Isn't this in some way the same battle against the same prejudice that people with bi-polar have, theirs is the other end to us, too much dopamine, yet there is a physiological cause for it, and they live with huge stigma, as if it is in some way their own fault. And those prejudices are, through education, just starting to break down enough at least for aware people to understand the realities, though there is still a long way to go. But the labels are very durable and hard to dislodge. Ask anybody who has had to deal with the levels of prejudice that come with the schizophrenia label.....

PD is not a mental health disorder, it is a physiological disorder with mental health implications. That needs proper recognition in order for people to be diagnosed and treated appropriately, and with respect, not for it to be used to disempower or create a new level of discrimination. We do not need to accept any label that millions of people are fighting so hard to be free of.

And yes, it is time that the implications of the medications we take are understood and recognized too. That what PD brings us in terms of non-motor issues can be magnified by the drugs we take, and that once we are on them we cannot come off, and it becomes hard to distinguish between what is caused by PD, what is about our response to life, and what is a drug side-effect.

Of the disablement that comes with PD a fair part is to do with social factors, something that can only be cured through education and awareness.

Lindy

the reason i am so adament here is due to a horrid misdxd i went through about 10 years ago. the following was posted in mgh forum in 2000.

Ok, makin this short..... I am offically in the hospital. Came in Friday before last... Out tomorrow, so, I have limited time at this computer.
I am in the mental ward. Why? Because. When they decided I did not have pd, they decided I did have anxiety.the reason for the anxiety was due to being weaned from amatrypline which helped anxiety and put on amantadine which has anxiety as a side effect. i went into er twice panting like a dog. new neuro decides i dont have pd, instead a mental illness anxiety disorder. So, I got put onto tphese anti-phyco drugs....


effexor- 225 mg
seraquil- 125 mg
lorazapan- 4-6 mg
amytripline 100 mg

and still on sinemet cr25/100

now..

I don't know if I told you all what has happened or if I have been too zombieized to. They took me off of all my pd drugs. except sinemet.. went through huge dts.. huge. 17 years worth in some cases. tried to take me off amytripline. had me down from 100 mgs to nearly off and found out it was controlling anxiety, put me back on and upped it back up to 100 mgs. my mind and body were going nuts.

hense- the anti phsycotics. excuse the spelling. right now I don't give a rats ***. anyways, the new drugs added before I was done dting off the old made me try to commit suicide. But. That is NOT why I am in the mental ward. oh, my phyciatrist new I tried to end it. He knew and just advised I back off of the lorazapan some. that's it. but, when you are on that dose, you cannot just back off. These high doses were supposedly implemented until I was over the dts. problem was, I couldn't make it that long. THAT was not anticipated. I am in here because my last regular visit to my NEW doc the phsyciatrist- (my neurologist shook her hands of the new dxn and preffered to just deal with my sinemet until it was safe to take me off of it)had my husband carrying me into the office cuz my body was shutting down. The doc didn't know what to think, so I am in the hospital. In the mental ward...

not enough...

I get in here and am told by the following phsyciatrist here that I was going off all drugs... again.... except the sinemet...MORE DTS!!!! Now, to help me through these dts I am put on ----2200 MGS NEURONTIN !!!!!!

I finally make it to the end of those dts. Then it was time to figure out if I need the sinemet. Apparently, in their opinion, I dont.. So,, they begin to take me off... I am down to 1/4 tab of reg. 25/100 and everything, EVER"YTHING shuts down. peeing
on myself- you name it. except
... my attitude was still intact.. The phsyciatrist shakes his head and asks a different neuro to pop in... A neuro who SPECIALIZES in atypical cases such as mine. One look and he says. You are dangerously low on sinemet. You need it boosted now. Immediatly and fast. AND you need mirapex. NOW!
next day--- im walking, talking and flippin off this whole dang place.. yes, I am one ****** off biker *****.

dxn---- NON PROGRESSIVE ATYPICAL POST ENCEPHALITIC PDISM>

drugs----sinemet, mirapex...

thats all folks

sorry, but i cannot accept pd or whatever is going on with me is a mental illness. tried it, didn't like it

We are just beginning to understand in depth some portions of our brain. I'm glad about everything they learn and try to keep up - we all do. But I balk when I see the cart before the horse and that runs rampant in business.

I do see where we are hard on ourselves, but it has evolved to this point because we are passing thru this journey together. We analyze and we know where each is coming from.

To suggest that there are no consequences to just tossing mental disorder into the ring, based on little evidence yet - it's a new field of study - is not a given. There is much research to be done to draw too many conclusions now, so we have our own experiences here to share and compare and like to think that we are helping someone somewhere.

My own experience is that I'm not sure who I truly am. Such a combination of physical, mental, and medication based symptoms reflect the cocktail that I have become.

