Some hospitals, care homes and carers are actively suggesting that PD medication can be given up to an hour late from the time prescribed - not really "Give it on time". How would this effect you? If at all?
I am on a four hourly regime, and I start to become stiffer when my next meds are due, so a further wait would start to cause me to limp and have a worsening tremor as well as becoming more anxious about when I would get my medication!
I don't know why but it is almost as if your/my Doctor want's the Dopamine to leave your system before you take your next dose. Do we need off times ?
Absolutely not! The lag time is solely for the benefit of the staff.
Policy allows an ordered med to be given up to an hour early or an hour later then the prescribed time. While this time span is OK for most meds, it is NOT OK when you have PD. Nurses and some MD's need to be briefed on the importance of on time PD meds to avoid problems and symptoms.
Parkinsons UK ask to be informed about medications not given on time in hospitals and care homes. They have campaigned on this for years.
would mess me up.
Thank you for your responses. Getting medication on time in hospitals is still a problem, it would be interesting to hear some examples of the effects of getting pills up to an hour late, so that we can stress that even a short time frame can cause us problems.
The Parkinsons foundation gives free kits complete with directions on all things having to do with PD patients, including stickers for nursing staff, charts, docs , etc. it makes clear the necessity of giving meds on time and using patients own meds when necessary. Get one. Take the material to the nursing home, hospital to the nurse manager and show each nurse. Put stickers on the door and next to the bed if they won't let you put on the chart. Write a short note listing all persons (preferably by name) that have received this information. Send cc's to your doctor, social worker, facility manager....anyone important. Always let everyone know they are being instructed by you and the PF and scrutinized by each other. They only get away with this stuff when they keep information to themselves. You must have your meds on time....they have no way to know when the effectiveness begins to wane....only you can know that by how you feel due to your individual metabolism.
If you have to go to hospital, meet with all the important staff before, including your advocate, and advise them as to the necessary procedure. Explain to them that c/l is not like an antibiotic which can be taken late.....it is required for immediate use. It's stunning how ignorant these people can be!
Let them know that a delay causes a decided change in your walking (per the limp) and thereby increases your chances of falling. You are sure they wouldn't want their delay in giving your meds to be the reason for that (in the US at least, hospitals, nursing homes and rehabs are graded on 'fall' numbers and are petrified of having that number rise. Let them know you are keeping a diary noting the time of each dose.
Just think about the effects of PD - mobility problems, tremor, dizziness, stiffness, orthostatic BP upon rising, and realize that all these symptoms can begin to recur when you are low on med....AND increase the likelihood of a fall. Tell them that. They will be alarmed at the emphasis you put on falling but my guess is that you will see a change.
Btw, if they give the med late, then the next one, if they give it on time, will be too early. If they give the second one late, then the entire schedule is thrown off.
I really appreciate hearing this from another PD patient. Thankyou Donzim! I keep an ongoing record of times I take my meds along with times of any symptoms or possible side effects. I have found that if I am more than 30 minutes late I go into off times. Although at times I have gotten away with being one hour late before the symptoms actually become noticeable. But when the off time does begin, it is much harder to get rid of symptoms and get back on track. The symptoms are much more pronounced and it can take a minimum of one hour to get relief from the meds. I have to take my next medication at the time I have scheduled. It feels as if my body has adjusted to every 6 hours. If I stay on time, like every 6 hours for C/L sometimes I hardly have any off time at all. But as I said the farther I am late the worse the symptoms. Making the possibility of a fall much greater. That's the last thing someone with PD needs to do. Not too long ago I slept 2 hours past a scheduled dose. It took about two days to recover from that blooper! I have my cell phone with me at all times so I set the alarm to go off every 6 hours with the name and dose of meds due. My husband is familiar with my med schedule and knows what my cell phone alarm means so if I would wind up in the hospital he can go over the med list and the schedule with the doctors and nurses. I had a hospital stay last fall, most of the staff did not understand the importance of giving these meds on time. My husband patiently kept going over the med schedule with the nursing staff because all except one or two just didn't get it. That's when I realized how easy it would be for a PD patient to suffer harm in the hospital because the staff is late with the meds.
That's a very good tip about the possibility of a fall.
it's the one thing that frightens me and if I went into hospital everything could go into a downward slide I am 76
I meant to say that being able to threaten the possibility of a fall is a very useful piece of armour
I agree. But isn't it a shame that the threat of a fall - which could du us so much harm, is the carrot to get medication on time! It should be done without us being concerned at a worrying time.
Actually the threat of fall is not the carrot....it's the stick!! Haha!!😀
I've not had to go into hospital since taking meds for PD but I have another condition and was once left 5 hours without my medication because the pharmacy was 'busy'.. So last year when I had routine surgery (unrelated to PD) I took my own supply of medication and I refused to hand if over! I also made sure my husband had a back up supply for me. I realise that's not possible for everyone but that's what I would do in the future.
In the UK I understand that there are no care homes specialising in treating people with PG. Why?
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