Parkinson's Disease Tulip


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Old 05-28-2012, 03:00 AM #21
michael7733 michael7733 is offline
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michael7733 michael7733 is offline
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Default I am thinking of putting this on my headstone:

Killed in action in 1970 in vietnam...died of complications from Parkinson's disease 20??. Apparently, according to t he veterans administration, exposure to Agent Orange, began the cascade of events that eventually presented symptoms that fit the description of Parkinson's disease. So, in 1970 my oxidative phosphorylation process was uncoupled, and the adventure began. Am I saying that I have had pd since 1970? No, that is not what I am saying. What I Am saying is that 1970 is the date of the first insult
That is how I will refer to it from now on. http://www.braincrumbs.org/beastmix.html Listen to that. I am 63 years old, and I have had Parkinson'sdisease for no less than 23 years. It sometimes feels like forever.

I have learned much about myself in those 23 years. Some of that knowledge I could have lived without, and some of it defines who I am becoming. I think I posted this before, but here it is again:

Twenty things that I have learned:
1) what I have learned is not enough to slay the beast.
2) I have learned that there are many truly remarkable
people who have Pd, and those whom I have met
in this forum fall into that category.
3) Pd is not the end of living, but it is the beginning of
living a new lifestyle that sometimes has advantages
over my old lifestyle.
4) if one allows it to, Pd can develop a humble tenderness
in the heart that would otherwise be nearly impossible
to achieve.
5) the human body is a very remarkable organism whose
intricacies and synergy defy explanation.
6) the only complete cure for Parkinson's disease will be
discovering how to prevent Parkinson's disease.
7) an innate intelligence was included in the design of mankind,
and if mankind intends to understand the "how's" of
function, he is first going to have to acknowledge the
existence of that intelligence, which will lead him to the
next question- "Why?"
8) viewing the human DNA with a double strand of
one hundred million nucleotides on each strand will cause
severe eye strain. ( lol )
9) following the ontogeny of a human embryo as it defines, shapes,
duplicates, educates, induces, diverges, completes and maintains
itself, and not being in awe of what you have observed, in my
opinion, is impossible.
10)to think that the digestive, cardiovascular, respiratory, nervous,
excretory, skeletal, muscular, endocrine, lymph and reproductive
systems could possibly develop and work in harmony without
contribution and forethought is, in my opinion, not thinking at all.
11)the depths of compassionate emotion that are achievable by mankind
are only limited by the degree to which one allows himself/herself
to become involved in the needs of others.
12)without the negatives in life, the positives would go unappreciated.
13)an unappreciative heart soon grows cold, numb, and unable to care.
14)if one does not touch life with his physical senses, life's wondrous
glories he will never know.
15)if one does not touch life with his spiritual senses, the loving care with
life was created will forever remain a myth.
16)the root of all disease is planted in the soil of mankind's aggressive greed.
17)the levels of knowledge are these: physical, mental, emotional and spiritual.
Each level attained adds content to the level that preceded it, thereby
causing overflow and avoidance of stagnation.
18)a stagnant pond will die an early death, while one which
flows will provide many with life.
19)I found that in refusing to accept my limitations, I was not
allowing myself to explore my potential. On the other hand,
by accepting my limitations and exploring my potential, I have
discovered that buried inside this physical vessel that I inhabit
is a good portion of myself that has been suppressed by my
now limited part. In my opinion, it is now that portion's turn
to emerge and shine.
20)opinions are more diverse than I once assumed, and the above
statements are merely the opinions that I have persuaded myself
to hold as a portion of my set of truths until I persuade myself
otherwise, if I so choose.
May the abundance of God's blessings become a part of your daily
living.
michael
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Old 05-28-2012, 08:35 PM #22
lindylanka lindylanka is offline
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Boann,
Amazing to read this. You do not mention slowness below, I wondered if you have this symptom too? It's lovely to hear that you feel normal, that is the single most frustrating thing about PD and meds...... just lovely. It does make a good argument for the docs delaying medication as long as possible. Perhaps at point of diagnosis they should also be asking us what is right with us, and telling us what the potential trade off is. I know mine didn't, I had no idea.

