I have not had a DATscan so can't help you there. I would encourage you to get a second opinion if you have not yet done so, especially from an MDS. My first neurologist was an MDS, but I still went for a second opinion. It helped when the second opinion told me if I was his patient, he'd send me to my doctor. There will always be doubts or other possibilities. I bring these up to my MDS all the time. The last one I tried was Lyme Disease. Doubts are human nature and also mean your taking charge of your health and understanding your condition, which I believe is a positive.
Struggling with Dx denial
Posted 01 January 2014 - 08:40 PM
Lately I have been weaned almost completely off my Sinemet and replacing it with a Dopamine Agonist (Ropenerole). My symptoms have back lately, especially the tremor, which seems more pronounced now (once it was just a finger is now my whole hand). This leads me to believe the Dx is correct and I have already had some progression since I was Dxd.
Posted 20 January 2014 - 11:18 AM
See my Neurologist B on Thursday (1/23) will be asking some hard questions about the impact of the meds change and what that means for his Dx. Also have an appt with a MDS from the office of Neuro A Monday Feb 3rd, a little nervous, but hoping they can either confirm the Dx or disprove it outright (nervous knowing that either is not likely).
Posted 21 January 2014 - 12:46 PM
I am 38yrs old and I had a datscan on 12/31/13 which showed billateral abnormal type 2. Which basically means I have no tails to the comma. I am now taking sinemet every 5 hrs then take extended release at night.
Posted 03 February 2014 - 02:03 PM
ok to put a cap on my Dx Denial and wrap this post up from that perspective:
I saw MDS today, and they would not refute the PD Dx, given that I am medicated and have consistent symptoms for early stages (while medicated) they said the only way to be absolutely 100% sure the Dx was correct would be to come back after being off meds for a few weeks, but also didn't seem to think that was necessary at this point. She was not concerned with the amounts of meds I am on, so only felt I should be reevaluated if I still need more reassurance of Dx, or I required escalated doses of my meds. At this point given the evidence produced from changing meds, and this MDS visit. I'm ready to just accept my fate for now exorcise my denial demon. Also Neuro A was there and seemed more willing to believe PD Dx is possible given the results of medication and how I am looking today vs original visit.
Posted 25 February 2014 - 01:29 AM
it is a bit of surprise to find reference to oneself. I see that there is some discussion here relative to pd and its impact on lives. I thought the best i could do to contribute in some positive way an short article i just wrote. id can be of any help t any one just contact me.
How I deal with parkinson
By: Jorge Lacoste
February 23, 2014
HOW I COPE
Written in response to the National Parkinson Foundations open request
Parkinson’s rudely intruded into my life almost 30 years ago. Since then, my attitude toward PD has evolved. I now consider it to be one of the finest instruments of learning I have. At the very least it is a wonderful baloney meter. Test it. If someone is full of baloney they simply can ‘t hide it from a person with PD.
I attribute my painting abilities to Parkinson’s — a wonderful gift PD brought me unasked. I have been painting for four years. I never studied art nor put a brush to canvas. The ability to paint just showed up one day as if by magic.
I am often asked how I am able to do the various things I do. I explain that while I may not be able to control what happens to me, I can control how I react. Thinking is the predicate of action. If I think: How weak I am, I only bolster the weakness in myself.
Dedicated professionals are investing their lives in the attempt to alleviate or cure the suffering of people with PD. These professionals offer hope — a wonderful thing. Hope can breathe life into a parched landscape. But hope cannot live that life. The life that must be lived is your life. Hope is the promise of a life more to your liking.
A good starting point is the realization that there is absolutely nothing wrong with you. Your vehicle may have a bad carburetor, but you, the, driver are fine.
It is the challenge of my life to be able to hold on, no manifest those principles of living that I hold so dear. My feet are always in the fire. I have been blessed to have a condition known as Parkinson’s.
So what’s the big deal? In life there times that permit one to coast. In fact the apparatus of life here is one of distraction. The entire edifice of life functions as a sort of filter. A filter of desires. We are constantly choosing and in this choosing our life is flittered away.
