on and off and changing the past
 

Somewhere on my hard disk is a chart showing how the symptoms of PD have changed over the last two hundred years. Not because PD was mutating but because someone altered things because it darned well suited them to do so.
Back to that later, but, for now, you've heard of "off" and "on" and even "on-off" and you think you know what they mean. It's kind of obvious. Isn't it?

I thought so, too, until Boann sent me a paper from 1973. Ldopa was the new wonder drug. A study of the "on-off phenomenon" described it this way:
"<it> comprises rapid transient deterioration of the Parkinsonian deficit, which develops over minutes and usually persist for 1 to 6 hours. These episodes then clear spontaneously. Hypokinesia, tremor, and rigidity may be exacerbated over the period of deterioration. Hypotonia is common and has also been reported. (sic) These oscillations in performance are commonest in patients who have been on levodopa for over a year. They usually occur in the afternoon and they may be repeated in cycles. Their mechanism is not understood."
That is a pretty good description of what I and, I believe, Laura have been dealing with.

Farther on it continues: "Administration of levodopa for over a year has been found to result in a rise in growth hormone in the plasma, an increase in serum cholesterol, a decrease in glucose tolerance, and a delayed but exagerated insulin response. It appears that these changes take some time to become established, as similar investigations after shorter periods of levodopa therapy have failed to show the same abnormalities."
(from the British Medical Journal; 17 Feb 1973)

Rick, what WE call on and off, and sometimes our physicians do too, is the wearing on and off of medication.

The inexplicable on-off phenomenon that you have described is the true one.

It is not so often talked about, and doctors strangely do not often seem to recognise it, is it not properly in the medical literature, or has it faded from view as we have become a prey to the increasing drug cocktails and their myriad side-effects, so we can no longer clearly discern what is happening.

For me this is something that is emerging after i simplified my meds routine because I started to think they were doing memore harm than good. I feel that the 'real' parkinsons is stepping up for me to recognise it, and see what it is doing......... however reading fiona's post today has really got me in a tizz.........


So much is not known - though I spent an evening day before yesterday with the son of someone who recently passed away from late stage PD, drugs get slowly withdrawn when they cease to be effective, and to limit hallucinations. He was not happy with either the understanding of PD or the treatment his father received, but was only too aware of the dreadful toll the real underlying condition takes. So this is not something to underestimate, many patients like this only ever get to doctors late in progression, having put down many of their symptoms simply to 'getting older', and so are not overmedicated and messed about with in the first place.

We are between the devil and the deep blue sea, and posts like this that remind us of how the criteria are not fixed points, but vary with a sort of medical fashionability.

I am sure the best of doctors are aware of this, but wonder anyway about the levels of general ignorance that I hear about.

A recent example of this is a directive in the wake of the sinemet CR shortage, where nursing staff are instructed to substitute the missing 100/25 CR tablet with a regular one of the same apparent dose.......

I guess there will be lots of sleepless patients in nursing homes, and staff won't know what hit them........ and once their medication has worn off there will be other issues too, and some study will put it all down to some mysterious syndrome that happens in PD patients at 4 am, especially if no one ever bothers to reverse the directive, because the regular tablets are so much cheaper than the CR ones!!

Such basic mistakes in understanding do not give me hope that the true on-off that you describe here and that Laura and you have looked at will not be completely mistaken for something else altogether.........:D

Lindy

Lindy, you made a very good point about nursing homes medicating us..I have dreaded the thought of ending up in one of those places down the road, but had never thought of it in terms having to depend on them being in control of my meds..That is a scarey thought!!..We have enough trouble trying to figure that out for ourselves..I hope Im dead before that happens

Steve, there are enough well informed patients and advocates now to make a big dent in the way that things are decided for late stage pwp's, and all over the world initiatives are appearing that are about quality of life, not just research.

We have to hope that these bear will bear fruit soon and change the perceptions of long term conditions and care of people. it is something we all need to be very aware of, to get things moving in the right directions.

While we are waiting for pharma to get there, of course........:D

Hopefuly the patient cohort attending the WPC will be able to make some inroads, and patient attendees will hopefully be more accepted than ever before.

But it up to us all to press for change, where it is needed, we are not our parents and grandparents generations, who accepted the doctors words as authority and infallible.

There are many inspiring initiatives that are either patient led or patient inspired that are leading to change. Here in the UK there are now packs that you take into hospital so you can 'get it on time' - meds of course...... just a couple of years ago you were completely at the mercy of whatever junior doctor or nurse decided you were not competent to take your own meds, or hospital regulations that prohibited you from doing so.

All of this is in the right direction, for which I must apologise to Rick, as this is rather off topic.......... and not what he started this thread for.......

Lindy