Does Brexit have a hand in my Pharmacy chaos…………?

Last week I picked up my monthly prescription of tablets in order to fill my pill box. It wasn’t until I got home that I realised they’d given me a different brand than usual so colours, shapes and packaging had all changed……..

From my frustrated tweet, which said how I really wan’t sure whether I’d put the right pills in the right boxes….. came so much conversation, Debate, concern and advice……I LOVE twitter for this very reason.

Many have asked why don’t you let the pharmacists fill a blister pack for you. Well this is the first time it’s happened since I changed Gps….my last Gp suggested I come off Donezepil because it was of no use……I asked him:

“So if it was you and Donezepil was the only drug available, would you come off it…….?”

He didn’t respond so I changed Gps and now have a lovely one willing to listen, willing to learn, willing to exchange knowledge…….just how a Gp should be, but only since reading my book has she changed. She was always kind, but never listened as much as now – bonus😊

Anyway when I asked the previous pharmacy about packing them for me they said they couldn’t put Donezepil to be taken in the morning as the information they have says to take it at night…….But if I take it at night it makes me have weird dreams so I take it in the morning – no more weird dreams but it means chemists won’t help me, or the last one I encountered said it wasn’t possible. I now realise, from Twitter, that it might be possible for them to help me ……….

So now I have a different chemist I never thought to check whether what the last one said was true……..until Twitter put me right…….

The conversation on Twitter lasted right up until the following day with various people tweeting their thoughts. It also provided lots of discussion with people highlighting their issues.

One person said how the print was so tiny it was difficult to read. This could be solved by the key words being in large print e.g. 2 at night maybe? Yes, I realise the printing machine probably can’t do this but maybe it could be handwritten in a space? But then someone on Twitter said,

“I find it useful to go into camera on my phone and zoom in to read small print”

What a good solution⭐️

Others said how a busy chemist is unlikely to have the time to put the effort into caring about shape or colour as they’re under so much pressure. Others have said how their local chemist was so helpful and had time to listen to their needs……Crikey, I’d never even thought of a post code lottery in chemists…….

One of my dear friends said on Twitter than he’s now succumbed to the chemist providing his tablets ready packed, but:

“I now have to trust them to get it right, so it means I am far less aware of what I am taking.”

So is that right too? I know that if I allowed the chemist to pack them for me and they arrived looking different, then I wouldn’t trust they hadn’t made a mistake. How would I know? After all there’s humans involved in the process and humans make mistakes. So I’d feel continually anxious when I looked at my pill box. I have also always taken a high dose Vitamin B supplement so that wouldn’t go in the blister pack, and would need to be remembered separately.

If I went on another clinical trial, those tablets wouldn’t go into the blister pack – another one to remember separately.

Others said how it’s the changing shape and colour that confuses. Here’s mine this month that changed colour

And the bottom ones changed shape….

Maybe those who request through their Gp could have a note on file to say use the same brand maybe?

Some said how the pharmacist has to tell you when the colour changes or they’re a different shape…..well mine might have told me but the minute I walk out I’ll have forgotten that he said it ……🙄

Some packs of tablets are see through and others you can’t see what tablet is in the blister

Why can’t they all be see through so you can see what’s in it? I suppose pharmacists must have a way of knowing🤔 but it would make it easier if there was consistency in packaging.

Also this time I was given a bottle of tablets instead of a pack

More confusion all in the same month……no wonder I didn’t know if I’d put the right tablets in the right slots!

Twitter, of course, provided lots of advice including this local link for me from an admiral nurse

https://communitypharmacyhumber.org/services-by-area/east-riding-of-yorkshire/el23-medicines-management-er/

Another more concerning Tweet was about Brexit 🤢…….their chemist told them that:

‘Brexit stockpiling has made it hard to get someone medication in store leading to capsules changing colour, other pills changing size as they try and get their hands on anything they can…….so this may be a small problem that’s about to get much larger……’

So the ever present Brexit is now going to compound the medication confusion as well as everything else🙈😳🤯🔫

For anyone who needs it, could a note go on their file to say, ‘needs consistency of medication appearance’ or ‘needs large print’ or whatever?

