Hi Nigel,

I cannot ignore this possibility. All told I have had 4 neurologists diagnose me with PD, yet none will refer me for a Datscan as they are too expensive and don't provide sufficient additional insight. Because of turnover at a major university hospital, I recently was assigned a new MDS, and I have not discussed Dascan with her.



- Brett

This idea haunts me to the core...suicide/resignation is subconscious as well as conscious choice... parkinsons is such a perverse contradiction ...existing in the fight/flight mode(till death do you part) but needing to surrender ones own concepts of safety tofind new ways of accessing the very juice/ the vital force that sustains life!!

I dropped in my mothers womb at 6 months gestation....so to keep me alive she took a neurooendicrine interruptor- DES (Diethyl Stiburol) and layed still in bed for 3 months....later I presentwith early onset pd.. I don't know the reason why i dropped but perhaps what iismore important is t hat the love of my mother saved me giving me tthe amazing giift of life in this time and place.....still... but begs the question in bioethics in medicine of quantity verses qualiity of life....when does one prolong life verses letting nature take its course in its wisdom. And now at 90 years old my mother exists with heavy opiod addicition to ease her coonstant pain of many decades...but, she also r esponds when I send her long distance healing, whhich is a tremendous gift for both of us... Managing nature can be a slippery slope.....and not without comprimises . I hate the idea of being a burden to o thers yet I am a caregiver foor my husband who suffered a stroke....and somewhere have lost a part of myself iinn that process... Thing is ..when there are deeply ingrained patterns, ancestral and otherwise we arebeing a sked to reach deep....way back into decisions that twere made by someone else..(its' not a sacrifice when we make the choice) sigh....bad and selfish as this sounds...does some part of me in my subconscious resent her choice to save my life -I certainly don't chose that position consciously. Thinking about it further my mother may have resented me though she denies it vehemently which just confuses me after having a dream where sshe told me I was keeeping her from doing what she wanted to do...not to mention that she left me with a babysitter at 2 weeks old for two weeks to take a break (she says she waited so I would have a good start...... wheres the maternal instinct in that???)

Thanks for listening...........

When I follow my feelings surrounding my birth, my mother, her pain what comes up are issues around hope for the future. We have a plum tree in our yqrd...it seems to tolerate all manner of neglect. in essence...its got a will to live. It took years before the blossoms turned to tiny fruit ....but, sturdy as the tree is the fruit is more fragile, more susceptible to the elements...wind , deer, water oor lack of , but perhaps most importantly care.

My ancestors were cherry tree planters - I've heard it said that the energy of the cherry tree is hope for the future...perhaps hope is our cure..and ours is a struggle between learning the humility that comes w ith surrender to developing the strength and discipline to overcome resignation. Understanding the nuance between the two I leave to you..

Lately I've been watching the TV series "Rectiify" - chock full of relevant prose and metaphor to my experience of pd. One of the most poignant moments is when Daniel talks about finding his will to fight for himself - as he struggles between surrender and resignation....between having his will utterly broken by cooerced confession and 20 years of solitary confinement for a crime he did not commit just wanting a window to freedom into this world - withh booth feet on the ground...

[QUOTE=moondaughter;1231422]This idea haunts me to the core...suicide/resignation is subconscious as well as conscious choice... parkinsons is such a perverse contradiction ...existing in the fight/flight mode(till death do you part) but needing to surrender ones own concepts of safety tofind new ways of accessing the very juice/ the vital force that sustains life"

...... a perpetual crisis of faith...maybe thats why "the cure" for pd seemsso elusive yet possible (and a rational explanation for susceptibilityy to placebo effect)l and imppossible at once ...it is an exercise taking me between resignation (my body) and surrender (heart and mind)-every day.

what gives you hope? science? drugs? for me its ~love..that is my religion but love demands risk (and discipline) sometimes....thats the hard part when what is at stake is ones own safety....

[QUOTE=moondaughter;1231474]
Hi Moondaughter,

I'm grateful to you for sharing such personal thoughts. Over the last 7 yrs, on three occasions I'v had, whilst sat endlessly awake, in the dark, as my family slept, what I call my 'dark eureka' moments.
I liken it to trying for hours to solve an algebra equation, then suddenly the answer's there ! 2x.... the sense of relief, peace and a feeling that you knew the answer all long is immense.
Only the question isn't algebra, it's how to end the suffering and the answer is not to be here any more.
But I'm aware of what is happening, luckily and I shuffle to my wife and children's rooms and watch them sleeping. That simple act infuses me with such love that I know I can take it and I will win. And with my final breath I'll smile and whisper " see Mr P, you couldn't break me !"

Somebody once told me don't let it define you.... For me this is counter productive, acceptance works better for me. "yes I'v got Parkinson's,I'll give nor expect any quarter"

The 'only' definite, 100% correlation I'v found between being well and not isn't
the amount, timing or type of dopamine replacing meds I'm taking it's how my mental state is. And yes I'v considered correct drugs=better mood=less parki
and my conclusion is better mood=less parki irrespective of the drugs..

