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By LOHENGR1N On 2013.02.06 00:14
Okay, Let's change this up a bit.......mostly I'm answering questions here. I am going to ask one for a change lol. I know there isn't any correct or right answer but I'm interested in Your thoughts, both caregiver/partners and other patients out there reading.
Do any of you think We (both patients and caregivers alike) have created a monster in the field? Several years ago some Neurologists broke to form or became Movement Disorder Specialists. As the term implies they specialize in movement and disorder of movement. With the demand for Doctors who's expertise centered on movement have We sent the wrong signal or was the signal misinterpreted? Were We thought to only or care more about movement? Is this why there is less importance placed upon personality side-effects of medication because it was helping with movement? Remember Neurologists have for the most part large student loans to repay. They wouldn't specialize in a field that doesn't get the big bucks. As for pharmaceutical companies? They monitor forums and message boards to see what a targeted group is talking about and mentioning. It only makes sense for sales you know give them what they want movement.

I wonder what you think? By becoming more selective in patients and treating movement symptoms have We created a field that has lost sight of the whole patient? I have a friend a co-worker from long ago who has P.D. we were partners on the job He's had P.D. for almost a year longer than I. Same Neurologist. We were offered the same medicines I declined many He didn't, now most of his have been discontinued He sits quietly not moving much but on those drugs (many mentioned here on the forum causing terrible side-effects) He spent around 20 years spontaneously breaking out in a form of weird Russian Folk Dance (hey I can make light of it, I'm a diagnosed prescription carrying member). In fact there was a time of me spending 10 to 15 minutes with him I could tell him what medications he was taking! but I'm digressing here. So what do you think should We suggest Get thee to a Neurologist Who treats the whole person, movement and behavioral problems? Maybe watch another sub-speciality field develop before our eyes or keep urging seeing a MDS?

In the eighties they said they could if funded have a cure in ten years now thirty years later they say the same. What has changed in those thirty years? Movement Disorder Specialists and medicine that make movement easier? But at what cost to patient, caregiver and family? You can look and read here much of the costs first hand. That cost is too high! I want a cure! Even if it comes too late to do Me any good. I don't want fellow patients heads drilled open stuck with wires and pseudo promises of movement improvement and less drugs. I don't want Newly diagnosed patients and families stunned diagnosed and turned out to fend for themselves with little or no information or false information. I don't want caregivers and children fearing the patient because of actions caused by drugs They have to take and doesn't realize what they are doing. Caregivers tears streaming down their cheeks because their husband is on a porno site or gambling away life savings. Husbands returning from work to find the paycheck has been blown on home shopping network or ebay. I want the truth told that Parkinson's Disease is a fatal disease not some chronic condition. Until the truth is out there we're going to have thirty more years of "movement improving medications" and improved ways to get those drugs into us. I want a cure nothing less.
Sorry this kind of turned into a ranting vent.

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By dkleinert On 2013.02.06 01:01
THANK YOU sooo much for writing this! I could not agree with you more. My PD husband goes to a 'Movement Disorder Clinic" at Duke. He sees a Neurologist - however - the questions he is asked every visit are ALL geared to his movement or lack there of and nothing else. He is a kind man, and I like him, however, he just treats the movement issues. He won't talk about anything else. Everytime I bring up another issue brought on by PD, he sends us to another specialist.....it is maddening to say the least. Now, based on what you have told us in your great post, this has been a disease that is all about the obvious issues of movement and all of the rest - traumatizing side effects - are not important. The only thing I can say to that is that most of the docs we have been to don't really pay much attention to side effects - they seem to acknowledge that they exist, and basically say take the meds and live with the side effects or live without the drugs and live that way....our choice. No word about "cure", the "latest in treatment discoveries" - nothing moving in that direction. Once I brought up adult autologuous stem cell treatment to the Neuro, and he looked at me like I had two heads and 10 pairs of eyes. The only thing he said is "not a proven treatment". I brought several research studies I had printed with the results, however he was not interested - I just could not engage him to even give an opinion.... YOU are so right as always.....your perspective explains a lot to me. What can we do to change it????? Any suggestions, Lohengrin??? I will do anything, really!

By jcoff012 On 2013.02.06 09:26
Well, now I see that maybe my husband was correct in NOT taking a lot of meds...he watched how his mother reacted to the addition of each new med, and he told me at the start, "I am going to refuse meds as long as I can and will take them at the lowest dose for as long as I can."

What is the result of his self imposed boycott? (He is only takes five pills a day) Well, he has many symptoms and many problems, he is slowing down, has a lot of pain, shuffles, drools, etc...but he does NOT have hallucinations, odd ocd problems, etc....and I am sure it is because he isn't over medicated.

Has PD effected him in a lot of ways? Of course, but told me just the other night that he would put up with the tremors, pains, slowness rather than be a "walking pharmacy"...

We'll see...I defer to those of you with PWP for a longer duration...but, remember, any change to treatments effects us all. Jane

By Jane On 2013.02.06 10:58
Lohengrin,

You are absolutely correct. After reading your words I feel energized to raise the issue with the neuro at the next appointment. Thank you.

By Knoosy On 2013.02.06 13:52
Al, you ask a very good and complex question. I have so many thoughts on it that I don't know where to begin.

Maybe, that I don't think that we the caregivers and patients created the monster. The monster was rather created by our health care system and the educational system at the med schools. Sadly, this society is controlled by economic motivators and business decisions rather than ethical, moral and humane causes.
Doctors follow protocol hand in hand with big pharma and have to make a living. Curing a patient is not as profitable as managed care of symptoms. I once went to a doctor for a check up whose waiting room was almost empty. He was a research scientists and developed fascinating cures. He told me that his objective was to cure people so that they would not have to return to the doctor.
We spoke at length and he shared one of his simple cures which I use successfully and share with other people.
He also said that the medical community looks down on him because he actually cures people and builds up their confidence in their own healing power and ability versus making them dependent on doctors and medication.
It's not good business...

Med students may start med school with the best intentions to help and heal people but once they are through the med school propaganda machine and faced with reality of paying back big student loans they too become pill pushers who spent little time with their patients and may even lose some of the initial spirit of being healers.
The holistic approach is not encouraged and even frowned upon in conventional western medicine.

