The Parkinson’s Disease Foundation (PDF), has been alerted to questions surrounding the impact of medications used to treat Parkinson's disease (PD) on risk of suicide. Such concerns have been raised on social media in reaction to the news that Robin Williams, well known actor and comedian, was living with Parkinson’s disease.
This has, in turn, raised many concerns amongst people living with PD and their families. PDF would like to address your concerns with the facts below. We also encourage community members with questions about suicide and PD to contact our HelpLine at (800) 457-6676 or info@pdf.org.
Research, although limited, has consistently shown that suicide rates for people with Parkinson’s disease are the same if not significantly lower (up to 10 times lower, according to a study found here) than the rates for the general population.
A person newly diagnosed with Parkinson’s disease is typically prescribed medication that falls under one of three main classes: levodopa (to help supplement the dopamine that is lost), MAO-B inhibitors (which keep dopamine from breaking down), or dopamine agonists (drugs that mimic the action of dopamine). All three classes of medications have a very safe profile with limited side effects, with no evidence linking them to suicide risk.
Dopamine agonists infrequently can lead to the development of an impulse control disorder, e.g., compulsive shopping, gambling, eating or sexual behavior. However, these side effects are well documented, are pleasure seeking, and suicide is not one of them. In fact, dopamine agonists have a documented antidepressant effect.
If people with PD or loved ones notice the signs of depression (listed below), please contact a health care professional.
"Although a Parkinson’s diagnosis is full of doom and gloom, it is, fortunately, more gloom than doom,” added James Beck, Ph.D., PDF’s Vice President, Scientific Affairs. “People are more likely to face depression than to commit suicide. Awareness of depression and Parkinson’s, combined with prompt treatment can help go a long way to alleviate that gloom.”
10 Signs of Depression in Parkinson’s
1.Excessive worrying
2.Persistent sadness
3.Crying
4.Loss of interest in usual activities and hobbies
It always amazes me when some celeb has a known chronic illness, somehow people seem to sit up and take an interest, and notice of it. Is it just the Media or is it me being Paranoid?
Thank you very much for this RoyProp. Just something to add quickly.
I could tell that my husband was very depressed many years before his diagnosis with Parkinson's. My problem was getting him to realise it and to accept that it was true. Once he had been diagnosed and found that depression was a common symptom amongst the younger end of Parkinson's it was as though he had permission to have depression and it wasn't his 'fault'. He was treated with anti depressants and has not looked back since.
He no longer takes the anti depressants as he has had time to rethink his hectic life style and the way he judged himself continually but knows they are there if he needs them and they work.
My first sign of PD was depression (which I sought medical help for) but it was almost two years later that I was diagnosed and treated. The PD medication itself helps a lot with the depression.
here's a letter sent by Dr. James Friedman, author and movement disorder specialist in Providence RI. The incidence of suicide is low in PD patients.
_______________________________
"Joseph H. Friedman, MD
Director, Movement Disorders Program
Butler Hospital
Dept of Neurology
Alpert Medical School of Brown University.
Parkinson’s disease, depression, suicide and Robin Williams
I was a fan of Robin Williams but never met him, and knew nothing about his depressions, substance abuse, Parkinson’s disease or anything else other than his public persona. His suicide brought to public attention, particularly within the PD community the issues of depression and suicide.
Depression is more common in PD patients than in the general community. Although there had been a running argument for decades as to whether this was “part of the disease,” that is, due to the loss of brain cells in particular parts of the brain, or whether this was a “reactive” process, “wouldn’t you be depressed if you were diagnosed with a progressive, incurable, possibly disabling disorder,” I think most PD experts would say that both answers are correct.
Depression often develops before any of the usual symptoms of PD are present, but whether this is due to the loss of particular brain cells under attack by the disease, or whether the patient is beginning to feel a little fatigued, a little slow, without apparent explanation, and starts to feel run down then depressed is anybody’s guess. But I think there’s enough evidence to indicate that both factors contribute to depression in people with PD.
Identifying depression in PD is challenging. The usual symptoms of depression: sad facial expression, soft speech, social withdrawal, loss of interest in doing things, decreased enjoyment, altered sleep cycles, weight changes, are all part of the disease, unrelated to mood. These symptoms are seen commonly in PD patients who are very happy. As a result of different notions of how to recognize depression in PD the estimates for how common it is are highly variable. Despite this variability, almost all experts agree it is increased.