When I first came to this forum I was just starting a program of increases under the care of a Parki specialist. Im now on double the amount of agonist and 150mg stalevo 4x daily and feel no real difference ! The reason is because Im living under the constant threat of my wife's cancer returning (told it will )
and the threat of bankrupt..

I mention this because placebo's,exercise and sleep all have a positive effect on mood via the other neurotransmitters..... again suggesting we should be looking beyond dopamine, after all 60y since levodopa and nothing better...

IT DON'T MEAN NOWT


When dark tragedies bring you down,
and black clouds turn sunlight into shade.
When expression is reduced to a frown,
and your zest for life begins to fade.
When you question “for what reason “.
and then wonder what it's all for.
When winter becomes your season
and you just can't take any more.
Imagine a list of all that has you cowed,
turn it to ash and let it to heaven float,
smile at the world and then say aloud,
“you know what, it don't mean nowt”.

Dear Niggs,

T h a n k y o u friend .

I'm so sorry that you and your wife are haunted by such an insidious threat-nothing like a shadow of death to bring the world into sharp focus.

I'mm wondering...how old are your kids? Will you be able to keep your home after bankruptcy? Are you not responsive to levadopa? I think it is such a good thing that your mood which you can initiate through exercise etc can override any drug effect? How do the agonists help you to function better? My very brief encounter with a non therapeutic dose of liquid deprenyl citrate was that it really really landed me in adrenalineville and I only realized it when talking to friends on the phone I became aware of my own narcissism and realized it was the drug talking and I didn't like it...in fact it scared the @#$%%&& out of me - its those eureka moments of grace I feel humbled and my ego overrides those enough as it is w/o adding adrenaline to the mix. Perhaps though we need a strong ego to carry heavy burdens...I mean,doesn't it seem like.the hero archetypes embody a healthy expression of uniqueness, individuality , and self-esteem (all prerequisites for courage)?

I feel this is such an important thread as it asks a question few endeavor to answer..conveniently overlook-thanks again so much for sharing a look into your world through your heart. Its posts like yours that truly matter to me.

Dylan Thomas, 1914 - 1953

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.


With kind regards,
MD

A kindred spirit, I love poetry and post regularly on 'creative corner' this piece is one of my favourites.

MD, my daughter is 18y and has just started reading History and English at University. My son is 14y and still lives at home. I was a contact lens Optician/specialist and had a small modest practice. It was nothing special but gave us a reasonable living. After 5y of battling I had to volunteer to hand in my registration as I felt it was only a matter of time before a client accused me of something . Since then my beautiful dedicated ladies have valiantly tried to keep it going while I try to sell, such loyalty ! but alas it's now in tatters and I still have not managed to sell it. I desperately hope to void the bankrupts court as I would lose the house and would struggle to get a mortgage.
2 y ago my wife had oral cancer due to an auto-immune condition, she survived technically but was butchered and suffered terribly during treatment.
We've been told because it's auto-immune it will return in 4y or 40y nobody knows, she is a woman of immense courage and inner strength and remains to me as beautiful as the day I met her.

I am dopa responsive and know I get benefit that comes from dopamine increases but stress is devastating to me. I know stress makes us all worse but it's the degree to which it incapacitates me that makes me wonder. I can go from being briefly almost normal to being like a statue.
Another thing that makes me wonder about other neurotransmitters is I cannot tolerate anti-depressants whether 1st gen fluoxatine (prozac) or newer citalopram. Even St.Johns wort and 5-HTP make me very ill with what seems like panic attacks or serotonin syndrome. (fluctuating bp,pulse,tingling,restlessness/agitation)
Scandanavian Pet.scan research announced a short while ago that contrary to current medical thought folk with diagnosed anxiety ie social phobia not depression had elevated not depleted levels of serotonin. Which could be why I can't tolerate anti-D's they're just piling on the bad stuff. Taking it further I wonder if serotonin acts as a master n.transmitter and as it rises it inhibits dopamine sooooo when stressed serotonin rises and dopamine falls, as I chill the reverse happens. It's all speculation on my part but wonder if I need serotonin reducing drugs as much as dopa elevating.

With regard to ropinirole (known as rock n roll here) it's taken me 6y to properly tolerate this drug and each titration takes min 6 weeks to settle Iv bumped up from 8 - 16mg and I'm still not sure how much it brings to the party. it and stalevo may be very proficient were it not for stress induced anxiety.

One final word on supplements, st johns wort and 5-htp work as anti-depressants and cdp choline/citicholine works as an agonist. How do I know ? because when Iv tried them the side effects/tolerance problems are exactly the same as the prescription only equivalents.

Wishing you love n mercy

Nigel