Ancient medicine like chinese medicine had a much deeper understanding of how the mind, emotions and body are all connected and need to be treated together as supposed to isolating the body and merely focusing on that as it is done by western medicine.
It may take time until our medical system starts to add consciousness, emotions, the sub-conscious mind, psychology, the soul, traumatic events and experiences to the equation in finding the cause of dis-ease in order to actually cure it. All dis-ease starts with a dis-ease of the soul or to not sound too spiritual, a disharmony created by something we experienced and haven't processed and brought back into harmony yet. You have to learn to understand what the soul or your sub-conscious is trying to tell you, where is the pain coming from that is making your body sick?
Emotions play a huge role in dis-ease. Why do some people who have faulty genes and/or have been exposed to toxins get sick and some don't? There is usually an underlying emotional trauma and wound that leads to physical dis-ease if not addressed.

Once you know the cause, you can cure. By only looking at motor symptoms and dabbling with the physical, a real cure can not be accomplished. Only a suppression and control of symptoms. Life can be prolonged, but the underlying cause that could be detected in the sub conscious remains.
By working with psychologists, and addressing emotions and the sub-conscious, a lot could be achieved in terms of cure, but psychologists today also just tend to prescribe pills instead of searching for and treating a potential emotional cause and connection of the dis-ease.

Which brings us to your question about behavior. If you ponder on that, you may realize that behavior is also a symptom that arises from an underlying cause. It can be caused by chemicals from medication but if behavior is off without medication and that includes cognitive issues, there is usually another deeper cause present.

So as long as doctors only focus on motor symptoms and behavior and try to fix these without looking at all the other aspects that make a human whole such as consciousness, mind, emotions and body, they will have a limited success in curing people.
Our doctors don't want to hear about any alternative holistic approach because they like to do their business as they were taught in med school. They don't have courses on human consciousness or the relationship between emotions, trauma and disease. At least not the last time I checked. Med schools don't encourage holistic healing and there is a silly competition between conventional and alternative medicine instead of beneficial teamwork between the two.

It's not a hopeless situation for patients and caregivers. I encourage everyone to do self-inquiry, meditation, therapy, group therapy, even past life regression if you're open to it, practice prayer, seek alternative healing methods to clear old wounds and blockages and be more actively involved in self healing other than putting all your hope in your doctors. Group healing can be beneficial because people can compare notes and discover causes of dis-ease together.

It's all out there when you look for it. But be smart and don't fall for any quacks.
I hope this helps to answer your question. All the best wishes to Al and All. :)

By jcoff012 On 2013.02.06 15:59
[deleted]

By Knoosy On 2013.02.06 16:25
No, I'm not saying that disease is caused by something someone does to himself. First of all everything that triggers feelings of guilt and blame should be avoided.

Dis-ease can have many causes. My point is that conventional medicine is not too concerned with really understanding the cause. It may go as far as studying the cause on the mere physical level such as toxic exposure, genetic markers, viral infection, life-style.

The cause is usually more complex than that and as I mention just a fraction of possible causes to be explored it shows you why doctors rather make it simple and focus on the physical level only. It could be a combination of a physical pre disposition together with the fact that a person neglected their true calling and suppressed their emotional needs, or that someone lives a life as a victim always doing for others and putting themselves last, experienced trauma and abuse and never processed that and instead repressed the experience. Contributing factors could be suppressed feelings of fear, guilt, anger, sadness, as well as a blow to the head during sports in childhood, ect. as underlying cause that led to manifestation of dis-ease. It could be that a person's immune system is weak due to physical, mental and/or emotional imbalances or suffering. There is no one answer, and usually the cause goes deeper than what can be determined or explained on the physical level. Just as Al said that we need a holistic approach in figuring out the cause and a holistic approach to heal. As long as you dwell on the physical only, you will not get very far. Even if a disease is cured, if the underlying cause remains, it may manifest as another dis-ease.

An open mind is necessary, and patience to do healing work not only on the physical level. Maybe you've heard of people suddenly going into cancer remission or getting healthy even though doctors gave up on them.
Often these people realized some habitual pattern in thinking, feeling or doing things in their life and after dissolving that a disease causing blockage is cleared and leads to overall healing.

I would need more time to expand on that so that misconceptions are avoided. I'm just touching on different areas briefly to hopefully inspire or spark some interest to explore healing beyond taking with doctors no matter how caring and understanding they are, taking pills and undergoing surgery. Healing takes active effort. Many people don't like to hear that. They like to hand the responsibility over to the doctor and expect a miracle without their active involvement and before you start boiling from what you read, I'm drawing on personal experience just like you and everyone should have a right to their experience. You can believe whatever you choose to. I'm just sharing what I experienced and studied.

I didn't said that dis-ease is a person's own doing even though it can be. I have had a very serious illness stage 4 myself and recovered because I was open to other ways of healing, looking within, making changes, believing in a higher power and received help in that. It worked.
When I was at the hospital, I heard of a guy who had the same dis- ease as I had and suddenly recovered almost miraculously.
He was a law student who was so unhappy about studying law due to his parents insisting until he got very sick. Once he dropped law and was able to do what he was really passionate about, he got healthy.

What I say may trigger resistance in some because it requires a lot of openness and going beyond what we are being told by conventional medicine and the main stream believe system. I hope I do not offend anyone. And yes cancer can be a result of unresolved issues. Absolutely. I would recommend reading anything by Louise L. Hay. She cured herself from a serious cancer through understanding the underlying cause and addressing it.

Maybe you are a bit harsh in cutting of a friend because she has a different opinion and experience than you. I believe that there is some truth to what she said to you.
I have a friend who was in cancer research, very bright with a PHD. He told me that he witnessed how cancer CURES are being suppressed. Thereafter he quit the business and became an alternative healer because he truly cares about helping people and does not want to be a supporter of the big pharma industry.
Just look at their yearly profits. It's a huge industry. Every time money plays a big role like this, you will find corruption. That said, you are blessed to have found good and caring doctors. They do exist, but maybe it wouldn't hurt to go beyond what you already know and accept as truth if you truly wish to find a cure.

By LOHENGR1N On 2013.02.06 16:28
Well quite the different answer from last nights post and un-post. Although I will have to disagree knoosy. Sometimes a cigar is just a cigar and a disease is not a dis-ease. I don't have Parkinson's Disease because my parents wouldn't let me stay up late and watch TV when I was a lad. Which I know is over simplifying what you're saying but you get my point as clearly as I see yours.

