[paula_w]

One day I realized that all of my meds are old . I take only sinemet, amantadine, and nortriptyline for pd. I have end of dose dyskinesia and when I ‘m out at night and taking extra, I can lose control, but the body is usually still and calm when I’m relaxed at home . We are all different, but I take fourteen or more 25/100 regular sinemet a day….every two hours- usually 2 or I could take one an hour, 1 and ˝ for that time limit. etc. I can back off in the evening at home, with just occasional single doses. It’s the agonists that cause dyskinesia for me and many of the side effects. They, along with CR are dyskinesia in a bottle for me. I’ve had it over 20 years - taken sinemet for 11 years. I have a speedy metabolism I think.
So when I saw Linda H’s article about the reconsideration of pallidotomies I shouldn’t have been surprised .Laura and I share an interest in looking at PD through neurotransmitter eyes, me because it is something I feel I can at least partly control. Agonists give me dyskinesia – all of them. Sinemet causes far less. It slurs my speech and robs me of voice volume, many people mistake for being drunk or mentally retarded . Well I am geez! I was trying to think of a better word but handicapped or ill or damaged all amount to the same thing. Something is off here!
To continue, amantadine controls my dyskinesia. I take two per day.
Nortriptyline is what is literally saving me some time in pd years. It boosts norepinephrine and I can pinpoint where I have to tweak it and eliminate most of the dystonia. I have waked up to misery for so long that pain is overall pretty well tolerated – too well. . I am amazed at how long I ignored a tooth infection and abscessing . When I went in yesterday , he immediately said “I can’t do this you need to go to a m….facial specialist[can’t remember the first part of that word] " and don’t go looking around for a deal – you need the best ones its deep. He might put you under.”
Letting that tooth go was purely procrastination. I should have done it before the wpc. But I just didn’t.
This is a reason why we have to fight off our cognition problems, I knew better than to ignore a dangerous abscess. There must be a tiny little corner of my psych that has a death wish…Sorry for the negativity associated with that word, but I have to live in the real world after having it this long, and I do think things like –“ If I let this go it could end it all.” But I won’t do that /I’ve got too much guilt as it is….lol
Nortriptyline boosts the uptake of norepinephrine, which is also low in pwp and is emerging now as a player in the research. They’ve known for some time. But does the word get to newly trained doctors or are these older meds defined as just that – old - and breezed by when choosing research? I’ve seen norepinephrine described as dopamine’s stepsister in pd. We are typically low as a group.
I just titrated up to 4 Pamelor , or nortriptyline, a day – 10 mg each so total of 40 mg a day. The maximum dose Is 150 mg a day so with this much room to move ,I could actually go back some pd years.
Anyway, the transmitters can be somewhat controlled. If I get rid of my dystonia, which is one of the most debilitating symptoms. I will get a fresh start again in the morning, and an unexpected freshness of thought and hope. Doing it thru DBS wouldn’t be my first choice if there was another way to achieve balance.
Progress so far: I’m waking up either with no dystonia or greatly reduced and short- lived dystonia. I’m a believer and laura’s article is , well I need more information
So which is better – a DBS or a Pallidotomy? It’s been a decade and maybe we should have a review and not invite any of them. ]
Nothing would surprise me. I have learned to look under every stone.

[lindylanka]

I have mostly done well on sinemet, always managed to keep doses low, and with the addition of entacapone, started to get PD to a place where I mostly manage - except for not being able to control the inevitable fluctuations. During the course of this year unwanted movements started to appear, mostly when out and doing things. Like Paula, I am good at ignoring things, and hate the whole thing of having to re-educate doctors and others who do not know about PD. It is a pet gripe for me that professionals are always saying that I do not look as though I have PD (no visible tremor). Part of the way it manifests for me is bladder problems, at home I control these by being vigilant, away I usually use a anticholinergic - in patch form these days - but over the years have tried several variations, different drug - similar effect, some better than others.

Due to a series of blunders prior to the WPC I did not manage to obtain any of these, and did the entirely stupid thing of restricting fluids, and wound up coming home to a dreadful UTI that was giving me very real practical problems. The missing prescriptions for patches turned up, I am now using them and into my second week.

EVERY TIME I go onto this class of drug I am struck by the difference in the way PD manifests. I wake up less stiff, more flexible, my medications do not wear off in the same way, and this time I can clearly feel that I am not getting the extra movements that have been appearing this year. In fact I am always closer to 'normal' where motor symptoms are concerned when on an anticholinergic drug. Most importantly my stride lengthens and the slowness and shuffle all but disappear..........

These drugs are now somewhat discredited for Altzheimers where they have probably been overused, as they contribute to confusion. Due to this and the fact that ALZ and PD are both seen as conditions of the elderly this discrediting process has been extended to PD, they are out of favour these days. My own neurologist was very sceptical when I raised it with him, saying they are old fashioned drugs and not used any more..... and would not discuss the PD specific anticholinergics that used to be used........ actually they were once a mainstay of PD treatment.......

