My boyfriend’s father has been diagnosed with Parkinson’s. They think he might have had it for a while, because he’s had the symptoms for a year or so, but it kept being chalked up to depression/anxiety/PTSD/God knows what else. (It sounds ridiculous, but apparently that’s what happened.)
Currently they’re waiting for him to be scanned with some kind of fancy machine. (I heard this all secondhand, so bear with me.) This fancy machine will scan his brain and pinpoint how far the disease has progressed, apparently. It will also show if the Parkinson’s is treatable or if it’s the kind that progresses too quickly for treatment to do much good.
My question is - are there two kinds of Parkinson’s? I’ve poked around on the internet, and I get that there are a bunch of diseases that fall under parkinsonism. Can a fancy machine scan differentiate between them all? Also all those other diseases seem to have seperate names other than Parkinson’s. Would a doctor use Parkinson’s and parkinsonism interchangeably when talking to the family?
My boyfriend’s family is in Ireland and he’s currently visiting them. I didn’t want to bug him with questions over the phone but I do want to know about this.
I can’t give you any definative answer, but I can share my father’s recent experience.
For the last year or so, he’s been becoming forgetful. Not that to the point that he doesn’t know people, but he totally loses a word. “That box thing where we keep food” for a refrigerator kind of thing.
First, the doctor thought it was Alzheimers, then a second doctor looked at him and said no way, it can’t be Alzheimers, it must be Parkinson’s. Following more more tests and a CT scan, the third doc said nope, not Parkinson’s, must be the result of some small strokes. Just last month, doctor #4, with a group speciallizing in memory, says no, it’s not Alzhiemers, not Parkinsons, not strokes, and darn, we don’t know what it is.
Listening to my mother after going through this process, it seems that there isn’t a definative way to diagnose Parkinsons.
I hope your boyfriend’s father get a definative diagnosis, and that the doctors find a treatment that works for him.
There are disorders other than Parkinson’s that present with similar movement deficits and disorders of mental function. There is no imaging study that absolutely distinguishes between them. An MRI can be done to rule out other brain disorders, and a form of PET scanning seems to be a promising avenue for confirming a diagnosis of Parkinson’s when it is clinically suspected.
Unfortunately, I am an imaging specialist, and can’t tell you much about the treatment prospects once the diagnosis is confirmed, but there’s what I can tell you.
Thanks guys. I think the most frustrating thing for everyone is not having a definitive answer for what’s wrong. I suppose we’ll have to wait for the scan results.
Actually Neur0mancer, I have a question about the scanning machine. You’re saying it’s a PET scan? Apparently the specialist said it’s a machine that there’s only one of in the country, and that there’s a waiting list to use it.
I thought PET scanners were a bit more common than that. Do you know what the specialist could have been talking about?
Well, there’s Parkinson’s Disease and there’s parkinsonism. Parkinsonism is the description for several maladies that cause Parkinson’s like symptoms including Parkinson’s Disease caused by the reduced activity of dopamine producing substantia nigra brain cells. Things like pesticide exposure can cause parkinsonism also.
My dad’s had it for almost 10 years. He was diagnosed at about 55 because he had a tremor in one arm that didn’t go away, and that he couldn’t control.
Over time, it’s become a lot more difficult for him due to lack of motor control in things like lifting his legs up to get into a car, or standing and sitting. For a while there, he was actually lucky that he was left-handed, but forced to write right, because when he couldn’t write with his right, he just switched to his left with little problem.
One thing I’ve noticed is that the medications have side-effects that are pretty severe. In Dad’s case, they alleviate his symptoms pretty effectively, but they tend to make him kind of stupid. Without them, he’s on the ball, but has a harder time of things.
Another thing that seems to happen is that he has good and bad spells, where symptoms are better or worse without any real rhyme or reason, other than fatigue tends to make a bad spell much worse. This actually is what Michael J. Fox had said as well about his symptoms. Dad doesn’t have that crazy twitching- some shaking, and more stiffness than anything.
It sucks, but I have to figure it’s better than Alzheimer’s- at least with PD, you just can’t control your body, instead of knowing you’re losing your mind.
I gotta say I think that the Alzheimer’s epidemic might be akin to the Asperger’s/autism epidemic where common behavoirs are attrubuated to one cause/syndrome.
Let me explain. I think part of the autism epidemic is doctors and experts lumping ALL kids who have some sort of social issues in with Aspergers/ autism. There ARE legit cases…don’t get me wrong.
Maybe the same sort of thing is happening with Alz… " oh they have memory loss…we’re not going to investigage further, as to a cause." Which is kind of sad b/c maybe in some cases the memory loss might be able to be treated. ( ala mystery dx on the discovery channel)
But then again, we just are second guessing as to how the body works.
I’m sorry, but I have no idea what type of scan they’re waiting for.