Yes there is silly competition between the two schools of medicine alternative and conventional. Both are stiff necked and their way is right while everyone else is wrong. But I won't enter the debate now. That will get us nowhere and I'm concerned with now-here. I'm suggesting that maybe We have given the impression We want only movement, easier and more normal and damn the emotional and behavioral side-effects of the drugs, which we all know need to be balanced out. I had not intended to open a forum upon which patients struggling daily with their caregivers to combat Parkinson's disease with the tools they have and need to have faith in, along with their doctors, to be told they don't need that medicine and most of their trouble is deep seated and suppressed in their head from old trauma is in my mind unconscionable. To suggest a talk with their doctor about side-effects or tweaking medicine is one form of helping. I know you are longing to help, many here are on limited income facing the end of life issues scared but hopeful. And being hopeful isn't a bad thing, if We travel without hope all the self-actualizing in the world along with introspective self-examination is for nought. And I think all will agree we don't have to boil the struggle between alternative and traditional medicine down to the forum. Which if You think about it both could co-exist in harmony if both would concede their are not wholly right. Both have positive points.

As an add on lest it is misinterpreted any infrence to holistic is to treat the side-effects caused by the drugs on emotional and compulsive issues along with movement. Not any need to sit down and ponder what We might have supressed and is causing our Parkinson's or other diseases (also there is no hyphen in my world in that word)

By Knoosy On 2013.02.06 16:56
Al, you are seriously limiting yourself if you believe that the sub-consciouss, consciousness, soul, mind and emotions are unrelated to the manifestation of dis-ease. It is very important to have a discussion of conventional and alternative medicine and share experiences especially in regards to holistic. It is not about wrong or right. The problem starts each time people feel defensive and the egos clash.
Not necessary we all want relieve not complications due to egos. Sometimes curiosity and humility is required to learn, study, improve. Even though this forum is filled with bright, intelligent, experienced and caring people, no none needs to take a position of I'm right and the other is wrong. Like you said they all have positive points and they all need consideration in order to find a holistic cure. Never said that side effects should be treated by exploring emotions. You alter my post to make it sound like non sense.

By jcoff012 On 2013.02.06 17:25
[deleted]

By Knoosy On 2013.02.06 20:19
No assumption, judgement or diagnosis was made by me about you and your family. I am sorry if it came across that way.

I listed a few of many possible causes of dis-ease from a more complex and let's call it holistic view than just the physical level.
You seem to be taking things too personally. I do not write these posts to hurt anyone.
I'm not trying to compete with anyone about belief systems. Rather just suggesting opening up to more than one already thinks to know.
I hope I will keep an open mind to learn even when I'm old. I could never say that I know it all ignoring other ideas, experiences and theories.

Doing all for his health as you describe your husband is all well and true for you, but maybe alternative medicine means more than herbs and acupuncture. It means to look at humans in a much more holistic way and also include the mind, spirit and soul.
I can't imagine that you would not agree that emotions can contribute to or cause disease. There is much information out there on how depression can damage the heart, how people who do what they love live much longer and so much more...

Is doing everything to heal the body with pills, herbs and exercise with a conviction that the emotions and the soul don't play any role in dis-ease really doing everything? Please don't misunderstand this. I feel that all of us here are already doing more than is humanly possible. Including the emotional and spiritual aspect in healing doesn't necessarily mean more work. It can be pleasant, hard at times when facing oneself on a deep level, very empowering and actually healing.

Existence is so complex that we cannot really understand why things are happening to us or our loved ones but to reduce them to seeking the cause of dis-ease in the physical aspect of being appears to be a very limited approach. It may be helpful to comprehend a human being to be comprised of several levels: the physical, mental, emotional, psychological and spiritual. All of which can be causes of or contributors to dis-ease if out of harmony or neglected. There is plenty of scientific evidence of a mind body connection. It can't be ignored anymore.
Spiritual healing exists, energy healing works, think of Reiki. It's an accepted form of hands on spiritual healing legitimately practiced in hospitals and studied extensively. We are only beginning to understand that we are more than the body.

When I mentioned feelings and non sense it was addressed to Al and not you.

"It is the mark of an educated mind to be able to entertain a thought without accepting it" - Aristotle

By dkleinert On 2013.02.06 22:02
I am saddened to read the posts that resulted from Lohengrin's great conversation stimulating initial post. I have been on this forum for 8+ years now, and it has always been a safe place to post whatever one needed to post whether it be a question, a cry for help, an observation or a piece of information we wanted to share in case it might help someone. There has rarely been antagonistic interchange (yes I can think of a couple instances, however, rare).

We are all seeking a CURE for PD. How we each find it is personal to our situation and life experience.

I personally value Lohengrin's input. He is my hero and such a brave soul to be so vulnerable to all of us - letting us see from the inside out what our dear husbands and loved ones with PD may not want to share or be able to verbalize. I value every post he makes and will always listen to his wisdom - after all, he has lived with all the many sides of the "elephant" for 22+ years (or more, right, Al). Can any of you say that? And he is still here to talk about it with eloquence and unselfish, unembarassed detail.

Let's keep this place a safe place to air our thoughts, and not be offended or take personal offense if someone has a differing opinion or point of view.

As one of the wise instructors I value says "Take what is useful for you and leave the rest". He says that at the end of every training class.

By LOHENGR1N On 2013.02.07 00:15
You know knoosy you can take all the shots at me you want to as "D' say's I've lived with P.D. for over 22+ years, as a matter of fact I'll be entering my 28th year soon of living with P.D. I hope You and your loved one will be able to say the same sometime years from now. I'd like to hear your speeches then. It always puts a smile on my face when talk of limiting oneself, educated minds, intelligent people are open to new ideas. Well it also seems educated minds and intelligent people aren't open to anything that stands in the face of any of their ideas. Then a form of pseudo snobbery emerges. Casting doubt upon ones openness or willingness to hear out other ideas. If they don't go along with yours. Yet you can voice and try to bully or force yours on others? I didn alter your post and make it look like non sense, you wrote it if you think it looks like non sense go to the mirror and be mad at yourself. You joined this forum at the end of December last year at a loss, remember? You were very happy to get advice to help you and your Boyfriend facing problems and looming operations. People here regardless of how much you want to deny it you attacked, reached out and helped you. You knew nothing about this disease, treatment or procedures We all answered your questions as best We could. And this is how you act in return? The post you deleted last night was nothing less than a temper tantrum which you must have realized when you read what you wrote hence you deleted it. Now you're telling everyone how to live with this disease? What we need to do? Evidently there is something lacking in that knowledge and those teachings or who taught you, else you wouldn't have sought out the forum for help. We don't have all the answers but then neither do you. we know that. I wonder if you do? In closing I'll give you a bit more to fire shots at me for. If anyone needs to sit and reflect on how to live and why they act as they do it is you. Do yourself a favor and find out why you take such offence at view points that differ from yours and think it is okay to reject others regardless. Is this what your teachings instruct you to do? Try to force others to agree? That is subjection and not liberation of mind, body or soul.

