There are many ideas of what Parkinson’s disease is and isn’t. Call them myths, misconceptions, ignorance – the fact remains that there are wrong ideas floating around in the minds of not only people who don’t have PD, but also people who do have PD.
For starters, Parkinson’s is no longer an ‘old’ person’s disease. It can strike anyone and has been recorded to have been identified in someone as young as two years old . Although this is extremely uncommon for someone of this age to show signs of PD, yet alone be diagnosed with this chronic disease, it is now becoming more common (relatively speaking) in the PD community for people in their late twenties to early thirties to begin showing signs of PD. Parkinson’s becomes more common with the increasing of age, with the average onset of the disease occurring between 60 and 65 and peaking at the ages of 80 to 85. According to Dr. Anthony Santiago, MD of the Barrow Neurological Center/Muhammad Ali Parkinson’s Research Center, if we all lived long enough, most of us would all end up with PD. Some of us are just more fortunate to be given the opportunity to enjoy it longer. (Sarcasm implied, of course.)
However, it should be noted that those who are diagnosed at a younger age usually don’t have to deal with the issues of their thinking processes being affected, and/or struggling with balance or walking that those who are elderly may commonly suffer with to a greater degree in a shorter amount of time. The disease in a younger person tends to progress more slowly, but the younger patients tend to experience tremors and other involuntary movements more often than that of an older person with PD.
Parkinson’s disease is known as a hidden or invisible disease, which means that often it not only goes undetected for a long while and/or its symptoms often tend to come upon the patient subtly, but it also means that to the public eye, a patient can look perfectly normal and often be (and is) challenged as to whether they actually have the disease at all. Their symptoms are ‘hidden’ because they may not have the pronounced tremor which is so often associated with Parkinson’s disease or they may be in an ‘on’ state, meaning that they are most likely well-treated at the moment.
Being well-treated or having had DBS ( Deep Brain Stimulation ), a surgery that enables the patient to lose much or all of their tremors, regain lost mobility, have better balance control, less stiffness – these breakthroughs for a PD patient does not mean the patient is cured. Nor does it mean that the disease is stalled. It means the symptoms are just that – well-treated. The disease, unfortunately, continues to progress. The tremors may have disappeared after surgery or with medication, but some Parkinson’s patients never have tremors at all. In fact, it is said that there are more than 30% of patients who experience no tremors at all. Therefore, the idea that tremors are the number one symptom in identifying PD can easily be disputed.
It has been proven, however, that even though Parkinson’s disease is not curable as yet, exercise has shown to be a key player in slowing the progression of the disease. Walking (with a partner), bicycling, swimming, Tai-Chi, dance and more are just a few types of exercise that are excellent ways to become more active and becoming increasingly more popular among those with PD.
As stated earlier, Parkinson’s disease is an invisible disease and therefore many symptoms are hidden. Stiffness (dystonia), pain in the shoulders and back, muscle cramps, loss of bladder control, difficulty swallowing, loss of smell – these are just a few symptoms that can go unnoticed by everyone else but the patient himself. This can often make getting people to understand what you’re dealing with much more difficult.
Another invisible aspect of PD is mild cognitive impairment . This includes feeling disorganized, distracted, disoriented… You find it harder to focus on one thing whereas you once felt multi-tasking was no big deal. You find it harder to complete projects. You find it difficult to make decisions, no matter how small. You forget things. You struggle with finding the words you want to say or when you have found them, they won’t come out. This is not only annoying and frustrating but for some, can cause problems in other areas such as withdrawing from people in general and becoming anti-social.
Many of those who have been diagnosed with having Parkinson’s disease often feel as if they could have prevented it and then live with guilt thinking that they somehow caused it. While PD has been proven to be connected to environmental factors and genetics, you cannot prevent yourself from getting it if merely for the reason – we don’t know what causes it. When we can come up with the answer to that problem, then we will be able to more easily work on how to cure it.
Another misconception is that Parkinson’s patients are often mad, sad, or just plain miserable. This could not be further from the truth. Parkinson’s patients have what is called a masked face or- a lack of expression. They don’t seem to smile as often as they once did or maybe not at all. This doesn’t necessarily mean they are mad or sad or – miserable. They just lack the muscle control of their facial muscles. It’s not that they don’t want to – they can’t. So, next time you see someone who looks sour or sad, don’t assume they are. They may not have any control over what their facial body language is telling you. However, as high as 75% of PD patients, to some degree, are known to struggle with depression. This is not because they are feeling sorry for themselves and sit around thinking, ‘woe is me’, but depression can be and is a considerably large part of the disease itself, often is overlooked and undertreated and another of those ‘invisible’ symptoms. Depression for anyone can be debilitating, but add it to a person dealing with a chronic disease and the situation can increasingly or suddenly become overwhelming and unmanageable on our own. It is imperative that if you are feeling anxious, in a stressful situation outside of your PD diagnosis, overwhelmed by your situation or for any other reason, notify your neurologist and get some guidance and help. It’s hard enough to deal with PD without putting depression in the works as well.
And finally, a Parkinson’s patient is often misinformed as to whether Parkinson’s disease actually causes death or not. The fact is, it does not. It can be a culprit in aiding other conditions such as pneumonia, acid reflux, choking, difficulty swallowing, etc. in producing life threatening situations, but it can’t, in and of itself, cause death. Most patients are fortunate in being able to avoid the noted conditions above and have a lifespan of 20-30 extra years living with Parkinson’s disease after their diagnosis. I don’t know about you, but that’s pretty good news to me – and that’s the truth.
