation.)

Maintaining mental well-being after deep brain stimulation

Dr. Marjan JahanshahiDr. Marjan Jahanshahi
Professor of Neuropsychology
UCL Institute of Neurology & National Hospital
London, UK

A primary goal of DBS surgery is to improve quality of life for people with Parkinson’s. However, notes, Dr. Marjan Jahanshahi, “The aim is to improve the motor symptoms of Parkinson’s without creating negative impacts on the non-motor aspects.” Recognizing that non-motor symptoms such as cognition, mood and behaviour problems can be just as disabling as the motor symptoms, Dr. Jahanshahi, professor of neuropsychology, UCL Institute of Neurology and National Hospital, London, UK offers some suggestions for preventing adverse effects on cognition and mood and maintaining mental well-being after DBS.

Careful selection of DBS candidates. A detailed assessment with a neuropsychologist, including screening for dementia, psychiatric illness such as treatment-resistant major depression and untreated psychosis, and the presence of suicidal ideation – thoughts of suicide. People with these conditions are not recommended for surgery. In general, in carefully selected people with Parkinson’s, surgery does not produce any major adverse effects on cognition.

Pre-surgery counselling of individual and families. Educating individuals and families about what to expect is important. Having brain surgery is a life event and the period around the surgery can be a time of uncertainty and stress for the person with Parkinson’s and the family. Informing them about what to expect can help them mobilize their social support system to get practical and emotional support from family and friends, which can help reduce the stress associated with the surgery.

It is also important to make sure that people have realistic expectations about what surgery will do for their specific motor symptoms, as unrealistic expectations of the surgical outcome can lead to disappointment and influence people’s adjustment after surgery.

Dr. Jahanshahi notes, “Because of the rapid changes in motor function brought on by surgery, someone who was dependent on a caregiver for help with daily activities may have become completely independent again. People may have to re-negotiate roles within the family. They need time to adjust to the changes.”

Extensive monitoring and follow-up. It’s important that doctors monitor non-motor symptoms like changes in cognition or changes in psychiatric status from before to after surgery, to make sure these aspects don’t get worse or emerge following surgery. However, communication with doctors is a two-way process and patients and caregivers also need to report back if there are any new changes that they think are not right. Being alert to problems and managing them early can prevent more problems later on.

Prompt management / treatment of problems. Noting that a minority of people, 15-20%, experience some psychiatric problems after surgery, Dr. Jahanshahi says that some of the changes such as confusion and hypomania (elevated mood and activity), are short-lived. “They are there immediately after the operation, then disappear, in the majority of cases.” Many of the more long-term problems are treatable and can be potentially overcome by adjustment of medication, direct treatment or adjustment of stimulation. For example, apathy and depression could be due to the rapid reduction in medication after surgery, so gradual reduction of medication is the best option. Anti-depressants can be prescribed for depression. When present, cognitive or psychiatric problems could be a result of the electrode contacts not being in the right section of the brain target or they could be due to stimulation spreading beyond the target; so a readjustment of the electrode contacts or stimulation parameters could be a solution.

In addition, Dr. Jahanshahi suggests that some individuals and families may benefit from psychotherapy such as cognitive behavioural therapy to help with adjustment to new roles. “After years of living with Parkinson’s, people fall into daily routines but once mobility and activities of daily living have improved after the surgery, people’s whole outlook may need to be shifted, as well.”

Life after deep brain stimulation

The choice of whether or not to have DBS is a very personal decision. Two members of a DBS Support Group facilitated by the Movement Disorders Clinic at Deer Lodge Centre, Winnipeg share their experiences:


Don Dietrich

Don DietrichI had DBS surgery six years ago. My old pal Parkinson’s was taking over my life. I had severe cramping on my left side, left leg and foot, to the point that my toes turned under and I ripped off a toenail. The only way I could find relief was to lie flat on the floor for hours at time. The cramping would subside but return when I stood up.

Having the surgery has been a godsend. It has created some freedom for me. I remember coming out of the surgery hungry and asking for food. I was there shovelling food into my mouth when the surgeon came in and asked, “What are you doing?” I said, “I’m just having some supper.” He said, “No, you’re using your right hand!” Before then, I couldn’t balance a pea on a fork. So right from that moment, I knew good things were happening.