By jcoff012 On 2013.02.07 09:34
Yes, I deleted my responses to Knoosy's posts, but for ONLY one reason...I was angry, not uninformed. But it does no one good to rant on this board. I apologize for yesterday.

Al is correct in his last post, but I decided last evening that I was NOT going to have my posts be the ones that either upset or discourage others. I am a very positive person on most days, but with a daughter who just spent five days, when expected to stay one gravely ill in the hospital, and a son who is bravely fighting testicular cancer, the above posts pushed me way too far. So, I decided that the best thing I could do for the forum was to remove my responses and leave.

However, I have found many good friends here and I choose to stay to help encourage others and to support them as best I can. I will not fight with you, Knoosy.

Thank you friends, for your kind emails. I appreciate your struggles with PD and know you are loved in return. I'm BAAAACCCKKK!
Hugs and love, Jane

By chroop67 On 2013.02.07 12:43
WOW! I always find it interesting what goes on on this board. I have felt both supported and let-down on this board. I love that AL lends us his view from the other side, even if at times I find your words self-serving(no offence intended AL). I just wish that all posts would be embraced here. If you choose to adhere to traditional medicine, so be it. But life is not simple and neither are the complications that go along with living it, whether it be disease or hardship. What is wrong with the exploration of all possible treatments for illness, as long as they are not complete quackery (which needs to be self-determined). Science readily accepts that stress has a direct negative impact on health, so why wouldn't things that help us deal with stress improve our health.
I personally believe that my mom's PD is a direct result of untreated Celiac disease, which untreated manifests in neurological illness.
Its funny that alternative medicine used to be traditional medicine and now traditional is all about pharmaceuticals.
I don't want to incite further arguments here just want us all to accept each others opinions. You do what works for you and I will do what works for me. There are no right or wrongs here. We are just a bunch of people thrust together by a really shitty disease.
Let us all agree to disagree:)

By jcoff012 On 2013.02.07 13:02
Ch, I appreciate you thoughts. "We agree to disagree." Lol Where'd I hear that before? Hugs.

By parkinit On 2013.02.07 13:11
To get back to the initial posting message or thought-provoking comment so we can all learn and grow and discuss intelligently...

We were going to a "movement disorder specialist" who helped my husband ambulate at all costs - which resulted in a subdural hematoma from repetitive falling (15 times over a two day period after a "tweak" on his DBS). We go to a neurologist now. This is the cost, Al, for us.

I would like to say the following. This is
what would I want in the "perfect package" doctor:

1. One who listens to the patient AND caregiver.

2. One who is aware of the side effects of drugs and asks at each session if patient or spouse note any side effects of taken drugs. If there are side effects, offer alternate drugs or at least say, "I have no more drugs to offer and this one is not working for you." I can accept that.

3. Talk about and stress how important a good diet is. Yes, PWP frequently have dementia, so you might need to remind him/her about the importance of not eating meat around pill time and, in fact, reducing the amount of protein consumed, if necessary.

4. Be open to alternative options and assist patient in monitoring those alternative options. Let's face it, we may be desperately seeking out other options that the doctor doesn't or wouldn't normally support "because they haven't been clinically tested and approved by the FDA." My spouse and I are at points where we are willing to test things without the FDA approval first. We don't have the luxury of time.

5. Be aware of the cognitive impacts of the disease and by drugs and take frequent cognitive tests, not just when a spouse brings up issues of memory, which can be a touchy subject if the spouse brings it up in front of the doctor.

6. Ask pointed questions: How are you walking? What can I do to assist you? Do you need a walker? Should we get you a wheelchair? Have you adjusted your pills? Are you willing to try something different? Are you taking more pills sometimes throughout the day than what you normally take on a given day (red flag)? Are you visiting porn sites? Do you gamble? It's okay to tell PWP that they should shy away from these things even if they did it before because they can become addicted to it at great loss to them (money, family, etc.). Every d*** doctor we have had pussyfoots around this issue of addictive and/or obsessive/compulsive issues.

7. Talk about other therapies that may benefit - reflexology and leg massages with essential oils for the swelling and feet issues, body massages for stiffness and back issues that go along with PD.

I'm sure there are many others, but this is my dream doctor and I've yet to find him.

By LOHENGR1N On 2013.02.07 15:46
Great posting Parkinit! Good list. Too bad You're not in my area I'd give you the name of my Neurologist He's pretty close to that list. When you find that Doctor please let us know We'll be flocking to his office! All great points you've brought up. While there are some good ones out there they seem to be too few. Maybe our Med Student posting on the forum can pass that info on to help teach Neurologists now studying to be aware and more open to the suggestions you give? Thanks for that post it gives Us some good food for thought and avenues to explore with our Neurologists! Take care, best of luck and hang in there

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By dans316 On 2013.02.08 10:41
When I was diagnosed with Diabetes, one of the first things my doctor did was send me to a Diabetes Education Class. It sure would be nice if there was such a thing as that for PD, and if it would be covered by insurance as the Diabetes Education was.

When my wife was dx'd with PD in 2006, other than questioning the neurologist, the internet was and still remains our best source of info.

By jcoff012 On 2013.02.08 11:44
Dans, THANK you. I asked my husband's neuro that very thing...why no classes/help for PWP? He said, and I quote, "There is no need. You will learn as you go." ???

By LOHENGR1N On 2013.02.08 14:58
dans, that's another great idea! One that would help a lot!

By LotsaBob On 2013.02.08 16:30
What type of info would be explained in a class? I don't understand.

By jcoff012 On 2013.02.08 19:13
Lotsa, my Dad went to the Diabetes classes after his dx. They were informative, run by the hospital, and covered foods, insulin dosage, etc...We are suggesting that a class on PD would be a great idea after dx...

I would suggest one on symptoms, medicines, what to expect in the future, when to quit driving, how to encourage the PWP to exercise and suggest some exercises, a pamphlet or list of resources...and even names of good neuros and/or other specialists. I would suggest that they be attended by and with the PWD by the caregiver. I would have classes for the caregivers, too...on preparing for the future, have to contact local PD organizations, support group information, a list of questions to ask the doctor, how to prepare a talk with young children, DNRs, end of life discussions, etc...

I have been thinking about this a lot, ever since my husband was first dx. We all seem to be our own doctors...I mean that in the most humbling way...we don't WANT to be, but there doesn't seem to be that many good doctors available...the information we need is out there, but there is no one who has put it all together and GIVEN it to those who need it most...hence these boards.

But, for some of us, this is HIGHLY frustrating...my husband likes his neuro, but I don't. To me, he either doesn't have the knowledge or simply doesn't bother unless my husband calls him...sad.