It felt like another case of we don’t know what we don’t know until kind people on Twitter Fill in the gaps……

We try to remain independent, to cope on our own. At every avenue I feel like there’s a battle that has to be fought……why? I know others have it so much worse but when a chink of your independence seems to be ebbing away you have a tendency to feel a tad sorry for yourself. I guess that’s how I’m feeling now……

From medical appointment to new medication ……

I forget pain from one day to the next, which often comes in handy. It’s todays pain that’s uppermost in my mind. I’m sure that must be the same for others? How difficult it is then for a clinician to assess pain? To get the true picture and how much is guesswork? The other question of “when did it start” is always a good one to ask someone with dementia …..🙄

I realised and had this experience the other day. I had to go to a hospital appointment about my jaw. I’ve had pain down the side of my face radiating from my jaw for months – yes, I know, I should talk less – ha!
When he asked me about the pain, all I could think of was the pain now, at that moment in time. I couldn’t for sure remember whether the pain was worse or better that day than on others. But I’d been making notes for months. That’s how I knew, even though I couldn’t rely on my memory.

I take my notepad with me each time I go to an appointment. I can’t write very well but I can decipher my writing enough to read most of it. I write down word for word what I want to say, especially at the beginning, and then read it out so I don’t waffle and lose track of what I’m saying and why I’m there. My Gp is now used to this and will often write down the outcome on a separate page at the end of the appointment for me. That way, I’ve got something to tell my daughters if they’ve been working and havn’t been able to come with me.

So imagine what it must be like for those who don’t make notes? Who aren’t capable of remembering? Yes, we often go to appointments with family or friends who we rely on but how much of their knowledge is reality?
I can’t emphasise enough for writing stuff down like this as it happens. You never know when you might need it. It helps take away the stress of a medical appointment which is stressful enough already.

But then what happens when new medication is prescribed? Will this impact on a person with dementia differently and if so how?

Well I was prescribed tablets to take at night to reduce the nerve pain in my jaw. Easy you might say…….but I take all my other meds in a morning😳…..I live alone so how was I going to remember to take something new at night? That was where my new friend ‘Alexa’ came in useful. She tells me every evening at 8pm to take my new meds and even if I’m not in the same room or at home, the message still appears on my phone – result!

The Consultant I saw wisely allowed my Gp to decide which form of tablets to prescribe as she knows all the others I take and more importantly knows me. My major worry was that I was told they’d make me groggy in a morning😳🙈🤯……I’m groggy enough in a morning with dementia in tow without extra grog. So it was with great surprise that I awoke feeling fine the first morning. I’d even slept for 4 hours instead of the usual 2/3 – an added bonus!
But the following morning, either the tablets kicked in or dementia kicked me while I was down as I felt very disorientated and strange, a new strange, which makes me think it was the tablets.

So please think of this when new medication is prescribed for anyone with dementia. It may affect them in ways you’d never thought about and might explain a change in behaviour or routine. And remember to ask how long it will be before they take effect as mine will be a month or two, which I might forget……

Hopefully tomorrow will be a better start and my body will get used to having this tablet join the plethora of others in my routine at the mo……🙄

Side effects of medication……..

Me and My Dementia – adding new tablets

The last couple of weeks have been a challenge to say the least. My new Gp (very nice now I’ve changed practice), put me on an anti-depressant which is also supposed to help with sleep and appetite. I’ve been managing on 2-4 hours sleep for about 18 months now and my body was almost at the stage of protesting. I have also lost my love of food, so we thought these might be the ideal solution…………wrong………

The first evening, an hour after taking them, I could feel my body switch off and start falling to sleep. But that only lasted one evening. The following day, I was like a zombie and couldn’t do anything. I had to force myself out of bed and doing things, otherwise I would have sat and vegetated. My head felt so weird and heavy. It carried on like this for 2 weeks when I finally had enough and stopped talking them. The first day without them, my head felt light again and back to normal.