I would still experience the occasional cramp but I can adjust the stimulator to give me enough power to take it away. As a past athlete, I’m in tune with my body, so I can be a bit fussy. It took about 18 months to get the stimulator settings to where I wanted them to be.

Initially, I cut my Parkinson’s medication by about 70%. Over the six-year span, I have increased the dose, working closely with my neurologist and the nurse.

Recently, my stimulator had a total re-set, where everything was shut off and started from scratch, as if I was a new patient. The new settings have worked incredibly well for me. At the side of my house, there is a dog kennel that needed to be dismantled. It’s been there for a while and I didn’t try to take it down before because I thought it would take forever. However, with my new DBS settings in place, I did it in 30 minutes.

Sometimes, I wonder if perhaps we wait too long to administer DBS. I wonder if we shouldn’t do it earlier. I guess the brain is pretty complex, so how do you know when it is the right time? I think instead of waiting until someone is almost a burden to society maybe we could administer it in time so people can get in an extra 10 years of purposeful life.


David Toews

David ToewsFor the first three years after my Parkinson’s diagnosis in 2001, I was able to continue working in maintenance instrument and controls at the University of Manitoba. As the disease progressed, I enquired about short-term disability in 2003. The occupational nurse and my family doctor helped me with the process. After a year, I went on long-term disability.

Over the next few years, as my medication dosages kept increasing, my neurologist, Dr. Hobson, suggested I consider DBS surgery. It seemed like the answer. Perhaps it would give me more quality time to spend with my family and enjoy my grandchildren. It would also allow me to decrease my medications and help ease the side-effects.

For the first three weeks after the surgery, in 2007, I was so weak, I could barely lift a box. My wife Carole and I were in the process of moving into a ground-floor apartment but I wasn’t supposed to do any bending or heavy lifting. As time progressed, I felt more capable of doing things I had done before. I was also able to cut my medication by about half.

Since the surgery, my tremor is virtually gone, except, for instance, if I have to hold a telephone for a while, so I use a headset instead. I think my voice has been affected a bit, so I do vocal exercises and attend a once-a-month class for Lee Silverman Voice Treatment graduates. One area where DBS hasn’t helped is with dizziness.

Before the surgery, I was more compulsive. Now, I’m more hesitant and not as bold but I think that could be part of the Parkinson’s itself. Because the brain is affected by the disease, some brain processes can become difficult. I experience some memory and mood problems. Relaxation and exercise are beneficial but finding the motivation can be difficult at times. That’s when I need help. My wife Carole is very helpful. We can also talk to the doctor.

Recently, I had my three-year post-surgery assessment. It went well.

I am thankful to God for my healthcare team and the fact that I was able to have DBS surgery which has given me and my family a better quality of life and enabled me to do things I would not otherwise have been able to do.

Managing Advanced Symptoms

As Parkinson’s progresses, some symptoms increase in intensity, others may appear for the first time. In this feature, we ask clinicians and researchers to comment on a few of these.

Swallowing

David H. McFarlandDr. David H. McFarland
Professor, School of Speech Therapy and Audiology
University of Montreal
Speech-language pathologist
Montreal, Quebec

Angie SouthAngela South
Speech-Language Pathologist,
NPF Centre of Excellence London Health Sciences Centre
University of Western Ontario
London, Ontario

Swallowing problems are common in Parkinson’s and may occur with varying degrees of severity early in the disease, not just as Parkinson’s advances.

Signs of swallowing problems include:

  • difficulty with manipulating and forming a food bolus (ball)
  • sensation that food is stuck in throat
  • difficulty swallowing solids
  • coughing when eating or drinking
  • choking
  • wet or gurgly voice
  • eating takes longer
  • drooling
  • recurrent chest infections
  • weight loss

Swallowing difficulties may also exist with no overt signs. People are often not aware of their swallowing problems because of the sensory and other deficits associated with Parkinson’s. “One of the insidious things about Parkinson’s is silent aspiration where food or liquid enters the airways and goes into the lungs without any signs or symptoms. There’s no coughing.” says Dr. David McFarland, a professor in the School of Speech Therapy and Audiology at the University of Montreal and a speech-language pathologist.