By olpilot On 2013.02.08 20:33
I believe that movement disorder specialists are far to narrow in the dx of pd. I am the pwp and my wife, my care giver, and I were very frustrated before my dx. There were so many things, so small, some not so small, but the movement spec. never looked at any of that, just the way I moved. The head of neurology at the state university thought it maybe pd, because of the totality of things. It took 2 more years to finally get sinemet to see if it would help, it was an amazing difference. we were pretty sure it was pd, there are only so many things they can tell you you have related to pd, and they say well it doesn't mean you have pd, that you might really have pd. It is sooo important to look at the symptoms in total, not just how we move. I don't have a visible tremor, many don't so it is so important to look at the whole person and a movement spec doesn't necessarily do tha.

By Reflection On 2013.02.10 17:38
Dear Al - thank you for your perceptive and thought provoking question. I hope you and Tess are enjoying the snow - at least, to look out, if not to frolic in.
Indeed, I believe the focus on "movement" is much too limited. I think it's because of several reasons. "Movement" may be easier to diagnose, and easier to treat - it does tend to respond to Parkinson's medications. Doctors like to be effective- and they can treat movement.
When my husband was in the depth of his medication-induced mania, I asked his movement disorders specialist (major city, major center) what he would do if a patient exhibited personality changes, etc. The Movement Disorder specialist said he would refer that patient to a psychiatrist. At that point, my husband had been seeing a psychiatrist weekly for a couple of years. The two doctors did not even coordinate medications; neither dealt with what in retrospect was egregious over medication.
What would I do?
First, I'd require tests that might detect impulse control disorders. Weekly Liver enzyme tests are required for certain useful medications that might for some cause liver problems - why aren't impulse control tests required for folks taking requip/mirapex/neupro? Or at least, folks taking more than X dose.
I can imagine a rotating series of tasks done on via internet, at least monthly. I believe neuropsych tests that check for impulse control exist, and should be easily translatable to an internet version.

I'd also require caregiver and the person with parkinson's to fill out behavioral checklists - probably, again, on the internet. If either indicated an issue, perhaps a nurse or physicians assistant could contact the family, find out more.

In general, I'd make far more use of medical personnel - nurses, physician assistants, etc. that specialize in PD, and far more use of internet, standardized monitoring. Something like "Patients Like Me" is a good start - but I'd add in tests one could take, track changes over time of various skills - impulse control, visual/spacial issues, etc. That could provide objective help in identifying issues (eg driving, medication issues, constipation, maybe even infections that cause sudden deterioration) - that could then be followed up with.

By LOHENGR1N On 2013.02.10 18:52
Great thoughts and well made points from the voice of experience! Thanks Reflection. FYI, Tess is frolicking....She seems to think I should be out in the deep stuff with her maybe making snow angels, I'm declining so far.

By Reflection On 2013.02.11 08:43
Al - stick to your guns! No snow angels! Seriously, I suspect it is very icy out there, so be careful, and give Tess a pat for all of us.

By karolinakitty On 2013.02.12 11:01
I sure miss your postings AL good friend.....
Movement or Neuro.... from personal experience I think for an original diagnosis, the movement specialist is the key. But keeping on track throughoutthe disease, a neuro who you can communicate with openly and let them understand that you know your body, works better. If you have an issue your Neuro can't explain....see the movement doc again.....once you are in the specialists books you are a patient...use them when necessary.....

As to the response on "classes on PD"...having our own foundation puts me in touch with some interesting and knowledgable folks...I apporached our local hospital about classes and the response i got was mind blowing...It is not as common as other diseases.

Apparently they haven't been in our world eh????

Speaking with several neuroscientists and Movement specialists and discussing this issue, I understand the why nots....You need someone certified to speak on the disease. Not every hospital has the luxury of such a person. It could be an NLPN, a Neurological licensed practicing nurse, and these are not very common but are there. The degree with what would have to be taught is way out there since everyone is so different in this disease. I am not saying it can't be done, neither were they, just saying it would a long period of teaching and heck, we are only in this 5 years and still learning...so how long would a class last...every week for the rest of your life in reality.
The basics are out there. Heck, not even neurologist and specialist agree on everything out there. Is there pain with PD? some think not...can you die from PD??? some think not...Why we had one client who told us that her PCP told her that YOPD really doesn't exist, that it is so rare that ONLY Michael J Fox has it..what??????? and this is a professional?????? Apparently he doesn't know that the % of YOPD in the UK is higher than the others....So if the medical community can not agree on what is real and what isn't then WHO can teach it....we all may be involved in the daily knowings but who of us is certified to teach it?????

By LOHENGR1N On 2013.02.12 15:42
KK!, Who is certified to teach it? Come on now. You know from personal experience many "certified" People don't know squat about it. Just what they were taught from a book (course) for the certification. Where would Jim be now if you had taken the word of all those "certified" and "Degreed Professionals" and not listened to His and Your intuition? Take care, best of luck and hang in there.

By parkinit On 2013.02.12 18:19
Very good points, Reflection. This is great dialogue. Thanks for starting, Al.

By Jane On 2013.02.14 11:54
It has been several days since Knoosy posted her views on holistic healing, but I hust have to respond. Five years ago my daughter died of Cancer. Reading your post brings back painfull memories of her fight to live. During that time she tried some visual imagery along with her chemo and radiation. While she was going through this, a co-worker's wife was dealing with breast cancer. My co-workers wife also was using mediation and imergy. My daughter died and my co-worker's wife is still alive. Believe me, very often I think of what I could have done differently to prevent my daughter from getting cancer and dying from it. Did my co-worker's wife succeed and my daughter and I fail? I just don't know. I'm sorry I just had to get rid of these feelings that were evoked with your post.

By jcoff012 On 2013.02.14 12:14
Jane, as someone who has had cancer, please believe me that you did nothing but bring life and love to your daughter. I don't blame my Mom, or anyone, for the cancer...I lived through my years of treatments, but years ago my brother did not. No one knows why. Or, why does my son have it? Too many unanswered questions...

But, you and she, know you did your best. Life is like that. Please vent if you need to, but know that there are some things over which we have no control. All we can do is do our best. Please, please let your heart be at ease, knowing you gave her what she needed most..a loving Mom...anyone reading your post can feel your pain...