What is not increased, however, is suicide. It has been a striking observation for many decades, that although depression is increased in PD, suicide is decreased. The suicide rate in PD is about 1/6, or 16% of that in a population the same age without PD. There are a number of possible explanations for this, but it has not been studied, and probably never will be.
For those who have a loved one with PD, the suicide of Robin Williams certainly makes alarm bells go off, but his history of a mood disorder that predated the onset of the PD by decades, his celebrity status, and, perhaps most importantly, his history of substance abuse, put him in a very different category than the “average” PD patient. We should all be observant and sensitive to our friends and family, but the tragic case of Robin Williams should not instill any sense of panic in our PD community."
I was diagnosed at 46 and had been prescribed anti-depressants a year earlier. Most of the time I'm ok, but recently (I guess in the wake of Robin Williams' suicide) I have found myself feeling tearful and pretty down.
This last week, the soon-to-be ex and kids were away and I was home alone. I'd had to get public transport into work, increasing my journey time fourfold, had trouble getting to sleep then waking every 30 mins due to pain, no news from my blue badge renewal enquiry (it ran out on July 23 and I'd applied a couple of weeks before), am taking out a grievance against my manager due to unfair treatment and just had my mortgage application turned down. I had a particularly bad, dark spell on Saturday.
In a lot of pain after walking back from Sainsburys with a bag of shopping in one hand, my walking stick in the other and my umbrella clamped between my ear and shoulder I fumbled with my keys, in the rain, trying to get my unyielding hands to unlock the door. Finally in, shopping deposited, feeling tired, achy, ungainly, unlovely and low and thinking 'it's only ever going to get worse, not better' I looked up at the banisters and thought of Robin Williams. Then I thought of my lovely bed. I made it up the stairs, blundered into the bedroom and laid down, stretching tired limbs, finally comfortable, for a while at least. And then I couldn't be bothered to do anything else. And then other thoughts quickly took over. And then I forgot what I'd been thinking about anyway!
Maybe the lower suicide rate, despite a higher rate of depression amongst pwp's has something to do with a) the lack of motivation to actually get on and start anything, b) the lack of concentration and/or ability to be so easily distracted from what you were doing and c) memory (or lack of it) - you know the feeling - 'I know I came in here to do something but cannot, for the life of me, remember what it was'!!!
And maybe it's just that, despite the depression, despite the constant fight against both our own bodies and external ones, the majority of pwp's (the ones I've met anyway) tend to be a generally positive and self depreciating bunch.
"tend to be a generally positive and self Appreciating bunch."
and
I ..."know the feeling"
Maybe I am a novice with Parkinson's (dx only two years earlier" and after study on my own, decided against taking any P drugs. I can say I am expert with depression and nervous breakdown from a much earlier event in my life. My, my! You would think once in a lifetime is sufficient.
My love has had Parkinson for 26 years. Early onset, DBS, and recently placed on an increased dose of Rytary. Suicide has been on his mind a lot for many months now...what he wants to do if he no longer has control over his mind or body. We have just returned home after a week's stay at the VA hospital to titrate this and other medications. A crisis was reached a week ago when he became psychotic due to too much Rytary, insisting and afraid people were pointing guns and rifles at him and trying to kill him. Prior to being hospitalized, he told me that he had brought a gun into the house.when I asked him to give me the gun, he did. I hid it. He also said that he got a caretaker to buy a helium tank, some tubing and valves off the Internet for the purpose of killing himself if life gets too difficult. I removed the tank. We have engaged the palliative care specialists to demonstrate what that model looks like in the late stage of parkinsons and his psyche was also evaluated while in the hospital. This is a very trying time. Thankfully, the psychosis is gone for now and so are the thoughts of suicide, he says. Have any of you dealt with this before?
Hidden I submitted a report to the FDA on the delusions and psychosis at the dose and frequency that Rytary caused in my love. 4% of patients on this new drug developed these symptoms, according to the FDA website. He is able to stay on this new drug at a lower dose without adverse reactions. I would like to be clear that I do not think the suicide issues were due to the use of Rytary, rather his own wrestling with quality of life issues and what to do if that level of quality is no longer there. Personally, this was very upsetting to discover yet I am grateful we were able to involve a team of wonderful doctors at the VA who handled this in a sensitive and medically sound manner. He has returned home with a newfound vigor for living.
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