“The possibility of this developing into aspiration pneumonia depends on such factors as the overall health of the person, the degree of oral care and the presence of food or liquid in the lungs.” Poor oral hygiene, associated with the difficulty people have brushing their teeth, often means that bacteria in the mouth gets swallowed and ends up in the throat, airway and lungs. Aspiration pneumonia is a major cause of death in Parkinson’s.

Swallowing problems can have major impacts on quality of life. When eating is no longer easily enjoyable, people begin to eat less or not at all, leading to poor nutrition and weight loss. People may also severely limit their socializing as it relates to meals.

If people with Parkinson’s or family members suspect a swallowing disorder, the first step is to see the family physician for a referral to a speech-language pathologist for an evaluation.

The speech-language pathologist will do a clinical assessment of swallowing and may conduct the modified barium swallow study (MBSS), which is the gold standard test for evaluating problems with swallowing. The test X-rays swallowing as the person eats and drinks. “We look at such things as the timing of the swallowing, airway protection – whether food or liquid is entering the airway, and how much food is left behind in the mouth and throat after swallowing.” says Angela South, speech-language pathologist at the University of Western Ontario, London, Ontario. “That’s important to know because people may not report any changes or manifest any symptoms but when we X-ray them, we find these problems hiding underneath the surface.”

An alternative test of swallowing, the fibre endoscopic evaluation of swallowing (FEES), uses an endoscope to see what happens to food and liquid as the person swallows.

Since Parkinson’s medications do not appear to alleviate swallowing problems and deep brain stimulation surgery may worsen swallowing for some people, the classic approach to managing swallowing problems is to work with changes in posture and behaviour in order to make it easier to swallow and reduce the risk of aspiration. Diet modification – for example, changing food textures, thickening liquids, softening food – may eventually be necessary if swallowing worsens. The speech-language pathologist will develop a customized program to make swallowing as safe as possible, to reduce the risk of infection and complication, and to maximize quality of life.

Efforts are also being made to improve the underlying impaired physiology of swallowing through behavioural interventions such as:

  • Tongue exercises: However, not all researchers agree that lingual strength is affected in Parkinson’s.
  • Expiratory muscle strength training: Strengthening the muscles used in coughing. A small 2009 study by Dr. Christine Sapienza, professor and chair of the Department of Communication Sciences and Disorders at the University of Florida showed that cough improved.
  • LSVT (LOUD): A voice treatment that was developed to improve communication for people with Parkinson’s and has been shown, in a small study, to improve swallowing. “It targets some of the underlying problems that are present for both voice and speech,” says McFarland who is also vice-president and co-founder of LSVT Global Inc. The intervention needs to be intensive, targeted and functionally relevant.
  • Gum chewing: Recent research from the NPF Centre of Excellence at London Health Sciences Centre found that when people with Parkinson’s chewed gum they were able to control their saliva better, so they reduced drooling, had an easier time talking because there wasn’t saliva pooled in their mouth, and reduced the number of choking and coughing episodes they had with their saliva. Angela South, who was a researcher on the original project is now taking it a step further to see what impact gum chewing has on the swallowing mechanism. “We will X-ray the swallowing while people are chewing gum, have them rest for a few minutes and then measure it again to see if there is any carryover effect.”

Proper management of swallowing problems requires a multidisciplinary approach and usually requires the services of a registered dietitian for balanced nutrition and suggestions on ways to make modified diet foods appealing. Also required is an occupational therapist for recommendations on ways to improve the eating environment. A social worker may be able to assist people with making social adjustments to their changing dietary needs and habits.


Psychosis

Dr. Susan FoxDr. Susan Fox
Associate Professor of Neurology, University of Toronto
Neurologist, Movement Disorders Clinic, Toronto Western Hospital

Psychosis is abnormal thoughts and perceptions. In Parkinson’s, the most common symptom is hallucinations – usually visual, but sometimes auditory, olfactory (smell) or tactile. It can sometimes progress to the point that people become paranoid and delusional, for example, thinking that a spouse is having an affair or that there’s someone in the house trying to steal things.

