Tips on when to start meds as received from my neurologist this last visit.
1.Meds do not slow or stop the progress.
2.Meds need to be adjusted as the disease progresses, not that the select med has lost its efficacy.
3.Meds are identified to treat major symptoms. Tremor being treated separate.
4.Falls and unseen damage to the brain in elder patients, most likely to end your life. The brain is smaller inside a larger skull. Thereby suffering a slight blow to the head, more serious and usually goes undetected as the victim is not taken to hospital.
5.Start meds to treat or prevent instability before you fall.
32 Replies
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RoyProp, I do not understand your "tips",,,,,,,, from your doctor?
This little nugget - “Falls and unseen damage to the brain in elder patients, most likely to end your life.” is kind of important, especially in light of this:
Acute Orthostatic Hypotension When Starting Dopamine Agonists in Parkinson's Disease
“29 consecutive patients with Parkinson's disease who were starting dopamine agonist [‘DA’] therapy were brought into the clinic for their first dose of agonist…
Ten subjects (34%) met the criteria for acute OH [orthostatic hypotension]. There was no evidence that OH was related to the use of a specific dopamine agonist or the concurrent use of levodopa. …
Because the morbidity of falls includes hip fractures, expensive diagnostic procedures, multiple emergency department visits, and hospitalization, the identification of patients who have OH in response to antiparkinsonian medication is of practical importance. Despite the small number of subjects in this study, we believe that drug-induced OH may cause significant disability in this patient population”
So get prescribed a DA, stand up, fall down, and die or suffer further disability due to brain trauma or broken hip. Yeah, obvious.
Sometimes, the obvious needs to be stressed. Although the points Roy has posted are things I now know, when I arrived on this forum, fresh with my diagnosis, I did not. So, for someone just joining us, or contemplating when to start medication, this is likely to be helpful.
Roy, I'm very interested in your forays into medication; we're on a similar timeline. The thing prompting me to start medication five weeks ago was that I was a little unsteady - the point about falling is a good one. My jury on the effectiveness of the medication I'm taking is still out.
Thank you stevie3. I made the post knowing most PwP already had this information. I posted to continue my tale and experience. I knew from the posts of others, this subject was a concern as they ask the questions, "is it safe to delay" or "when should I start".
Three years earlier as I studied this condition and its treatment, some neuros recommendations, start meds as soon as dx while others said it was safe to delay.
The point is, when you become unsteady or have balance issues, medicate.
Thank you stevie3, (and Osidge), I was hoping a friend would understand.
Thought I knew it all (or at least more than most) but DID NOT KNOW that bit about big skulls/small brains!! Since my husband has a big cranium, that was really good to know. Thanks.
The neurologist says that as we age, our brain gets smaller (duh! So that is where my memory is going):).
A small brain mass inside a large container, any sudden movement or stop, the brain impacts the interior of the skull.
He seemed quite serious as if he had patients suffer the consequences of not going to hospital and having check-up after any fall were you strike your head.
My neuro started me on meds upon dx. Im not imbalanced however my stress/anxiety level is terrible without the meds. Have been thinking of visiting a therapist what do u think. Im 75and dx last year.
Don't agree with 1) Azilect which is relatively new to US neurologists has been shown to slow progression in European studies. Trouble is many neurologists only know what they learned years ago.
It's not proven that Azilect slows progression. There is one study that suggests it might and that was done by the same drug company that manufacturers Azilect. No one else has proven it unless you have a study I have missed?
3) Study of one (me): I was put on Azilect by a Neurologist when I was first diagnosed over four years ago. My diagnosis was confirmed by a 2nd leading PD Neurologist in the Philadelphia area. He was not an advocate of Azilect but we agreed I should stay on it. He has been (for want of a better term) surprised by my lack of progression over that time... and in some ways notable improvement (e.g., blank stare has gone away}.
Now I of course have a vested interest in believing it works... but I would still suggest (read strongly recommend) that anyone recently diagnosed with PD consider getting on Azilect ASAP.
I am not saying that it categorically does not have a disease modifying effect but I am questioning your comment because I have seen no studies yet that support the Adagio trial.
Azilect is made by TEVA the company who paid for the ADAGIO trial. If this trial is acceptable then why do people complain about not trusting big pharma .?
It is a treatment so yes you will see symptom relief such as regaining smile.
Just about every drug we take for PD has at one time been thought to delay disease but further studies have not proved any of them are.
Still Here's hoping one day Azilect will be proven disease modifying but until then we can only say we are waiting.
Understand your argument but not sure why you are choosing to argue.
There is an expression I use in consulting with CEOs that goes: "Which way do you want to be wrong....'
In this case "...taking Azilect and finding out it doesn't slow progression or not taking it and finding out (too late) it would have?"
Note again from the article I cited:
Bottom line- it is not certain if Azilect slows progression but it does appear to change how people are doing over time and it may be better to start medicines before movement problems are significant.
Finally (Study of one), it has worked for me. So I would still suggest (read strongly recommend) that anyone recently diagnosed with PD consider getting on Azilect ASAP.
Just saying I don't believe that opinion is proven fact either. And telling anyone who will listen based on my experience it is not... if you are newly PD diagnosed get on Azilect.
"Which way do you want to be wrong....taking Azilect and finding out it doesn't slow progression or not taking it and finding out (too late) it would have?"
I think one of the reasons I find this site useful is that it is about experience. Your experience may not be my experience. But I want to know what your experience was because it helps inform my decisions, along with professional advice and research.
NyQuil used to be my go-to cure all but I don't take it anymore. It says right on the label that people with PD should not take it, I think Benadryl does too.
Last night before bed I took a heavy dose of Benadryl as recommended by my neurologist for tremors. He said try it , if it does not work he will make a prescription for Amantadine. The Benadryl did not help.
The point about balance makes sense. I learned from watching my father (a physically strong man) that the balance issue can happen at any time. He fell a few times, and fractured a hip without ever falling completely to the ground.
One observation about falling is how it can mentally affect the person. I've noticed this with several individuals, not just PwP. The fear of falling again can become overwhelming (as if confidence is shattered).
I feel off a foundation wall into a basement, almost got seriously hurt diving and walked on a broken leg for 6 weeks - and a few year later figured out why!
It is amazing what the body can do to adjust. The ortho said that in olden days, people with broken hip, etc., just kept going and the body compensates over time. He gave the example of a character on the US western Gunsmoke, who walked with a slight limp.
"Falls and unseen damage to the brain in elder patients, most likely to end your life. ", because, from archneur.jamanetwork.com/ar...,
"Dopamine agonists ['DAs'] can markedly reduce blood pressure, and precipitous changes can occur even with the first dose...In PD, OH [orthostatic hypostension] has been a well-recognized adverse effect of *all* available dopamine agonists.
...
We studied the frequency and severity of acute changes in supine and standing blood pressure readings when patients took their *first dose* of a dopamine agonist. ...After agonist ingestion, 10 patients (*34%*) met the criteria for OH...All patients received a low dose of agonist"
And that's just after the first dose. After 2 weeks I can vouch for it getting worse. Doctors may blame DA induced OH on PD when it is actually caused by the DA. So, elderly PD patient stands up, faints, falls down, and ends up either dead or further disabled as a result of, take you choice, brain trauma or broken hip.
"we believe that drug-induced OH may cause significant disability in this patient population"
So, what this says to me is that if you decide (as I have) to take a dopamine agonist then it's a good idea to be very careful initially and to keep an eye on your blood pressure. I've got a monitor and am measuring it twice a day. So far, so good. I've been taking it for five weeks. My main issue is nausea, which I'm using ginger to combat.
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