On this day, Valentine's Day, may you find peace. Hugs, Jane

By Knoosy On 2013.02.17 14:38
The one who is taking offense and is firing shots is you Al. I made it very clear that I wasn't trying to change anyone's opinions, truth or experience nor did I try to offend anyone. I raised some very valid issues that are being shut down on this forum. Well it's clear that you Al do and want to run the show here. Go ahead. Make yourself the judge and know it all. I never wanted to challenge you. You're totally misunderstood all that I proposed and I will not post on here anymore since I felt booted by you and the hostility is not nice. Wishing you the cure you hope for, all the strength in the world and most importantly PEACE!

By jcoff012 On 2013.02.17 18:31
If you are really off the board, you will not see my response, but *I* took great offense at your posts and removed my angry responses.

Al does not need me to defend him. He has lived with this damn disease for years and has selflessly offered answers to our questions. I value his friendship. I don't consider him to be a know it all, just a "I know what it's like", and I value that insight.

To anyone else on these boards, hugs and love, Jane

By Knoosy On 2013.02.18 16:30
Even though I said I would not post here anymore I decided to post ONE LAST reply to set things straight as Al has continuously misinterpreted my posts. Anyone feel free and go back to read the posts.

Al:
You knew nothing about this disease, treatment or procedures.

My response:
Wrong assumption Al. I have been in my friend's with PD life since 2007. I have walked this path with him with all the good and the bad and know quite a bit about this disease. Surely not as much as you, but to say I know nothing seems a bit contrived and arrogant.

Al:

We don't have all the answers but then neither do you.

Me:
I never claimed I had all the answers nor did my suggestions contradict or question any of yours.

Al:
If anyone needs to sit and reflect on how to live and why they act as they do it is you. Do yourself a favor and find out why you take such offence at view points that differ from yours and think it is okay to reject others regardless.

Me: Sorry, but nowhere in my posts have I taken offense with anyone's views nor have I rejected any of them. I had to go back and reiterate that I am proposing additional levels to be explored and included. I never criticized anyone's views. Al, it appears that you are projecting your own behavior on me as you seem to be the one who throughout this thread responded to me critically taking offense with different viewpoints. To be even more clear, my viewpoints are not different, rather more encompassing.

In closing. Al seems to be the judging and correcting force on this forum with lots of caring, grateful and loving followers. Again PLEASE DON'T SAY I TAKE ANY OFFENSE. I DON'T. I hope that was clear enough. I wish you all the best in your support group.

I had to post one more time because there is a chance that many people who deal with PD and other diseases including cognitive decline read this forum to get information without ever posting on here.

So for those who are open minded to additional ideas that go beyond the physical and want to explore on an even deeper level, I would recommend the books posted below.

The freeze effect is a major symptom in people with Parkinson's which may have a connection to previous events and experiences in life. There is a possible relationship to life events and cognitive decline at old age. This is no new age holistic quackery. Anything proposed that goes beyond mainstream conventional medicine and suggests that the medical profession operates from a limited point of view seems to be enraging some ppl on this forum. The books below are based on scientific research.

Please Al, no need to add your two cents. Let everyone decide for themselves if they want to look into an extended body/mind/emotions/spirituality connection beyond the physical only. When balance is restored, illness leaves. And for the lady who lost your daughter, I'm very sorry about that, but please do not blame yourself. It was not your fault.
We rarely comprehend why things happen and to whom. If you believe in the soul and a possible afterlife, things can be seen in a new and comforting light.

1. Peter Levine PhD. In an Unspoken Voice: How the Body Releases Trauma and Restores Goodness
**Unraveling Trauma in the Body, Brain and Mindóa Revolution in Treatment**

In this culmination of his lifeís work, Peter A. Levine draws on his broad experience as a clinician, a student of comparative brain research, a stress scientist and a keen observer of the naturalistic animal world to explain the nature and transformation of trauma in the body, brain and psyche. In an Unspoken Voice is based on the idea that trauma is neither a disease nor a disorder, but rather an injury caused by fright, helplessness and loss that can be healed by engaging our innate capacity to self-regulate high states of arousal and intense emotions. Enriched with a coherent theoretical framework and compelling case examples, the book elegantly blends the latest findings in biology, neuroscience and body-oriented psychotherapy to show that when we bring together animal instinct and reason, we can become more whole human beings.

2. Peter Levine. Body, Breath, and Consciousness: A Somatics Anthology:

The forces that develop the selfósomatic, emotional, mental, interpersonal, social, and spiritualómust all be considered by therapists in treating any patient. Each article in this important anthology deals in some way with these various elements. The writing is focused on the body-mind connection, exploring the practices and theories of this popular branch of psychology. Topics include the significance of family systems; dealing with trauma and shock in therapy; and the importance of breathing, offering valuable insights for the student and practitioner alike. Contributors include Marianne Bentzen, a trainer in Somatic Developmental Psychology; Peter Bernhardt, a professor of psychology; and Peter A. Levine, author of Waking the Tiger.

3. Louise L. Hay. Heal Your Body A-Z: The Mental Causes for Physical Illness and the Way to Overcome Them

This is a fresh and easy step-by-step guide, set up in an A-Z format. Just look up your specific health challenge and you will find the probable cause for this health issue, as well as the information you need to overcome it by creating a new thought pattern.

By jcoff012 On 2013.02.18 19:31
I just spent HOURS reading passages from these books and authors...how totally ridiculous and a waste of time...The main problem, well several, is the idea that Ms. Hay is neither doctor nor clinically trained, but states unequivocally that we have diseases because of something we did or didn't do (unresolved past issues). Bull. What about little infants with cancer, etc.? Their fault? Please.

Do I wish that unconventional theories would cure disease? Of course, but to accept these theories blindly is just wrong. Do I accept that wellness, being positive and seeking help ALONG WITH conventional medicine can make disease less stressful? Of course.

So, what is *my* problem? Well, IF these theories truly worked, why do people still die of ANY disease? (Their fault?) Wouldn't all disease be cured? (Again, blame the person with the disease?) Or, how can people put faith in a "leader/teacher" of alternative solutions who has stated that her own cancer was not documented, but cured by herself? (A TAD suspect?) How can the faithful follow along and proclaim these same self-healing theories trump medicine? As I see it, everyone wants to find a cause or cure, but to me there is a problem in that some ideas bring undeserved anguish to family members who blame themselves.

Again, the assumption that I, or anyone else, am a "follower" and unable to read, explore and digest any suggested resources offered is insulting, and accusatory.