“On average, 50% of Parkinson’s patients may experience psychosis at some time in their lives. It is more common as the disease advances,” says Dr. Susan Fox, associate professor of neurology at the University of Toronto and a neurologist at the Movement Disorders Clinic at Toronto Western Hospital.

Dr. Fox says a large proportion of the 50% may have mild, benign or minor visual hallucinations. “On going to sleep or waking, they may see a person or an animal in their bedroom and it doesn’t distress them. Those patients may not need treatment specifically. However, for a smaller number of people, the psychosis will be disabling, particularly if it includes delusion or paranoia, and will require more care. The prevalence of disabling psychosis has been linked to hospitalization and nursing home admission.”

Risk factors for psychosis include cognitive impairment, including dementia, and REM sleep behaviour disorder, a condition where people shout, move around, hit and physically act out their dreams at night. People with Parkinson’s who get urinary or respiratory infection are also more at risk of getting delirium with these infections.

Dr. Fox notes that, because psychosis tends to occur when people are on medication, it was previously thought to be just due to drug side-effects. Now, it is considered to be part of the disease process. “It’s the disease itself that primes the brain to be sensitive to medications which can trigger the symptoms.”

If individuals or family members become aware of psychosis symptoms, the first step is to tell the family doctor. The doctor can determine if there is an infection or other underlying medical problem that needs to be addressed first and then decide if the symptoms require treatment or not. “There is evidence that sometimes if you treat these symptoms early, they may not progress as much,” says Dr. Fox. “Once hallucinations start, there is the risk that they may go dormant but be triggered in the future.”

If there has been a recent increase in dosage or change in medication that seems to correlate with the onset of the psychosis, the doctor may recommend reducing the dose or stopping the drug. This could bring improvement in the psychosis symptoms but at the expense of worsening some of the motor symptoms.

There are currently two lines of treatment for psychosis in Parkinson’s: The first class of drugs is the atypical anti-psychotics. The most common one is quetiapine. If quetiapine doesn’t help, then clozapine is prescribed. However because it has a slight risk of causing a low white blood cell count, the patient’s blood has to be monitored weekly. The second group of drugs is the cholinesterase inhibitors. They are used in both people with Parkinson’s with dementia and people without dementia who have visual hallucinations. Researchers are working on developing new drugs to address psychosis in Parkinson’s without worsening the motor symptoms.


Dementia and Mild Cognitive Impairment in Parkinson’s

Alex TrosterDr. Alex Tröster
Professor, Department of Neurology
Co-Director of the National Parkinson Foundation Center of Excellence,
University of North Carolina
Chapel Hill, NC

Dementia

Dementia is a general term used to describe a variety of changes in cognitive functioning. Because different brain structures are affected by different types of pathology, Parkinson’s disease dementia tends to differ from Alzheimer’s-type dementia both in progression and overall pattern, particularly early in the dementia. “For example, severe language impairment, comprehension difficulties and rapid forgetting are less likely to occur early on in Parkinson’s disease,” says Dr. Alex Tröster, a professor in neurology at the University of North Carolina and co-director of the National Parkinson Foundation Center of Excellence in Chapel Hill, North Carolina.

Dementia in Parkinson’s disease is linked to advancing age, lower education, postural instability and gait impairment, among other factors. Nearly 30% of people with Parkinson’s will develop dementia.

Dementia with Lewy bodies is related to Parkinson’s dementia. Both are considered to be Lewy body dementias and synucleinopathies (diseases caused by the deposition of alpha-synuclein protein in nerve cells). “They seem to share a similar pathology but possibly different parts of the brain are affected at different times,” says Dr. Tröster.

The clinical difference between Parkinson’s disease and dementia with Lewy bodies is that:

  • The diagnosis is Parkinson’s disease dementia when the Parkinson’s is diagnosed first and at least 12 months have elapsed before the dementia emerges.
  • The diagnosis is dementia with Lewy bodies, if the cognitive and behavioural changes either precede or accompany the first year of parkinsonian symptoms.