But I notice that the better you look, the more" with it" you will be perceived. You have much more control over that early on in the illness. By the time you "look" pd, and "talk like pd" you may or may not be "all there" - is how I suspect we look to others and how possibly subconciously we even end up believing ourselves.

Needless, beaucratic paperwork is right up there for causing pwp to quit work. Again, decisions made by those not actually on the job, but dictate the unrealistic paperwork.

There is also the fact that everyone is stressed out, not just pwp. The average person acquires a new medication every so many years after a certain age. Point being that there are so many ill and depressed people everywhere. With individual differences, should we all assume to be depressed with pd?

There are many adult ADD out there. PD seems to cause some of that too. I think if our motor symptoms could improve, our mental health would too. Probably from biology. but there is that unknown inner being factor that produces the placebo then also connects mind and body

The one thing there seems to be little relief for is social isolation. Maybe we become a little like autistics in self defense.

All of these possibilities or really just meanderings, are my thoughts as I go through this and they will change as the information comes out. But we are responsible for finding out close to the truth ourselves. I trust no one to completely level with us respectfully.

I don't want to be labeled anything by anybody because an unacceptable balance of persons got to write the criteria.There should be unbiased focus groups or something that involves gathering information and continue the groups.

We can't hide anything -our emotions and body impairments spill out. That's not cool. We are too often underestimated. Our speech is like a stamp that sometimes causes people to turn away when they can't hear you. But we are still there. It just doesn't look like it.

So to sum it up, we have to ask for justification and documentation and full disclosure for ourselves. The negative labels attaching themselves are adding up and new ones are around the corner. Are we just going to say..."aha, i have a mental disorder."

Cognitive skills and behavior labels need some rules of play for pd. So much of who we were first is involved.

But it would be much better if my motor symptoms were gone.

To those who argue against PD as a mental disorder:

The National Institute of Health, as well as Indigogo's website, has a wonderful web site on Mental Health diseases.

Mental Illness, from a biological standpoint, is caused by poor commmunication of neurons in the brain. To be more specific, common neurons, but not exclusively, include serotonin, dopamine, glutamate and norepinephrine.

PET scans are used to measure the amounts of these neurons in the brain. This is fact, or as one individual used the term on this site, hard science. It is not theory, or emotionally derived information. Six years ago, I was turned down for DBS, because the neurologist doing the evaluation diagnosed me as having delayed stress syndrome. I had an F-Dopa scan to prove I had PD.
I was so angry that the neurologist had diagnosed me with one of those mental health disorders. I was ignorant. Now DBS is used on extreme mental health disorders and shown to be beneficial.

The communication between the brain and Central Nervous System cannot be seperated into muscular or neurological. People with Fibromialgia have no damage to muscle tissue. But the pain they feel is very real. People with depression, anxiety, paranoia, have no observable tissue damage, but the pain is just as real. I am still ignorant but am willing to keep my mind open to proof that some of my old assumptions are based on old beliefs. I will know I am too old to learn when I refuse to allow my brain to be flexable to learn new concepts.

Vicky,

I essentially agree with the view that PD has very real mental health implications, and that some people do suffer major clinical depression due to chemical imbalances. However, I argue that PD, as a brain disorder, affects our entire system; for some, it's more obviously neuromuscular, and in experiences like Carey's, it results in more of a mental health issue. It impacts our cardiovascular health as well- dopamine is involved in modulating heart rates, so do we then say it is a Cardiovascular Disease? I don't think we can parse all that is impacted and label as distinct disorders a this point; maybe down the road, research and practice will lead in that direction.

For now, I think it better to acknowledge that the disease affects our entire being in complex and profound ways. Looking at the psychological aspects is a step forward, but no one has even begun to look at sociological aspects; that is how this disease is viewed by others and how that in turn can have very real repercussions on our quality of life. In looking at all the research generated; there is a paucity of information on YOPD, we experience things quite differently than those who have later onset. I would argue that there in fact need be an entire new subset of PD specialists, an entire new area of research that informs practice on how to treat YO people. As it stands now, we end up heading to the geriatric ward in our hospitals and I'd daresay that neurologists can't even agree on how to manage our medications let alone guide is in family planning or pregnancy, nutrition, psychology or mental health. There a few places that treat us holistically but not nearly enough.

The PET scan though yes, it does offer harder scientific proof than clinical observation is not routinely used here for diagnosis and staging of the disease. Most of us are simply handed a brochure and sent on our way. Would anyone do this with a cancer patient? No one tells them with a paper and pencil rating tool that it looks like Stage 1 and that we'll try this or that to see how the patient responds to further prove diagnosis. When will that Scan, which is more routinely used in Europe to diagnose, be routinely used here? There is no sense of urgency for us, and we know that time is just as essential for us as it is in other conditions. I would have like to have known seven years ago when I first presented with a tremor, what dopamine levels looked like for me. While there is no known neuroprotection, based on what I have learned here, I may have been better able to help myself; instead I was left in limbo with the disease moving right along its merry way. Things really need to change for us beginning with better diagnosis; I honestly could not even practice as an MDS knowing that all that I do now about how little progress has been made in our treatment.