Yes, they did increase my sleep to 6 hours but I felt so rough during the day that the negatives far outweighed the positives. I felt better on 2-4 hours sleep than I did with 6 🙄

It got me thinking how people in the late stages must feel when medication is added or changed. They might not know or understand why they’re feeling rubbish from the side effects. Why their head feels so different. Why their body feels so strange. Why they feel so rough. They might not be able to articulate how they’re feeling so lash out or simply sleep all day. I read of one supporter recently who was glad when their loved one slept all day as then they didn’t have to cope with the challenges. But what sort of existence is that for either one?

Side effects can be different for everyone but I don’t think enough is known about the impact on the brain for people with dementia. So more research needs to take place to understand the impact of medication on people with dementia.

Back to the docs for a rethink……

p.s. For those that knowme, yes I have tried reduced tea intake😏pretend tea😳 and boiled water😱 – none of which worked……..

Searching for a better world

Some or you may or may not know but I’m passionate about research.While I was still working I took part in a social research study carried out by the University of the West of Scotland on the challenges faced by those of us with dementia and still in work – this led to the Alzheimer Society publishing it’s guidelines for employers as there was so little out there – you can read all about it on the Alzheimer website –

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2963

I’m still taking part in a clinical trial and recently had my 6 monthly check up from the team. I can’t stress enough how much better you’re looked after when on a clinical trial than you are when you’re just left in the system. In the year since diagnosis I’ve had 2 appointments at the memory clinic and simply had the mini mental test repeated. In 6 months on the trial I’ve had 3 visits and had blood tests as well as mini mental assessment. They’re also on the end of the phone if you have any questions outside of these visits too. They look after you well because they are looking into whether a drug works or not. Drug trials are often to prove that drugs don’t work as well as trying to find ones that improve a condition.

The one I’m taking part in is the MADE trial – I’m testing is Minocycline – It’s an antibiotic drug currently used in the treatment of acne and they believe may help reduce inflammation of the brain in those of us with Alzheimers. I have a 1 in 3 chance of having the placebo as sadly you also have to have a control set of participants. If I’m on the drug, even if it doesn’t work, I should be free of acne –ha!

I’m on the drug for 2 years, taking it alongside Donepezil. Lisa, the research assistant comes to me – I don’t even have to go to them. She brings the next batch of tablets, checks how I am; if I’ve had any symptoms. When I have had issues, they’ve immediately gone back to the researcher and then rung me back with advice or information. For example, I had to have antibiotics for another problem not long ago and my Gp didn’t know what to give me because of the trial drug being an antibiotic. The researcher immediately contacted my Gp and rang me with advice on what to prescribe. Perfect:)

Being involved in research makes me feel valued.

When you’re diagnosed with a dementia there’s not a lot you can do but develop coping strategies to outmaneuver the disease. However taking part in research makes me feel as though I’m doing something which might help stop my daughters feeling the same inevitability a diagnosis currently brings.Being involved gives you that sense of purpose. Research doesn’t just mean clinical trials. Social research is equally important for finding the best ways to live for those of us already diagnosed.

We have to have an alternative to simply wishing or hoping that you won’t get dementia and that can only happen through research.

But please don’t just sit back and assume others will be those willing volunteers; do something yourself and get involved. 

https://www.joindementiaresearch.nihr.ac.uk

 

When a simple cold becomes a big deal

Having  had a stupid cold for the last 3 weeks made me think of the ‘nuisance’ analogy of having a cold and comparing it with some of the symptoms of Alzheimer’s that people can share with me and that everyone can relate to. It’s not the feeling unwell, it’s the nuisance of the extra symptoms a cold causes. The nuisance of the fuzzier head becomes a bigger problem. I’m sure you’ve all experienced a head cold – where the head feels foggy, fuzzy and heavy – welcome to our daily world. When you have a cold on top of what’s normal it becomes even more difficult to find the right words. I can understand now how simply feeling under the weather can now take on a different meaning.

