Evidence of meeting #13 for Subcommittee on Neurological Disease in the 40th Parliament, 3rd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was parkinson's.
A recording is available from Parliament.
9:15 a.m.
Dr. Frances Squire As an Individual
Thank you.
My name is Fran Squire, and I'm a person living with Parkinson's. I was diagnosed 16 years ago, when I was teaching grades 7 and 8, completing a doctoral thesis in education, and raising two young children.
The story of diagnosis is the first hurdle that people with chronic disease must face. After finding it difficult to turn and negotiate a ski hill in 1994, my husband and I ended up several months later in a neurologist's office to hear the outcome of a battery of tests.
The astonishingly young doctor, whose name I have long forgotten, peered over his titanium frames and asked, “Do you live in a two-storey house?” Yes, I answered. “Then you'd better start thinking about moving; you're going to be severely disabled in five years. The good news is you don't have a brain tumour, but the bad news is you have Parkinson's.”
Parkinson's! But I'm only 49. Isn't Parkinson's for old people? What do you mean, “disabled”? What is Parkinson's, anyway?
But he was already closing my file—closing my file, just like that.
So here I am today, and I'm still doing okay. I am lucky, because I live in a city where access to movement disorder specialists is available, and the onset of my symptoms has been steady but slow, and responsive to medication. Others are not so fortunate.
My way of coping is to be involved, to be in control of something. I'm the past chair of the board of Parkinson Society Ottawa, where I have volunteered for nine years as a board member and editor of the newsletter. I have just completed a six-year term on the board of directors of Parkinson Society Canada, where my main interest and involvement was on the research policy committee. During my tenure we added a psychosocial research program to the scientific biomedical grants already in place. This strand of research focuses on quality-of-life issues for people living with Parkinson's and includes understanding and treating non-motor systems. I am encouraged by this direction, because as much as a cure is necessary, we still have to function within the world while we wait.
What I would like to tell you today is what Parkinson's is and what it isn't. It is not just a little tremor that affects old people. The tremor is the tip of the iceberg. Parkinson's is a complex disease that affects every aspect of an individual's life. Yes, there are the visible physical symptoms--the tremor, the awkwardness, the slowness in walking. But there are cognitive and emotional challenges as well--depression, anxiety, cognitive deficits, and sleep disorders. Parkinson's also affects entire families, with different implications at various stages of the disease.
It is called a degenerative neurological disease, and the word “degenerative” is full of meaning. You never get better; you just manage the symptoms with ever-increasing combinations of drugs. Each person's progression and treatment is unique. Often the side effects are worse than the symptoms. A cause has not yet been determined, and therefore there is no cure. The major visible symptom is a resting tremor. The other symptoms have to do with the whole system slowing down: rigidity, slowness of movement, poor balance, an awkward gait, trouble with swallowing, constipation, slowness of speech, lowered voice, loss of articulation, facial masking, lack of expression, sleep disorders, and depression.
Parkinson's is not a sexy disease. The stigma attached to Parkinson's is shown to each of us who feel the sting of an accusatory stare or the laughter from those who do not understand. No, I'm not drunk; I just stagger and lose my balance a lot. I often pitch forward when I walk and I shake when I eat.
I sometimes feel embarrassed, but there is one place I feel comfortable: within my Parkinson's support group. I'm in another smaller group of women--we call ourselves “the ladies who lunch and shake a lot”--that meets for support and friendship. We were saddened last year by the death of one of our group, and now yet another single mom, 42 years old, is dependent on a wheelchair and a personal care worker at night. Although they receive no government funding, the regional organizations try to provide many such support and educational services that help both the person living with Parkinson's and their care partners.
In closing, I would like to share an entry from my journal written several years after my being diagnosed. I was just beginning to understand the word degenerative. I think it describes the future and emphasizes the need for collaborative strategies, such as the proposed brain strategy, within the health care community to provide a brighter future for those of us living with Parkinson's.
Parkinson's is like moving inexorably down a steadily darkening tunnel. There is still some ambient light as you begin moving, but it quickly disappears. There is as yet no end to the tunnel, no glimpse of light, no room for a U-turn. For some people with Parkinson's, movement can be dyskinetic, your body and mind disconnected, arms and legs flailing with jerky spasms, somewhat like being trapped in a washing machine on the spin cycle.
Or at the other extreme, the body can be rigid and frozen, unable to take the next step. You can't call out for help, because your voice is diminished in articulation and volume. Perhaps you see hallucinations—other people or creatures in the tunnel who may be friendly apparitions or terrifying, mind-crushing delusions.