Laura,

I absolutely agree that this is a systemic disorder, and thank you for making the distinction, and also much for bringing up two important and little recognised aspects of PD, first that it can affect our cardiovascular system, personally I have yet to see interest in this from anyone over here on a practical level. If I mention this I get told to talk to my GP...... I would love to see a whole thread on this, and on the differences between the subtypes too, that debate is far from over.

The other is how we are handled in the initial stages when we seek medical advice.

For many of us actually getting to diagnosis has presented very real problems that have impacted on our lives, and sometimes on how we feel about actually seeking help. There has been a huge throughput of people on the forums needing answers about what is wrong with them.

THEY know that something is happening to them, and that they are affected, and the professionals very often knock them back, as there is nothing that shows in any diagnostic tests. So then if they are concerned they go back again and say, but I KNOW there IS something wrong, look, I cannot do this......

A certain percentage of those people, persistent in their need to find an answer, will be in one way or another told that the problem is anxiety, depression, in their head.... some will get sent away with prescriptions for medication that treat those things, some will take them, and some will chuck them away, because they know they won't work... because they know that except for the symptoms they are having their lives would be mostly on track, and okay.

So if they ARE feeling down and not coping, it is BECAUSE of the symptoms.

I know that this is not everyone, that there are some who actually do present with PD related mental health changes that are more troubling than anything else - and of course this needs to be included, and properly recognized.

For some this process of medical denial of a systemic problem repeats itself for several years, and if you want a real reason why there is resistance to PD being classified as a mental disorder, then there you are, along of course with all the general resistance to the label anyway. Because if you are losing ability across the board, and are unable to find out why, you have no way of knowing how to help yourself, how to find others like you, how to improve your own state of being, and to be honest, if you once get that mental health label, it is likely to be the lens through which medical professionals look at you.

There is plenty on the web that defines the different classifications of mental and neurological disorders, many of them give not only a clear indication of what these are, but also define some of the factors, mainly social and environmental, that keep people with those mental health labels in positions of awful stigma and hardship. It is dark ages thinking, when what we need is new light. What is really needed is that the old labels are dropped, dismantled, and kinder, more reasoned thinking is put into place, instead of the ones that generate hate, fear and disgust. One day this thinking will be regarded as archaic and very unhelpful. We are fortunate that there are some enlightened professionals who are on our side and working with us to change perceptions.

Despite being one of the people who had to give up work due to cognitive changes, and struggling with bradyphrenia and apathy, I don't think that I could go further than accepting the systemic label that Laura suggests.

This is why; in the early days of having PD, having a lot of upheaval in my life, I was up and down, had emotional difficulties and life traumas to deal with, and a certain amount of mental turmoil. PD did not help them, and in fact contributed to making them harder to deal with. The depressive nature of PD WAS hard to deal with, like the loss of ability to multitask. (I remember going through some of the PD testing, drowsy on an anti-emetic drug I had never taken before, that is used if you are taking an apomorphine challenge test. The medic doing the testing cross-questioned me about being 'distracted' and appearing to be depressed, which of course went down on my notes........)

But PD was not the CAUSE of my mental state which was something I needed to work with anyway, it was a contributing factor to how I dealt with them. I mostly have worked on those things, and so many issues have lessened or resolved. But PD hasn't, and I know there is more to come. And that might mean a different type of mental struggle, or dementia, and if that comes then I might be willing to accept a label that defines that change......... but not until.....

For those of us who have atypical symptoms the water is even muddier.....

Apologies for the long waffle, this is something that stirs my mind up!
Lindy

Laura has an excellent point about age of onset. We all agree that pd invades both body and mind, but we don't know when or to what degree these aspects appear. Then there is sorting out the differences between symptoms and side effects.

With young onset, this becomes a big deal. They are juggling careers, homes, and family while dealing with this illness for life.

My next door neighbor and cousin [where I grew up] died young of mad cow disease. It's incredible but true. He was a cook in the army and wondered if he handled tainted foods. Once it hit, he went fast and changed from a man who always had a smile to an unrecognizable angry, paranoid, accusatory person. People with brain cancer and most other brain conditions can quickly become "different people".

With young onset pd, you are dealing with social expectations of achievement and normalcy. Pwp instead are looking strange, have strange movements, talk and walk like older people. It's like being old most of your life. This can't happen without psychological, cognitive, mental consequences.

