your call is important to us

Hello? Health Info Line? (a government sponsored “virtual clinic.”)

Your call is important to us. Please stay on line to keep your place as a priority. Please state the first 22 digits of your Medical Card.

Health Info line. If this is an emergency, hang up and dial 911.

No look, it’s not an emergency, but I need to talk to someone who knows about Parkinson’s Disease. A nurse or a caregiver with experience to tell me if they have seen this before.

No volunteers are available at this time, but from 9 a.m. to 1 p.m. on week-days except statutory holidays, call the (Parkinson’s charity) at this number: 123-123123

Next morning 9 a.m. Call that number.
Your call is important to us. If this is an emergency, hang up and call 911. If this is not an emergency, stay on line to keep your place in the call priority. Have your health card with you.

(45 minutes of bland recorded music later):

Hello, I have Parkinson’s and something has gone wrong. I have been taking the pills since 2004 and they always made me better; now every time I swallow a pill I become very dysfunctional in a matter of minutes. I can’t take it anymore, something has gone wrong and I can’t even tell if I am underdosing or overdosing and sometimes I can hardly breathe and my body gets paralysed..

Excuse me sir, we are not authorized to discuss medical drugs with patients; you must call the head nurse at the Big City Hospital, 50 miles away.

Big City Hospital. The head nurse is on vacation, please leave a message or call back in ten days.
Beeep.
“Hello, look, will somebody be picking up the messages here, I am getting overwhelmed here; every time I take sinemet, Mirapex and selegiline, any or all of them in any sequence, I end up writhing on the floor in pain for 30 minutes; the tremors are so bad I hurt my hands banging on the floor… have you ever seen this before or am I the only one? It started very suddenly a few months ago…

Two weeks later, a nurse who deals only with Parkinson’s people called back.

As soon as I take a pill, all the symptoms temporarily become debilitating; for 30 minutes to 3 hours I can’t walk; severe full-body tremors; and then sometimes my body freezes from the neck down and I can’t breathe and I don’t have the strength to pull the blanket over me …

And she said, those are the symptoms of Parkinson’s Disease.

And I said well yes, that’s what I’ve got – but I have been taking the pills since 2004 and I could time it so that I could go all day – the pills were miracle drugs for me; now in the past 6 months it reversed; and it gets worse week by week and I dread taking the pills because I know that within 5 minutes I will be incapacitated and in pain. Is that how it normally progresses, for other PWP, or is it just me?

And she said, the symptoms you describe – that is Parkinson’s Disease.
You probably need a bigger dosage of drugs. Speak to your neurologist about this, during your next appointment, which I see is in five months. But don’t worry, what you are describing is Parkinson’s Disease – the tremors and freezing. If it becomes an emergency, go to E.R. The doctor may increase your dosage.

But this started when I got a higher dosage 6 months ago – I can’t predict what the drugs will do to me; it’s often best around 2 a.m. but after 7 a.m. I am a basket case… it’s like the drugs have suddenly turned to poison.

And she said, that’s the Parkinson’s symptoms. It’s fluctuations in the wearing off. The doctor will probably change your prescription the next time you come.

But that’s five months from now?
Well if it becomes an emergency go to E.R.
Xxxxxxxxxxxxxxxxx

And actually, it seems to me, the entire Parkinson’s Empire is in that situation. We really honestly collectively and individually really don’t know.
The only thing we know for sure about Parkinson’s Disease is that we are not sure about anything about Parkinson’s Disease.
What is sometimes stressful, is finding out that the experts know less than we do. And what we know, we don’t understand.
One pill makes you bigger
The other pill makes you small
The ones that mother gives you
Don’t do anything at all

Bob-

Awfully sorry to hear of your plight. Hard to do much from afar, but I will give it a go.
You say that this started simultaneously with a change in medication dosage? What med and what was the change? What other meds are on your plate? Were any dropped when the change was made?

What about diet or any other changes at the same time?

You say that 5 AM is worse than 2 AM. Any other time periods that are predictable in this way?

Did you get refills on the meds at the time of change? Have they been refilled since? Could you have gotten a six month supply of a bad batch of something?

It sounds like things go all to hell pretty quick with the taking of any of the meds. Right? Does it happen so fast that there is not enough time for a pill to make the journey leading to the brain?

Any difference if you completely leave off one med for the day?

Do you have any mucuna available?

Try crushing a day's worth of meds into a bottle of water and sipping all day. If that makes a difference you will know more plus have a handle on it.

Try the vitamins.

-Rick

Thank you, Rick. Typing this, I expected to hear <all our lines are busy, if this is an emergency, hang up and dial 911; if it is not an emergency, just hang up and forget about it

You mentioned an infection. What sort? Could you still have it? Alternatively, it might be gone but have left your immune system in an uproar. I would try drinking lots of tea - green if you have it but rebular if not. That supposedly quietens things down.

I'd take advantage of the morning truce and crush the sinemet into a bottle while leaving the other two alone. Sip it at a metered rate and see if it is any different. That might tell you if you have developed a sensitivity to it.

You can get mucuna fast through Amazon. If Canada doesn't let it in let me know. -Rick

i will try this
sometimees helps to try any thing so nnot to just roll over and give up - always good to try ssomething new and hope for better reesults nex time

will not hang up and call 911 leasst not yet.
youor call is important to us they willl say