Other articles you might like;
There are many ideas of what Parkinson’s disease is and isn’t. Call them myths, misconceptions, ignorance – the fact remains that there are wrong ideas floating around in the minds of not only people who don’t have PD, but also people who do have PD.
For starters, Parkinson’s is no longer an ‘old’ person’s disease. It can strike anyone and has been recorded to have been identified in someone as young as two years old . Although this is extremely uncommon for someone of this age to show signs of PD, yet alone be diagnosed with this chronic disease, it is now becoming more common (relatively speaking) in the PD community for people in their late twenties to early thirties to begin showing signs of PD. Parkinson’s becomes more common with the increasing of age, with the average onset of the disease occurring between 60 and 65 and peaking at the ages of 80 to 85. According to Dr. Anthony Santiago, MD of the Barrow Neurological Center/Muhammad Ali Parkinson’s Research Center, if we all lived long enough, most of us would all end up with PD. Some of us are just more fortunate to be given the opportunity to enjoy it longer. (Sarcasm implied, of course.)
However, it should be noted that those who are diagnosed at a younger age usually don’t have to deal with the issues of their thinking processes being affected, and/or struggling with balance or walking that those who are elderly may commonly suffer with to a greater degree in a shorter amount of time. The disease in a younger person tends to progress more slowly, but the younger patients tend to experience tremors and other involuntary movements more often than that of an older person with PD.
Parkinson’s disease is known as a hidden or invisible disease, which means that often it not only goes undetected for a long while and/or its symptoms often tend to come upon the patient subtly, but it also means that to the public eye, a patient can look perfectly normal and often be (and is) challenged as to whether they actually have the disease at all. Their symptoms are ‘hidden’ because they may not have the pronounced tremor which is so often associated with Parkinson’s disease or they may be in an ‘on’ state, meaning that they are most likely well-treated at the moment.
Being well-treated or having had DBS ( Deep Brain Stimulation ), a surgery that enables the patient to lose much or all of their tremors, regain lost mobility, have better balance control, less stiffness – these breakthroughs for a PD patient does not mean the patient is cured. Nor does it mean that the disease is stalled. It means the symptoms are just that – well-treated. The disease, unfortunately, continues to progress. The tremors may have disappeared after surgery or with medication, but some Parkinson’s patients never have tremors at all. In fact, it is said that there are more than 30% of patients who experience no tremors at all. Therefore, the idea that tremors are the number one symptom in identifying PD can easily be disputed.
It has been proven, however, that even though Parkinson’s disease is not curable as yet, exercise has shown to be a key player in slowing the progression of the disease. Walking (with a partner), bicycling, swimming, Tai-Chi, dance and more are just a few types of exercise that are excellent ways to become more active and becoming increasingly more popular among those with PD.
As stated earlier, Parkinson’s disease is an invisible disease and therefore many symptoms are hidden. Stiffness (dystonia), pain in the shoulders and back, muscle cramps, loss of bladder control, difficulty swallowing, loss of smell – these are just a few symptoms that can go unnoticed by everyone else but the patient himself. This can often make getting people to understand what you’re dealing with much more difficult.
Another invisible aspect of PD is mild cognitive impairment . This includes feeling disorganized, distracted, disoriented… You find it harder to focus on one thing whereas you once felt multi-tasking was no big deal. You find it harder to complete projects. You find it difficult to make decisions, no matter how small. You forget things. You struggle with finding the words you want to say or when you have found them, they won’t come out. This is not only annoying and frustrating but for some, can cause problems in other areas such as withdrawing from people in general and becoming anti-social.
Many of those who have been diagnosed with having Parkinson’s disease often feel as if they could have prevented it and then live with guilt thinking that they somehow caused it. While PD has been proven to be connected to environmental factors and genetics, you cannot prevent yourself from getting it if merely for the reason – we don’t know what causes it. When we can come up with the answer to that problem, then we will be able to more easily work on how to cure it.
Another misconception is that Parkinson’s patients are often mad, sad, or just plain miserable. This could not be further from the truth. Parkinson’s patients have what is called a masked face or- a lack of expression. They don’t seem to smile as often as they once did or maybe not at all. This doesn’t necessarily mean they are mad or sad or – miserable. They just lack the muscle control of their facial muscles. It’s not that they don’t want to – they can’t. So, next time you see someone who looks sour or sad, don’t assume they are. They may not have any control over what their facial body language is telling you. However, as high as 75% of PD patients, to some degree, are known to struggle with depression. This is not because they are feeling sorry for themselves and sit around thinking, ‘woe is me’, but depression can be and is a considerably large part of the disease itself, often is overlooked and undertreated and another of those ‘invisible’ symptoms. Depression for anyone can be debilitating, but add it to a person dealing with a chronic disease and the situation can increasingly or suddenly become overwhelming and unmanageable on our own. It is imperative that if you are feeling anxious, in a stressful situation outside of your PD diagnosis, overwhelmed by your situation or for any other reason, notify your neurologist and get some guidance and help. It’s hard enough to deal with PD without putting depression in the works as well.
And finally, a Parkinson’s patient is often misinformed as to whether Parkinson’s disease actually causes death or not. The fact is, it does not. It can be a culprit in aiding other conditions such as pneumonia, acid reflux, choking, difficulty swallowing, etc. in producing life threatening situations, but it can’t, in and of itself, cause death. Most patients are fortunate in being able to avoid the noted conditions above and have a lifespan of 20-30 extra years living with Parkinson’s disease after their diagnosis. I don’t know about you, but that’s pretty good news to me – and that’s the truth.
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