In terms of Parkinson’s Disease and parkinsonism, it isn’t always clear. A number of dementia syndromes have features (rigidity, tremor, etc) that are virtually indistinguishable from Parkinson’s Disease. These include, but are not limited to, mulit-infarct dementia, Lewy-Body Disease, and Progressive Supranuclear Palsy (sometimes called Steele-Richardson-something Syndrome. I can’t remember the third name). I haven’t checked, but I’d be surprised if there weren’t Wiki articles or something similar for all of these diseases.
As a rule, these Parkinson’s mimics tend not to respond well to the treatments used for the genuine Parkinson’s Disease. In fact, that can be the way the diagnosis becomes clearer.
Things can get even more confusing given that people with Parkinson’s Disease may also have dementia
As someone who has Parkinson’s, I can tell you what my neurologist has told me. Basically, the scans and other tests are to rule out any other cause for the tremors and memory impairment. My brain scan revealed nothing (I’ll tee 'em up…), but that’s typical of Parkinson’s. I was tested for heavy metals, with slightly elevated levels of Magnesium, but she thought it was probably not significant. I’m a Vietnam Veteran, and my service In-Country was a couple of years after we quit using Agent Orange, but I understand that may not make any difference. My neurologist has me on both quick-release and extended release Sinemet. She would like me to take Exelon for memory function, but I’ve tried it twice and don’t tolerate it well as either a pill or a patch.
Fatigue is definitely a factor. As I become more tired during a specific time frame I lose fine motor control (think…bladder), the tremors increase in severity, and I lose the ability to speak above a whisper. Take a nap for an hour, things improve a lot. I continue to work as a substitute teacher, but three or four days a week in the classroom means my weekend is spent recovering.
At this point, I’m open for questions regarding specifics.
Thanks so much for sharing, Harry1945. Since you indicated you were open for questions: How long ago were you diagnosed with Parkinson’s? How effective is the medicine you’re taking? How fast/severely has the disease progressed? Do you live with other family members?
You don’t have to answer anything if it makes you feel uncomfortable, obviously, and I apologize in advance. I’m probably getting ahead of myself here anyway, but depending on the diagnosis, my boyfriend and I might move to the UK so he can be closer to his father. I just want to be as well-informed as I can.
As I understand it, one of the problems with Parkinson’s is that it effects everyone differently. For about five years, I thought I had Essential Tremors. They got progressively worse, and I was diagnosed with Parkinson’s about 18 months ago. My neurologist believes in aggressive treatment, so she put me on both quick-acting and extended release carbodopa-levadopa, and unless I get really tired or emotionally stressed in some way, the tremors are slight. Presently, only my left arm and leg are effected, but that can change at some future point.
I have problems with balance, but I’ve learned to avoid making sudden moves. I have more difficulty forming coherent speech, or speaking extemporaneously, and there is going to come a time when my decision-making ability will be severely impaired. I don’t know when, though, and neither does anyone else. Ordinarily, I like surprises…
Pretty much everything you said goes for me too. I was diagnosed in July of 2008. I also am mostly affected on the left side.
For me the disease is progressing slowly. I first started noticing symptoms in May, 2007. Things haven’t really changed much since then. I do have some mental symptoms; I have trouble remembering words, and go looking for things in odd places. For instance, I need a pair of socks, so I go look in the refrigerator. Then I think, “Why the heck am I looking in the refrigerator for socks?”
I also have trouble speaking above a low mumble.
Sinemet 25/250 gives me awful cramps, but I take it anyway.
I have heard that NIH was doing a study about diagnosing Parkinson’s patients with PET scans. I got information about it at my support group meeting last year, but I haven’t heard anything more about it.
The worst problem I have is that my left hand is too stiff to type. It is exhausting to type like this. It takes forever to type a message this long, mostly because of typing dozens of characters when I only want one.
I’ll help you with any questions you have, but I have a terrible memory, and often forget things the neurologist tells me if I don’t write them down.
HNC: Where is your boyfriend’s father? There are lots of support groups around. My group has weekly exercise meetings every Friday (well the ones where it doesn’t snow). They really help keep me limber, and are a great source of information. We meet in Saint Paul’s United Methodist Church in Kensington, Maryland at 10:00 each Friday. We have a professional exercise trainer. It only costs $10/year suggested donation.
Thanks, Harry and Bewildebeest, for sharing your experiences. Both of you are in my thoughts. I guess all we can do now is wait for a more detailed diagnosis to come in after the scan.
My boyfriend’s father is in Ireland, actually. I don’t know if there’s a support group in his area but it’s definitely something to look into.
Have you considered using Speech to Text software? It will allow you to speak into a microphone and have your speech converted to text, either in a word processor document, email, text editor, message board post or whatever else.
I don’t know which is a good one to use but I have at least heard of this one before:
One of my doctors said that he tried using Dragon Speech, and found it awful. The ones I’ve looked into were also very expensive. That’s a problem because I’m unemployed, and have no health insurance. That I also have a weak voice is also a problem.
Not ridiculous at all. Nearly everyone in my support group takes anti-depressants.
According to my neurologist depression is a common symptom of Parkinson’s.
I think the most frustrating thing for everyone is not having a definitive answer for what’s wrong. I suppose we’ll have to wait for the scan results.