The burning questions for me are who is experienced enough to discriminate these major differences in mental and cognitive capabilities?
When and to what degree are they occurring?
Which is it? A symptom or a side effect?

Until they are better understood, I say hold the labels.

I was diagnosed at 27 with tremor and cogwheeling. How would I have been categorized then? I have had depression. Would that throw me in a different category? My autonomous system is under attack. Is this a new category? My FDOPA scan said I was moderately severe. What does that mean in regards to what category I fall into?

More importantly, I have two mutations of my Parkin gene. Does this put me in my own category?

I have made all this information available online on Parkinson forums. I have been contacted by several researchers and have never failed to participate in any research programs that have been requested. I have given blood and skin. I have taken cognitive tests up the gazoo.

Don't complain about the lack of research done. Their are plenty of researchers who are looking for participants. The problem is patients do not learn enough about their illness (particularly the genetic factor: 40 to 50% of YOPD patients have at least one mutation of the Parkin gene: Check the Athenea Diagnostic web site if you think I lie) and patients will not ask to have their gene tested if they have to spend money or ask their health insurance to cover it.

I have been misunderstood and told I was depressed because I do not anticipate a cure in my lifetime. I am not depressed, I live with the disease, not for it. I have been told because I have PD I can understand others who have it. Obviously I don't. I don't understand why patients do not take a more active part in their health by challenging diagnosis. For 20 years I have listened to the same complaints and proposed "If only" remarks by YOPD patients. It is the drug companies fault, the doctors fault, the researchers fault. It is the Politicians or the FDA's fault. Everyone is at fault except the victim, known as the patient.

I am not a victim. I have dealt with the adversity of living with YOPD by educating myself about my illness, taking every possible test to confirm the diagnosis and putting myself out there to be found by researchers who are looking for patients with my knowledge of my illness. I also live my life pretty much the same way I would have if I wasn't diagnosed with PD. I am still a full time mom, now a Grandmother, a daughter, a homemaker, a musician and a member of a church. Primarily, I am a wife. I have had a full life and would not change any of it. Adversity is a great way to walk through fire and know you can survive if you trust your instincts. It has made me a better mother, daughter, wife, and a happier human being.

Think of using genetics to find a cure as a huge logic puzzle. You remember the kind.

Sandy took the money she received for her birthday last week and bought gifts for each member of her family. Information is provided about the color, cost and what the gift was and what members of her family she bought a gift for. Then the puzzle is solved by using the information given to state what member received what gift, the color of paper it was wrapped in and the cost of the gift.

A Parkin gene has 7 exxons. A mutation can be an additional exxon of one of the seven, or more than one additional exxon. A mutation can be a deletion of one or more exxons. It could be the deletion of one and an addition of another. This leads to hundreds of possibilities of mutations, each affecting the progression of the disease in a different way.

Most Parkinson disease patients have loss of smell. I have no loss of smell. Is it because I have no exxon 3 or 5? I wish it was so easy. It may be a mutation in a gene, other than my Parkin gene, that provides my Parkin gene with neurons needed to stimulate the olfactory senses.

The genetic code has been identified. Computer programs have been created to perform the logic puzzles of the different mutations and their affects on the gene and the interaction of genes with each other. What is needed now is enough data for the programs to solve the puzzle problems. We can't count on the government, pipelines, funding of nonprofit companies to collect and freely distribute the data. The patients have the most to win or lose by finding their personal data, and putting it out there for researchers looking for that piece of the puzzle to contact that patient and work on that piece of the puzzle. Parkinson's disease is so personal for each patient. There isn't enough money or time to solve all the logic puzzles unless each patient works hard to understand their particular piece of the genetic puzzle and add it to the data pile to be entered into the computers to analyze.

May luck or spiritual beliefs help us to live our lives fully with the adversities, whatever they may be, of living with our diagnosis'.

Inside of Me

Why do I condemn you, when you are my own
I abhor you, despise you, cannot find your home
You are my limbs that disown me whenever you desire
My brain that wont shut down when I want to retire
You disgrace me with advancing disfiguration
and allow me no doubt of your continuation
The pendulum swings when I attempt to control you
with medicinal side effects added to the brew
I stumble to find a clear path to follow
as you cover my vision with unstable tomorrows
Purposefully quivering under stress I am given
I cannot control you, and its my body you are in
At night, on my knees I pray that this ends
and ask God to show me what His will intends
He lays out His hands to nourish a soul spent
showing who I have become through your advent
The things that I had once taken for granted
are luxuries now that humilities been planted
To trade you away would change nature itself
I cant be who i am if you're put on a shelf
I will look at you now.. straight in the face
and know I will live with you.. with my Lords grace
I will wake up each morning and challenge your melee
for my vision has cleared, and I now see my way
My body may have you as a permanent guest
but you cant have my soul
That... the Lord has blessed

©Laura J Dean