Questions were also asked as to whether the extreme symptoms were being caused by the trial drugs. The constant headache for a fortnight. The sinus pain. There’s just no way of knowing. What do you treat? All very confusing and wears you down if you let it. So now I’m on antibiotics to try to treat the sinus pain I’ve had for 2 weeks – yes, I know we’re all suppose to reduce the amount of antibiotics we’re using, but this appears to be last chance saloon time. If that doesn’t work I may have to reconsider whether it’s the trial drugs and stop them instead……

Fingers crossed day!

Today, I’m due to get my first delivery of the trial drugs I spoke about in a previous blog. I’ll hopefully be taking Minocycline, which is an antibiotic currently used for the treatment of acne. The aim of the trial is to determine whether it might be of benefit in Alzheimer’s disease by slowing the expected rate of deterioration.

‘Inflammation of the brain is believed to play an important role in Alzheimer’s disease and it’s progression. Minocycline has been shown to have an anti-inflammatory effect in other research and is a potential future treatment for Alzheimer’s disease.’

This type of trial is becoming the way forward – by trialling drugs, already licensed for use of another kind to treat a different kind of condition. Developing brand new drugs cost millions and takes years, so using drugs already in use and testing them for other uses seems a very good use of time and funding.

I need your help! I said at the beginning that ‘I’ll hopefully’ be taking the drug……….. While I’ve categorically told them I don’t want the placebo. I’m not convinced they’ve listened. So to give me an even better chance of getting the real thing, can you all help me by crossing your fingers and toes in the hope that I don’t get the placebo!

Power of multi-people positive thinking –ha! And even if it doesn’t work, I should be free of acne!

What have I got to lose?

Getting the right medication

It’s 3am when I’m writing this blog – don’t worry, I won’t click ‘publish’ until a sensible hour as you may stop reading if email alerts come through in the middle of the night!

I’m taking Donezepil – a drug they believe will slow down the progression of Alzheimer’s –  it has a long list of  side effects including insomnia, hallucinations and tiredness……..well, they were right there. I really, really, really am grateful to those marvellous researchers who developed the drug. I just wish there was a way  you could produce medication without such side effects . I know that’s an obvious statement and I’m sure there will be biochemists out there chuntering, ‘if only she knew’!! There will be amazing people out there beavering away at reducing side effects I know, but to experience them makes living with a  condition even more miserable. At 3am in the morning, the advantages of taking a wonder drug pales into insignificance when compared with the side effects being experienced at the time, so I’m sorry if I sound ungrateful.  It’s always made me laugh when medication for the elderly and confused has ‘diarrhoea’ as a symptom – the very thing that can make life miserable for the individual and carer alike..

Whilst I’m glad that all the talented individuals out there are dedicated enough to work on finding new drugs for dementia, it would be really useful if more work could be done on reducing side effects that, at this already difficult time, exacerbate the problem. Exhaustion through lack of sleep, continual headaches, insomnia etc. etc., none of which were present before, now cause new problems.

I realise there will be perfectly sound scientific reasons why you can’t have  drugs without side effects and the side effects may appear minor compared with the disease, but, oh, for the best of both worlds to exist. The talented individuals who tirelessly work towards new discoveries would get a HUGE brownie point from me (and I’d even bake them my infamous lemon drizzle cake)  if they could work on reducing side effects associated with drugs. End of 3 am rant………tomorrow’s another day……….or is it today?

PS: On a lighter note, I’ve started a gallery to share photographs of people and places I love. You can find it next to the ‘Home’ button 🙂