“People with Lewy body dementia seem to experience hallucinations and fluctuations in attention earlier in the disease,” says Dr. Tröster. Risk factors for Lewy body dementia include sensitivity to hallucinations and REM sleep behaviour disorder.

Dr. Tröster recommends that, “When the person with Parkinson’s is having a lot of arguments with family members about whether there is a serious cognitive problem or not, then you need a referee. Be aware of the changes, don’t deny them. Seek an assessment. Neuropsychological evaluation can be helpful.”

Researchers are investigating whether medications like memantine and cholinesterase inhibitors are effective in Parkinson’s disease dementia. In Canada, cholinesterase inhibitors are currently used. Another area of research is developing assessment tools so clinicians can more accurately distinguish Parkinson’s dementia from other dementias.

Mild cognitive impairment

Some people with Parkinson’s may experience milder cognitive changes that can remain relatively stable for a long time. Studies looking at cognitive impairment early in Parkinson’s disease are finding that when neuropsychological testing is done at the time of diagnosis, it is possible to detect very subtle or mild changes that may or may not be obvious to the person with Parkinson’s or the caregiver.

Recent research is also attempting to classify mild cognitive impairment in Parkinson’s. Dr. Tröster notes that the few published studies, to date, agree on two things:

  • People with Parkinson’s with mild cognitive impairment more commonly have cognitive impairment in a single area of functioning rather than multiple areas; and
  • Non-memory impairment – especially difficulty with attention and abstract thinking – is more common than memory impairment.

Caring for a loved one as Parkinson’s advances

Frank and Carmel Boosamra

Frank and Carmel Boosamra

First Person – Carmel Boosamra

Carmel Boosamra thought she had read everything she needed to know to assist her husband Frank on his journey with Parkinson’s but she didn’t know the half of it. “I hadn’t even scratched the surface,” she says, recalling some of the challenges.

Economic impact. Frank had to sell his business. He had been a pioneer in supplying and installing solar control window film in the Ottawa area. “Having him lose his source of income was pretty traumatic for both of us.”

Loss of driver’s licence. When the doctor notified the Ministry of Transportation that Frank should no longer drive because of muscle rigidity and some cognitive decline, “that had a bigger impact on Frank psychologically than anything else. Whenever anyone asked him what was the worst thing about dealing with Parkinson’s, he would say, ‘losing my driver’s licence’.”

Co-existing health problems. Frank had heart bypass surgery 10 years before he was diagnosed with Parkinson’s in 1992, at age 52. He also had insulin-dependent diabetes and, in 1999, required surgery to amputate his foot. “The anaesthetic played havoc with his Parkinson’s.”

Medication management in the hospital. “There was a big problem trying to get the meds on time every time Frank was hospitalized.” Carmel recalls being stunned when a medical resident asked her how long her husband had been having psychotic episodes. The incident spurred her determination to educate and advocate on behalf of people with Parkinson’s. “During all the hospital stays, getting medication on time was a constant battle with the medical staff.”

Medication management at home. “As the Parkinson’s medications were no longer effective, the neurologist kept trying different drugs to see what worked best but Frank would get severe hallucinations which I found very frightening. The neurologist was a great asset to me because he took the time to help me understand what was going on. At one point, Frank was on three different types of drugs but eventually it came down to one.”

Safety concerns. “Frank was home alone while I was at work. He was falling all the time and he was hallucinating. I never knew what to expect when I came through the door at the end of my day. One time I came home and found everything removed from the china cabinet and packed away in boxes. Frank was cooking in the kitchen and something was burning in the oven but he didn’t realize it. He was in his own little world and he was paranoid that someone was coming to take everything away. It was then that I decided this isn’t good. We need to find a solution. Luckily, we had been receiving home care for three years, so they were ready to place Frank into a care facility as soon as I called them. ”

Power of attorney. “Power of attorney was something that we both discussed and planned. We arranged it while Frank was fully capable of making that decision, which made the whole process easier for me emotionally. We set up a power of attorney for finances/property and a power of attorney for personal/healthcare decisions. I highly recommend these legal avenues. Some people may feel it means giving up their legal rights or voice but it doesn’t have to be, as it is not used all the time but is available when needed.”