Not to belabor these points, but not willing to sit by and watch, Jane

PS A favor? Stay in touch and let us know how things go, because regardless of the way things go, no one wishes your PWP anything but a long life and better health! Jane

By chroop67 On 2013.02.18 20:14
Knoosy
Don't leave. I value your input even if i don't agree with all you say. I know that Al has a very prominent opinion here on this forum and is respected by many. I respect his right to share but agree with you that that respect is not equally granted to all of us. I think that it is good to hear from a PWP but this is a caregivers forum and sometimes I don't want to hear from the PWP'er. I just want to vent w/o being made to feel like I don't empathize with the other side. I do but sometimes I feel like us frustrated caregivers are constantly being corrected.
On the road to health or trying to deal with disease we are entitled to explore ideas as we choose. I appreciate all suggestions and will pick and choose of my own free will.
Don't leave, please:)

By carman96 On 2013.02.18 21:03
This is exhausting! I mostly right now need answers to simple everyday things that come up.
I can read all the literature etc. But I come here to find out what other people are doing that could be helpful. I have learned a lot from most of the people here. New problems come up daily with my husband it seems.
Please everyone calm down. We are all under a lot of stress and do we really need all this back and forth? Its not helpful.
I know I don't have the time or energy to explore anything spiritual. I'm too busy cleaning up after my husband. Yes that sometimes involves poop and pee and spit. And worrying about the next time he falls and hurts himself. I could go on but you all know what I mean.

By jcoff012 On 2013.02.18 21:10
Carmen, Bless your heart! You are right...back to the boards and "normalcy". ;))) No one needs to keep this going...Hugs and I hope most of your days are good ones.

By carman96 On 2013.02.18 21:56
Thanks Jane! I think I needed a hug today!

By jcoff012 On 2013.02.18 22:48
One more before you go to sleep, Carman....

(((((((((((((((((((Carman))))))))))))))))))))

By Knoosy On 2013.02.19 00:31
chroop67,

Thank you so much for your encouraging reply.

I sense the care and compassion of people on this forum and I was planning to still come by and read the posts since there is so much helpful information posted by people with all kinds of experience. I am very grateful for and moved by chroop67's kind reply and if it's ok I would love to accept her invitation to stay. I may be a bit extreme for some, but I'm holding back a lot of my experiences and knowledge because I don't want to offend or overwhelm anyone nor do I enjoy being attacked.

Jane,

You have seemingly read whatever you read with some prejudice, based on your assumptions, calling them ridiculous and stating that these authors have no medical training. For starters:
Peter A. Levine, Ph.D. is the originator and developer of Somatic Experiencingģ and the Director of The Somatic Experiencing Trauma Institute. He holds doctorate degrees in Medical Biophysics and in Psychology. Dr. Levine has studied stress and trauma for over 35 years.

Louise L. Hay practices what she preaches. She cured her own cancer applying her techniques and extensively studied and compiled for many years evidence how mind sets, thought patterns and disease correlate. She was able to put her philosophies into practice when she was diagnosed with cancer. She considered the alternatives to surgery and drugs, and instead developed an intensive program of affirmations, visualization, nutritional cleansing, and psychotherapy. Within six months, she was completely healed of cancer. Her best-selling book introduced Louise's concepts to people in 33 different countries and has been translated into 25 languages throughout the world.

Little infants with cancer. No it's not their fault. In one of my posts I suggested to drop blame and guilt. That doesn't serve anyone. I also never said that any one person or approach has all the answers. There are possibilities that we live more than one life. Karma is the universal law of cause and effect. A child that dies of cancer might have come to the earth to teach something valuable to others. There have been little children who seem wise beyond their years and some that die and accept death naturally and make the whole family strong along the way. God works in mysterious ways. I am sure that there are people on this forum who believe in a higher source and not only in what is black and white and approved by science and the medical profession.

You can reject any other approach and refuse to even take a look at it, but maybe there are better ways to respond to material and views that you refuse to study and are not familiar with than just to degrade them and to brush them off as a waste of time.
The authors are sincere and have been helping and inspiring many people.

To all others,

I am not trying to give anyone any homework to read these books. It's up to anyone personally whether these approaches spark any interest for further study and exploration. Maybe an idea was proposed to look at disease from a broader perspective and it's just something to consider. I wish I had the time to read all the books I'm interested in, but our time as caregivers to indulge in our personal interests is kind of limited.

Thank you.

By dans316 On 2013.02.19 11:47
One of Louise Hays books was published in 1984 and has sold 30 million copies. Surely in almost 30 years, someone somewhere must have been cured of PD. Does anyone know of someone who was dxed with Parkinsons who has been cured?

By jcoff012 On 2013.02.19 12:08
Knoosy, last night, I agreed with Carman that enough was enough, so VERY briefly...

I never read anything with presupposed convictions; if I did, how would I learn or experience life? Don't assume I did not spend hours reading about these people, but do know that I not only read their words, but also the reviews and critiques of their books and literature. Some were good, others held my views.

Yes, to me they offer my husband nothing other than secular paths which we do not care to follow. By the way, my husband and I are Christian, so DO count us in with your suggested group that believes in Him AND in the black and white science of medicine.

Lastly, none of us wants to be attacked. Go back and read your own posts here...I removed mine because they were counterproductive.

We need not continue this further. You believe as you will, so shall we...others are free to do the same...and, as always, the purpose of being here is compassion and empathy...let's get back to it. Jane

By jcoff012 On 2013.02.19 12:12
Dan, :)) point well taken. See you elsewhere on the boards! Jane

By Knoosy On 2013.02.19 16:16
Jane, Glad you're finally opting for compassion and empathy.

You were becoming a little despotic deciding for others that some literature that you rejected without testing and applying any of it, was ridiculous and a waste of time. Maybe you could have added 'ridiculous a waste of time' FOR YOU or IN YOUR OPINION so that you wouldn't sour a potential beneficial path and experience for others who may be more open to it.

If you do believe in G-d, then you may want to be aware that G-d is all inclusive and your constant separating in you and others, rejecting and reiterating that there are differences is the kind of stuff that perpetuates suffering in this world.

The greatest teachers that I had usually pissed me off at first before I was able to realize their true value, because they threatened my belief system by breaking it down and opening me up to more awareness and making me revisit all that I thought I knew. Now I have learned not to buy into any belief system and not to even create one that I defend. I don't reject anything. I might put it on the back burner for later processing, but I do not judge new ideas and theories that I come across. I keep an open mind. I never say that I agree to disagree. I may say that I don't know enough to form an opinion and an opinion is usually something final. An opinion is a made up mind that doesn't allow growth, revisions and expansion for it wants to be in control. Keeping an open mind and heart is the only way to grow....and growing should never stop as long as we're alive. It takes courage.

By Knoosy On 2013.02.19 17:12
YES, Dan. People HAVE recovered from Parkinson's but since the 1950's there has been a mainstream doctrine brainwashing people that it's incurable.