When one is afflicted the choosing become more intense. The afflicted no longer coast.
There is an old adage to the effect ‘as you think so you become’. It is also said that the absolute strongest force in this universe are thoughts.
That then is the basic framework in which we are all called upon to live.
I embrace my affliction. My life is not so much a battle as it is an attempt to honor understand and emulate that power that created me.
I am now 60 years old. It is crunch time. So my choices now seem more relevant and I choose to be compassionate, merciful and one. I fully understand that I am stumbling upon my way. Failures are stepping stones
For me this is how it should be. For if life is not guided by some benevolent compassionate power it should be. I have predicated my life upon this and die doing my best to embrace these principles.
You know what the difference is between those living with pd and those living without pd. Well there is no difference at all.
Now you are thinking , this guys nuts. What this all boils down to is simple. Where does one place his or her attention? Some choose to put their attention on the things they see around them. Others put their attention on the things inside them.
Thoughts are predicates of action. Since birth we have been immersed in this world. Frankly so immersed that we cant fathom anything beyond it. Those who do not have pd play, frolic, work for a while in this world. Those with it do to.
If pd visits then the attention which was going towards the world goes towards pd. But it is still the attention. You see all you are is attention. You have a span of life; You choose how to spend it. How? You put your attention on______________. (fill in the blank).
A life with pd a life a without pd , no difference,
Well than whats the point. Make a difference to yourself. Whatever span you are allotted do your best with it. Do good, be good, be one.
Let me finish by saying I am not particularly fond of the various groups having something/anything to do with Parkinson’s. Over time I watched and listened ad naseaam to everyone proclaiming they were going to fight, were fighting or would fight this pd thing.
My growing disgust with it all was intensified as I was myself contacted by various PD related organizations requesting I donate to the cause to cure pd.
For a while I tried to raise awareness of the plight of those currently diagnosed with pd. Hoping that i might somehow be able to turn the awareness of the need to help those currently diagnosed with pd. My efforts were to no avail as you can readily see for your self, the drone to cure pd so that those not yet born may not be caused to suffer continues unbated.
Still though I still occasionally look to see how things are for those who share the condition I have had for over thirty years. And in recently doing just that I paid particular attention to the various individuals whose brief life stories grace the virtual pages i saw on FB known as the many faces of Parkinson’s. And in doing so I was touched by the deep care and compassion of those lives reflected therein. Even as I sit here relating my thoughts to you I remain moved.
For I see a snap shot not of those of us who happen to be dealing with PD but rather a gathering of fellow humans, travelers as it were, contending in various ways with the vagaries of life on this planet. And I am warmed by their undeniable beauty. It is no wonder that the power that creates and sustains us all persists in the unfolding of his creation. To be a part of the fabric that is us all and to see therein that thread that is caused to bear as it were the light that serves as a buttress for the good. Who can not be astonished at the undeniable beauty.
Posted 25 February 2014 - 01:39 AM
Thank you, Jorge. I believe I have seen your paintings. I am one who has been honored to be included on The Many Faces of Parkinson's. We think very similarly about life. Your writing is beautiful and hopeful and full of love, as we all are when we come to know our true selves.
I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.
Posted 25 February 2014 - 09:04 AM
Your English is excellent and your input is direct. You indicated that you are a doctor or did I read that wrong? You must have a PhD in something right?
Posted 25 February 2014 - 11:38 AM
Thank you very much miracleseeker. Yes, I am a doctor (pathologist) with a PhD in medicine. I only rarely say this, because a)we are all patients in this forum, regardless of our profession and b)i'm not a neurologist, so I don't want patients to over-estimate the accuracy of my posts. I can be as wrong as anybody else.
Posted 25 February 2014 - 06:41 PM
My wife has had a shingles outbreak since mid december. .Shes finaly getting over the shingles and hopefully her other problems.
This makes my PD very unimportant.
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