People may misinterpret your journey because your face shows no emotion; the mask of Parkinson's distances you farther from your social world. You may become seriously depressed. You shuffle down the tunnel, walking awkwardly with a peculiar gait, lurching off-balance every few steps. If you are fortunate, you will recall where you intended to go and why.
Thank you.
9:25 a.m.
Conservative
The Chair Conservative Joy Smith
Thank you very much for sharing that with us.
We're now going to begin our first round of questions and answers. It's seven minutes per person to ask the questions.
We'll begin with Dr. Duncan.
9:25 a.m.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
Thank you, Madam Chair.
Thank you to all of you for your overwhelming, powerful, and.... We won't forget what you said today. Thank you for the courage to tell your stories.
Mr. Sherwood, you talked about diagnosis. Several of you did. I've heard this over and over.
You know, my dentist follows up when I get a lousy filling—that night. I wonder how many people the doctors phone the night of their diagnosis, or a week later, to see how they're doing.
Dr. Grimes, I know you can't share the guidelines, but could you tell this committee what you're thinking about in order to improve diagnosis and treatment for those suffering with Parkinson's, and what a multi-disciplinary centre might look like?
9:25 a.m.
Associate Professor, Ottawa Hospital, University of Ottawa
One of the things we looked at when we were trying to develop the guidelines was that, as I mentioned, some other countries have guidelines, and one of the real difficulties we have in Parkinson's, when it comes to evidence-based medicine, is how much evidence-based medicine we have for treating the depression, for treating the bladder troubles or bowel troubles, or all the other things—these non-motor things that you're starting to hear about with Parkinson's.
The answer is that there's not much evidence-based medicine. If you look at the American Academy of Neurology guidelines—they just came out this year—for treating these non-motor things, they have six or eight different, huge topics in Parkinson's. They came out with three recommendations that were terrible.
So we have to step back and say, if there's not evidence-based medicine, we still need to treat people, we still need to diagnose people; how can we come up with the best way to do that in Canada? That's what we tried to do in the guidelines.
There's still a clear need for better research into coming up with better ways to diagnose people with Parkinson's. We still need to do a better job at it, because people have to rely on coming into my office and my telling them yes, you have Parkinson's, and no, there's no test that can confirm that this is what you have.
The people we see are very complicated and have many different issues, and I am definitely not an expert at treating a lot of those things—the balance issues, and which cane is the best, which walker is best, different things to help you get up out of bed, what the best exercise is for this individual when they have a bad hip as well as their Parkinson's, or a bad knee. These are all things that I'm certainly not an expert in.
This is where the multi-disciplinary team comes in. Do I call any patient that night after I have diagnosed them with Parkinson's? The answer is no, there's no time. Would it be nice to be able to do that? Yes. We are fortunate enough to have two nurses in our clinic who answer the phone and try to give out advice on the phone, but it's not easy. It's frustrating for people even when I see them in the clinic. I try to see them a month after I give them the diagnosis, and that's rather squeezing them in, because I don't have any appointments for six months.
There's no question that we need to do a better job as a team of treating this very complicated condition.
9:25 a.m.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
Thank you. Perhaps you could table with this committee the various international guidelines you've reviewed.
9:30 a.m.
Associate Professor, Ottawa Hospital, University of Ottawa
The biggest and most comprehensive ones are the U.K. guidelines. These are the NICE guidelines. They really work through all or almost all of the different aspects of Parkinson's. Those were really the basis for developing our Canadian guidelines.
The Europeans came out with some guidelines that were okay but not great. Then the Americans took the approach of, as I mentioned, only giving recommendations if they're evidence-based. That's great, and we need that, and we want to have the best evidence-based treatment options for people, but when that's lacking....
Those are really the three groups: the U.K. guidelines, the European guidelines, and the American academy guidelines.
9:30 a.m.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
Thank you.
To what extent are drugs for the treatment of Parkinson's covered under the formularies of provincial drug plans? What proportion of Parkinson's patients face catastrophic drug costs, defined as those that either threaten their financial security or cause undue financial hardship?
9:30 a.m.
Associate Professor, Ottawa Hospital, University of Ottawa
In Ontario there's a big problem. Nobody gets their drugs covered until they're 65 unless they're on some sort of assistance program, or in Ontario through the Trillium drug program, where then they are balancing out their drug costs with what their income is.
In Parkinson's, 15% of people, maybe even 20%, will have their onset before age 65. That's a large number of people who are now trying to take on drug costs. Some of them are still working, so they do get some of their drugs covered, but as you heard, that then forces them to keep working or they will lose their drug coverage, so that's not an ideal situation either.