The French nun whose miraculous recovery from Parkinson's disease put the late Pope John Paul II on the path to sainthood said Monday the phenomenon remained a "great mystery."

Read more:

http://www.myfoxboston.com/story/17757175/french-nun-says-cure-attributed-to-late-pope-is-great-mystery

Parkinson's Recovery: Read more:

http://pdrecovery.org/questions/

By dans316 On 2013.02.19 20:17
The Fox link didn't work, but I did google the story. Interestingly there was another post that said the Nun had suffered a relapse and the disease had returned????

The second link was interesting. Now with all the folks dxed with PD and joining forums like this and going to support groups, why wouldn't someone who had been cured share that information? I haven't seen anything in this forum suggesting someone has been cured and I would think there would be at least one of the cured who belonged to a forum or support group.

BTW, linking to a news site such as Fox etc. usually doesn't work because the stories that were there when you created the link, may have disappeared.

By Knoosy On 2013.02.19 20:55
Dan, even if the disease returned, the fact that she was PD free for several years should give people hope. I read that they were very thorough in examining whether she really had PD and they found that there was a recovery that they had no explanation for. They would hardly allow a hoax to be sanctified by the pope.

I don't know why people who recovered don't come forward. The site says that some started making money off telling people how they got cured but didn't really understand what really cured them. You have to search but there are stories of recoveries online. I found this link that has an interesting radio interview in it. Scroll down to Robert Rodgers on Voice America Radio:

http://www.blog.parkinsonsrecovery.com

I'm convinced that PD is curable, just not with conventional medicine at this point. The conventional medical approach only suppresses symptoms but does not cure. The second link is to a non-profit organization who says, and I believe them because what they say matches my observations that I was talking about even before I knew anything about them. I came across their site today. They offer free books. I feel it's definitely worth looking into for anyone who wants a cure. They talk about a disassociation from physical and emotional pain common in people with PD. A state which allows them not to feel anything, something that supposedly happens near death and stops the flow of dopamine.
The brain is amazing. There is a girl who lives and functions well with half a brain. She had epileptic seizures caused by her right hemisphere. The entire half of a brain was removed and the other half learned to take over the functions of the missing part. She was on the news.
Why couldn't PWP regain functioning with a full brain. The body regenerates constantly. It is the thought and mental patterns that holds the dysfunction in place. They say though, that at some point the brain may be too damaged by medication to achieve the cure. It's best to take as little meds of any kind as possible.
I observed that my PD friend freezes in situations that are uncomfortable to him and strangely functions and flows very well when he is excited and happy about something which also makes him feel safe and loved. I wonder if anyone here experiences fluctuations in functioning of their PD loved one that occur during certain circumstances and situations? The non profit organization talks about that but protects the identities of their patients.

And for the Christians out there. Didn't your messiah walk the earth performing many miracles curing the hopelessly ill, even the blind? Why do you have such a hard time believing that a cure is possible? A cure that may not necessarily only come from the mainstream established medical profession. Why are you sticking to a made up belief system that matches what your doctors and science papers are saying, rejecting the possibility of contributing factors stemming from spirituality, emotions and psychology? NOTE FOR THE ONES WHO ARE AGAIN ABOUT TO GO OFF AT THIS TIME: THIS DOES NOT SAY REPLACE ONE WITH THE OTHER. IT'S ASKING FOR A BROADER AND DEEPER VIEW AND UNDERSTANDING INCLUDING CONVENTIONAL MEDICINE NOT EXCLUDING. The greatest obstacle to healing is doubt and lack of faith. Not just faith in your doctor, but faith in the universe and in the possibility that there is a reason for everything in the universe. Nobody benefits from a why me victim mind set. Disease is usually a chance to grow for the sick as well as for the caregiver. I'm probably shocking the pants of off some readers by now. So what. Narrow belief systems are phony.

I mentioned before that I was stage 4 (last stage) sick. I even checked out for a moment and the emergency doctor said that it was a close call. I was not afraid. I trusted that I would get healthy but also knew that there is more than this body presenting our existence. We have a soul that is eternal, that never dies and that goes through different experiences. There is nothing to be afraid of. I was at the hospital for several months and absorbed everything anyone brought to my attention to get better and what helped me most and put me on a path of becoming a healer myself was a spiritual healer who laid her hands on me. The doctors had no explanation for how I got better so fast. They attributed it to their pills, but when the healer didn't see me for a month, I rapidly got worse and the pills didn't work so well. When the healer returned, I became well. Now I believe the healer gave me optimism and strength to tap into my own healing powers. It was a combination of conventional medicine, faith, active self-healing, reading Louise L. Hay and others and G-d's grace that helped me.

And for the Jewish, the activity of G-d, as such, is nothing unusual and the recording of His "mighty deeds" is seen as precisely the essential subject-matter of the Bible. G-d destroys the cities of Sodom and Gomorrah, enables Sarah to give birth in old age, and causes a well of water to appear for Hagar in the wilderness. Where is your faith if you are religious?

The greatest obstacle to being cured is lack of faith. You have to have faith. You, especially the PD people have to work on relaxing and letting go of fear. Fear is what causes freezing and stops the flow of dopamine. Now go ahead attack all you want. I post this because there may very well be someone who benefits from this. That is well worth it so I can take the heat.

By Knoosy On 2013.02.19 22:07
It's kind of amazing. I'm finding all this information online that I have no idea that existed and that talks about exactly the same things that I have been almost shot down for saying here in this forum.
The radio talk by Robert Rodgers, Ph.D. and also this:

Trauma and Parkinsonís

Jaclyn Gisburne, Ph.D. from Colorado and I have been corresponding now for four years on the connection between trauma and Parkinsonís symptoms. The focus of her work is solidly centered on helping people with Parkinsonís reverse their symptoms. Dr. Gisburne considers Parkinsons to be a condition of extreme overwhelm of the central nervous system caused by traumatic events and belief systems that were set in place in a personís life at an early age. The connection between trauma and Parkinsonís is profound.

She and her colleagues have identified three specific early traumas that occur prior to the onset of symptoms of Parkinsonís and a final trauma with the delivery of the diagnosis. These traumatic events result in brain wave distortions that ensure the survival of the person until resolution can be achieved. However, if that resolution is not found, the distortions continue to run through the body, denying access to dopamine reserves. The body becomes exhausted by the stress and continues to decline.

Jaclyn Gisburne will present her research findings about Parkinsonís at the Parkinson's Recovery Summit in Santa Fe February. Her contact information is on the Summit website.

http://www.summit.parkinsonsrecovery.com

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