Planning ahead for future care. “From the start, Frank was realistic and practical when it came to his care and future needs. We had visited care facilities and decided together which one we wanted him to go to. When it was time to move, we didn’t get his choice at first, but we eventually got the one we wanted.”

Dealing with symptoms of advanced Parkinson’s. “The saddest day for me was the day we went to see his neurologist and the neurologist told me that Frank had Lewy body dementia, which can happen in late-stage Parkinson’s. That was in fall 2007. From that point on, Frank just faded completely. I could see that he wanted to say something to me but he couldn’t get the words out; his cognitive ability wouldn’t allow him to form the words. As a partner and as a caregiver, it was tough knowing he had lost that ability to communicate verbally. After a time, I got used to it. He communicated to me through his eyes. I could tell what he wanted to say just by the look in his eyes.”

Scarcity of information. “I wish I had known more about Lewy body disease. It was there long before it was diagnosed but I had no information to help me understand it. There was no resource available to tell me about advanced Parkinson’s, such as what to look for when someone starts having swallowing problems. I watched these things happen gradually to Frank but I think I would have accepted it better if had some knowledge about it.”

The toughest issue. “The loss of the person. In the last year of Frank’s life, I went to see him every day and held his hand. Our relationship was now simply holding hands. It was very sad. It’s human instinct to just persevere when you’re faced with circumstances like that with the person you love but I don’t know how I got through that.” Frank Boosamra died in July 2008.

Asked if there is anything she would do differently, Carmel says, “I did everything that was humanly possible, as a caregiver advocating for Frank, making sure we got home care when they wanted to reduce the hours, advocating with the doctors and nurses in the hospital to ensure he got his medication on time. My advice to anybody who is caring for someone with late-stage Parkinson’s is to keep advocating for them and treat each moment you share with your loved one as a precious time.”

Carmel currently serves on Parkinson Society Ottawa’s board of directors and is a member of the Ontario Advocacy Committee. She says, “Because I experienced and saw the misunderstanding and lack of knowledge about Parkinson’s that’s out there in the general public and in our government policymakers, I feel it’s a public service, on my part, to become involved and do something about that.”

Advocating for better financial security and caregiver support

Recognizing that loss of income and the added costs of living with Parkinson’s can severely compromise the financial stability and security of individuals and families, Parkinson Society Canada is advocating for action from the government of Canada to ensure that people don’t face the added pressure and worry of financial instability.

On behalf of Canadians with Parkinson’s, Parkinson Society Canada is working to address two major needs in the area of income security:

  • making life for individuals and families more financially secure while they’re living with Parkinson’s; and
  • ensuring that families are not left in poverty as a result of having lost a loved one to Parkinson’s.

Parkinson Society Canada is recommending that the Government of Canada revise existing finance policy to make it easier for people with Parkinson’s and caregivers to either retain their income or qualify for tax credits and other programs that would alleviate some of the financial and human costs associated with living with Parkinson’s.

The recommendations include:

  • establishing an advisory committee to guide income reform;
  • introducing a refundable Disability Tax Credit for low-income Canadians;
  • allowing spouses to claim the Caregiver Amount to help offset the costs of caregiving;
  • increasing flexibility in Employment Insurance sickness benefits to allow people with chronic conditions to work part-time and receive partial benefits;
  • harmonizing the application process for the Disability Tax Credit and the Canada Pension Plan Disability benefits, to help ensure people have access to the programs and services for which they are eligible and to make income security easier to attain; and
  • extending CPP provisions to protect the retirement earnings of caregivers who must temporarily leave the workforce to care for someone, without having to worry about compromising their financial security in retirement.

Through the National Population Health Study of Neurological Conditions, valuable information about the impact of Parkinson’s on individuals, families and society is being gathered. This information will bolster our efforts to effect policy change so that families living with Parkinson’s experience greater security and support.


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All material related to Parkinson's disease contained in Parkinson Post is solely for the information of the reader. It should not be used for treatment purposes. Specific articles reflect the opinion of the writer and are not necessarily the opinion of PSC.