They are specifically targeted at bladder issues, not PD, even though my urologist understands that his PD patients benefit from the non-targeted 'side-effects'............. I have had great improvement while on them, but not everything has been good, they do increase feelings of apathy, leading me to ignore doing things I KNOW should be done, and I become much less motivated all round. (But that is a biased view, I love being wholly engaged as a creative person, and can be to the point of ignoring everything else around me.......I call it creative flow, someone else might consider it OCD )

Paula has long talked about the balance of neurotransmitters, there have been lots of discussions over the years about different types of NT's, there is research into this going on in petri dishes all over the place, and even at the WPC some of the research seems to be around gaining a balance in neurotransmission that is not all dopamine related..............

So much that indicates our entire neurotransmission is thrown out of whack, with the decline in available dopamine being the trigger to a cascade of imbalance, and I think we CAN feel this in the way PD manifests. People describe fatigue, pain, dystonia, dyskinesia, apathy, depression, and more in ways that indicate that there is so much more going on........

IS exercise one of the things that can help modulate these imbalances? I think so, and that is why it works, it is activating and supplying receptors as well as keeping channels open, and I do realize that this is possibly where eastern and western thinking on health may start to converge...... that neurotransmission is uncannily similar to meridians.......

I've strayed a little in this, sorry Paula, but I feel sure this imbalance thing is a huge part of the 'why' of PD.............. and perhaps they do need to go back and look at why some of the older drugs were used for so long, and the improvements they brought......... I so agree on dystonia, it is usually a feature of my mornings, but not when on these drugs........ it goes from being distressing and very painful to being an occasional reminder.....

Why do I not take them all the time? They decline in efficacy for bladder problems after a while if they are used continuously, and I love being creative, the apathy that develops over time brings a very personal loss of ability that impinges on my identity......

Lindy

[Conductor71]

A close friend summed all this up for me after I relayed all that we go through with meds and everything always centered around achieving the proper balance:

"In other words, don't take homeostasis for granted."

And it hit me, yes this pretty much nails it.

I am primarily on old school meds now too; I want to stop Requip XL but need to wait until the Holiday break from school. That'll leave me with Sinemet and Amantadine. Amantadine has been wonderful; it's smoothed everything out so much that I actually have to pay attention to a clock again the wear off is so subtle.

Recently, due to anxiety I am having over the appearance of another symptom, I started to take Klonopin. This is great because I actually want to sleep at night. However, I noticed that my symptom seems more prevalent when on it; that is it surfaces almost all the time if meds wear off before I remember to dose. Well, I looked into it and Klonopin is in a class of drugs that exacerbates that particular thing by enhancing GABA which we end up having too much of in the first place! Now I am left wondering do I treat the anxiety which is the result of the motor symptom knowing that it may make that motor symptom more of an issue than it has to be or not!!

I tell my friends and family this and they are so surprised that the doctor doesn't know how all the drugs might affect this way. I used to make excuses for our doctors; it's unrealistic to expect the doctor to know every little thing about PD, but I think they should at least be able to guide us around these pitfalls. I just don't understand why they don't take into consideration how other neurotransmitters factor into PD. It's just plain oldie but goodie common sense. When I read or hear of how evidence based medicine must guide practice, I want to scream. Somehow, the practice of prescribing AD anti-dementia drugs didn't have to go through the evidence based practice trial even though PET scans reveal that only some patients will respond.

Results showed that patients with lower baseline AChE activity in the prefrontal and frontal-limbic regions of the brain were associated with greater cognitive responses to treatment.

What about the evidence that the very same drug that inhibits reuptake of acetylcholine is something that all people with PD do not need? It can, in fact, make our symptoms worse or better yet, put a patient on Aricept at the same time they are taking an anticholinergic to make both drugs absolutely pointless. Ugh. When we are diagnosed, we should all receive a baseline reading of our neurotransmitter levels whether through PET scan or cerebrospinal fluid samples. This should serve as a guide post for our treatment and a way to measure disease progression. I know this is oversimplifying, but come on, how difficult can that be. It's light years beyond what we have now.

Okay, sorry, end of rant.

Laura

[paula_w]

...and money.They are still thinking in terms of something better every two years or so which is how we shop. Gotta replace your computer , keyboards, phones, there'a always something new; just because it's not new , doesn't make it untrue or wrong. They still haven't replaced anything. They''re trying but we are shut out and labeled troublemakers.

[Fiona]

Laura,
stop apologizing -you make complete, lucid, informed sense and you write with elegant clarity. What you say is no rant - it is reason. I would really like to hear some of those on the - well, not sure how to call it - the "Not Tree Hugger" team - respond to what you are saying here...