There's definitely a big problem, with the per-drug cost for a lot of the Parkinson's medications at $200 to $300 per month. There can be up to four different medications, so the drug costs really add up very quickly.
There's definitely a big need there. With the new drugs that are coming out, there's one we have that most people are not covered for. The older medications are covered under certain circumstances, but again that varies quite a bit from province to province.
9:30 a.m.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
Would you say the average cost is about $1,200 a month depending on the drugs and what people require?
9:30 a.m.
Associate Professor, Ottawa Hospital, University of Ottawa
Yes, I think you're easily getting up there when you're looking at the costs for the Parkinson's drugs, and then there are the depression drugs and the blood pressure drugs. It quickly snowballs, because people are taking drugs for other reasons as well. So the drug costs can really skyrocket.
9:30 a.m.
Conservative
The Chair Conservative Joy Smith
With the committee's permission, may I just ask a question following something that Dr. Duncan was asking?
Dr. Grimes, when you talked about diagnosing Parkinson's you made the comment--or did I hear it right?--that it was difficult to diagnose, that you're not quite sure it's Parkinson's. So if a patient goes to a doctor and the doctor says to them that they have Parkinson's, how does that square with what you just said? How does a doctor know for sure that someone has Parkinson's?
9:30 a.m.
Associate Professor, Ottawa Hospital, University of Ottawa
That's part of the dilemma. This is a real limitation for a lot of patients.
I mean, there have been studies now such that if somebody comes into my office and they have a rest tremor, and they have stiffness and slowness, I'm right 95% of the time. If somebody comes into my office and they only have some stiffness, and they only have some slowness, and they don't have a tremor, and it's symmetric, and they have a couple of other things going on, my diagnostic rate could go down to as low as 70%.
So 30% of people are not--
9:30 a.m.
Conservative
The Chair Conservative Joy Smith
But what if they have a tremor and it's an essential tremor, as opposed to Parkinson's? How do you know the difference?
9:30 a.m.
Associate Professor, Ottawa Hospital, University of Ottawa
That's a good question. That's the condition for which I most often say to people, “You came here thinking you might have Parkinson's, but you actually have essential tremor.”
9:30 a.m.
Associate Professor, Ottawa Hospital, University of Ottawa
It's based on what the story is and what their findings are. If you haven't seen many people with Parkinson's, and if you haven't seen many people with essential tremor.... It's often not diagnosed correctly.
For a lot of the people who come to see me, when I will tell them, yes, I think they have Parkinson's, they will reply, “Well, okay, my dad had Parkinson's, and my mother has Parkinson's.” Then you start asking what their symptoms are. It becomes quite clear that they don't have Parkinson's. They actually have essential tremor. But the family's been walking around thinking that they--
9:35 a.m.
Conservative
The Chair Conservative Joy Smith
So what's the difference? The outside world, when they see you with essential tremor, might think you have Parkinson's.
9:35 a.m.
Conservative
The Chair Conservative Joy Smith
So how do you know the difference? You're the specialist, and we're just trying to find out.
Thank you, Dr. Grimes.
9:35 a.m.
Associate Professor, Ottawa Hospital, University of Ottawa
Well, I guess one of the things is that it certainly takes a while. It takes seeing a lot of people and it takes a lot of training.
The main features are that an essential tremor is a tremor that people have when they do things, whereas the Parkinson's people classically have a rest tremor.
9:35 a.m.
Associate Professor, Ottawa Hospital, University of Ottawa
It's when you're just sitting there watching TV, doing nothing, your hands are in your lap, and then your hand is shaking. Essential tremor is much more common. It's when you pick up a pen, go to write, and your hand is shaking.
People with a head tremor most often have essential tremor--that's not a feature of Parkinson's disease--but people with a chin tremor actually have Parkinson's and not essential tremor. There are all these little things that go along with trying to differentiate, but unless you see people with those conditions, it's.... In the medical community, a lot of physicians will get it wrong.
9:35 a.m.
Conservative
The Chair Conservative Joy Smith
Thank you.
I'm sorry...but it was just something you said that I just wanted to find out.
We now have Monsieur Malo.
You're hoping that the chair won't interrupt you, right?
November 23rd, 2010 / 9:35 a.m.
Bloc
Luc Malo Bloc Verchères—Les Patriotes, QC
No, but your questions were entirely relevant, Madam Chair.
Madam Chair, I am very happy that you gave us this follow-up on Mr. McGinnis' appearance before the committee. You'll remember that he told us in his testimony just how much his young son didn't want him to testify before the committee because he was worried about his father. I am convinced that, when he saw his father return home with treatment, he must have congratulated him and told him that he had done the right thing by going.
Thank you very much.