Lindy

"Do I wish I could walk normally, type again, write with pen and paper, and stand without tipping over, not to mention dance, and all of the other less-essential things I have not been able to do for many years? Sure. I could take levodopa, and it would fix all of those problems – but for how long, and at what long-term cost? My lack of rigidity and dystonia means that I'm comfortable always – in fact, I feel completely normal, I just can't move the way I would like to – I don't feel "sick" in any way. If I did, it would likely be a completely different story. Oh, and I started using a personal trainer, and since I've been doing squats, I seem to have remembered how to get out of a chair on the first try – and this was while off Mirapex – what else might I be able to regain without drugs? So, i am going to stay med free for a while, see how it goes.

I hope that all makes sense."
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Old 05-31-2012, 07:16 PM #23
boann boann is offline
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Default slowness in spades

oh yes, lindy, i have slowness, loss of fine - and even gross (increasingly difficult to wash my hair, for example) - motor coordination. and retropulsion - did i mention retropulsion? "i'll just be over heeeeeeeere..." i say, as i carreen backwards across the room. (Retropulsion could be the reason for the "stooped stance" typical of Parkinson's – one leans forward to avoid falling over backwards)

it does make a good argument, but the *most* important thing, in my opinion, is, as you say, being informed about potential trade offs, and being given a realistic idea of how many (or few) options are available, how long they might work without disabling side effects, what the potential side effects are, how likely they are, etc. that way, each person can make their own decision based on their own symptoms and their own personal priorities. For example, I wish that I had held off on taking medication – I wish that my doctor had said "you may think this is bad, but remember, it's only going to get worse." When I started taking medication, I was almost symptomless, relative to now. But someone else might feel differently. Having all the information one needs to make an informed decision is the most important thing, imho.
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Old 09-19-2017, 08:08 PM #24
johnt johnt is offline
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I just came across this old thread while looking for something else.

Five years on and I feel qualified to enter my own thread. I'm now 12 years post-diagnosis and what with possible symptoms predating that by many years (by 10 years for a tremor in my right hand little finger and by, perhaps, 40 years for poor posture and a masked face - as a kid I was often told to "cheer up" even when I was happy).

I can walk almost normally. A major reason for this is, I believe, aiming to walk 5 miles per day.

My tremor is bad when I'm "off". It doesn't seem to have got any worse over the last 5 years.

I have no dyskinesia. I believe that this is due to my drug regimen including long half-life drugs which means that there's less variability in my dopamine and agonist levels. (A probable cause of dyskinesia is the variability of dopamine caused by taking levodopa based drugs every few hours.) I also think that this has been helped by my taking my drugs on an as needed basis (or to be more precise to take them in such a way that they come on stream when they are required), rather than on a regular schedule. The drugs I take each day now are:
Drug, Dose (mg), Levodopa equivalent dose (mg)
Stalevo, 5 x 75, 5 x 100 = 500
Ropinirol CR, 8, 160
Rasagiline, 1, 100
Total, LEDD = 760mg.

I'm now beginning to get troublesome dystonia: a stoop, a lean to the left, and a rotation.

My worst symptom is constipation.

I notice that my ability to remember things is declining. Not in a big way. But, for instance, I can't remember the names of my local football team.

Finally, but probably the most important, I socialise a lot.

All in all, I'm as happy as I've ever been.

John
__________________
Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 09-22-2017, 11:04 AM #25
KNPV KNPV is offline
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Hi Jean, sounds like we might have causes of PD that are similar. Crop spraying over my house when a child, bad fall off a horse when I was a kid (concussion), my dad had a tremor but not PD. He just always had a tremor when he got older. Thanks for sharing.
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