Meds changed without notice.

[Noella21]

My husband has been on sinemet 125mg 5× daily and sinemet cr at bed time. This Works well for him. The new pharmacy assistant has been wanting to put his parkinsons meds in with his other blister packs . These are administered wirh meals and bed time. Where his sinemet is given 8am 11am 2pm 5pm and 10pm. If he is to have them every three hours and he gets up at 9.30 and goes to bed at 10pm this does not work out. Finally got her convinced not to touch his regular meds and leave those blister packs alone. The blister paKS only have 4 slots so they have to make up four seperate packs for the month on the 8PM pills. This works fine but causes a little waste. The health aids are not allowed to dispense pills so putting them in a bottle is not feasible. So this month we get no 8PM packs at all when questioned they say the cr at bedtime. is his 5th dose. This leaves him from 5pm till 10pm 5 hrs with no meds. I asked the pharmacist if he wanted to come and put him to bed for me after 5 hrs with no meds. The pharmacist will call my doctor to see if he can change it back to the way that we have been doing it for the past three years. Our doctor has never to my knowledge said anything about having changed anything this month. This is going to cause no end to confusion anot her trip to Calgary to the movement disorder clinic . I would think I am past spitting feathers at is where I am at.

[TheresaCurley]

My heart goes out to you. These kind of problems are so frustrating.

[Bazillion]

If the pharmacist can't get it right what hope is there? They of all people should be aware of how important it is not to mess around with timing of PD medications.

In the UK Parkinsons UK have been campaigning to allow PWP to administer their own meds when in hospital because they just give them out at set times ,people are going into hospital with well controlled symptoms and coming out completely disabled in a wheelchair because their meds have been ****** up. This is totally unacceptable

[paddyfields in reply to Bazillion]

Likewise the GP's who cannot understand the concept of priming the pump and behave as if allowing extra on one occasion is somehow going to a monthly drain on the NHS finances . The non-specialist medics rarely see unmedicated later stage PWP's. I have heard of an elderly PWP whose wife discovered that he was in danger of being diagnosed with epilepsy because he was thrashing about having not received his drugs in hospital. Many people with other long-term conditions have the same problems with the system. Someone I know was shocked at the ignorance of the hospital doctor at the most basic level of Diabetes Type 1 when she was admitted for a breast cancer operation - her consultant had to intervene

On another forum someone had to take the drastic step of presenting themselves at the GP in their full unmedicated glory. The GP was shocked and immediately changed his tune and gave up insisting that the PWP should according to the computer have enough tablets at that point in time.. In that instance other PWP's who lived nearby were able to supply the shortfall before the GP saw sense .We need buffer stock of meds to cater for " .....ups" with repeats (only two of mine have been correct since before Xmas) and dare I say it, the possibility that a PWP might drop/lose a tablet or two. We cannot afford to sail close to the wind especially in rural areas where a trip to the doctors by a non-driver may be a major undertaking. (

[Noella21 in reply to paddyfields]

Exactly my point. If doctors could read this sight maybe they would understand how hard it is . Living with this decease is hard enough but all the issues around it make it so much harder than it should be. We are in our seventies and made to feel like we are senile. They roll their eyes when I bring up yet another of their mistakes. Thanks for your support on this.

[honeycombe3]

Paddyfields,

Thanks for that - you have neatly summarised my own position regarding repeat prescription meds. I have been dxd with PD for 12 years & have not had a problem until recently because the medics operate as a support team with the patient at the centre: consultant, GP, PD nurse, neuro physio, hydrotherapist, et al. They see their role as one of empowering the patient with a particular emphasis on self-medicating & our small rural GP practice run by 3 part-time partners was voted best in the county for care & quality.

I have the misfortune to suffer from heart failure after 2 heart attacks & was ambulanced to hospital in March with another heart episode. As always I took my PD meds with me in my own weekly containers hidden amongst my toiletries just in case. There was no problem however as I am now known to the cardiac team as well as the neuro PD support staff. I am a retired headteacher with a background of working with medical agencies so I understand the language & I have the confidence to ask for explanations for anything I don't understand. After a couple of early catastrophes resulting from my meds being taken from me (& then wrongly given hospital alternatives) I have helped to deliver training on this.

I was asked 3 months ago when I was going through a rough patch if I would like to try the tray method of drug delivery. After 2 weeks it was obvious this wasn't for me - for the reasons you mention - mainly no buffer for the frequent changes in dosage & timings of meds. Despite he best efforts of the GP surgery staff it took 2 weeks & supporting letters from cardiac & PD nurses to persuade the practice pharmacy staff to stop doing so.

[paddyfields in reply to honeycombe3]

What is the "tray method". Is it like the "just in time" system which reduces the amount of warehouse space in individual outlets. Or as my Irish mother used to say

"just in time to be too late"

[BUZZ1397]

I like what Bazllion wrote in reply. Scheduling doses strictly has not been my practice. If your spouse is no longer to medicate independently, you must anticipate the best timing for him. Your pharmacist is a jack off, no doubt about it.

[JohnPepper]

Hi Noella. This all sounds like a nightmare. Are you aware that if your hisband takes any levodopa medication while there is still protein in the stomach, the two interact with each other and you lose that levodopa and it does not get to the barin, where it is needed. So I would query the whole way this medication regimen is supposed to work.

[Suzzi in reply to JohnPepper]

No one ever told us this?About protein and levodopa not working together?

[JohnPepper in reply to Suzzi]

Look up Levodopa, protein metabolism in the gut.

John

[Noella21 in reply to JohnPepper]

Yes I had heard this though both the doctor and pharmacists do not believe this The way we have have been doing them 5 times daily it avoids having just eaten. I think my doctor will be back today and they have faxed him to switch our meds back to the way they have always been. It seems no one is as invested in our help as we ourselves. It ia battle to stay on top of all this stuff. Thanks for your support. This Web site is what keeps me sane. Lots of good information sharing.

[JohnPepper]

Look up the subject on google.

John

[Noella21 in reply to JohnPepper]

I did read up on all this and a high protien diet may be a problem for some. A normal diet does not affect most people. We never take them with meals . My husband is diabetic and needs to eat frequently to keep his blood sugar levels balanced. Between that 8 different kinds of meds and 5times parkinsons meds. Also very low on vitamin b12 doctor says to be sure he eats meat and eggs every day. I am not even going to try to figure out how to dodge the protien. For all these years we have never noticed that it made a difference . So we will stay with what works. God help any one in care homes and hospitals where they administer all meds only at meal time and bedtime. The movement disorder clinic does not feel normal protien intake is a problem for most individuals .They say if it seems to affect you than take them on an empty stomach. That may however cause nausea .

It is enough to make your head spin.