347 replies to this topic

[aaamusements]

What are the statistics? What percentage of people have had negative effects?

[chasnbons]

Hi Daryl

 

I don't want to comment on your questions as like you say it's your decision alone and much too personal for advice from me, but just wanted to say good luck with whatever you decide.

 

I know you will make the best choice for yourself, and that's all you can do mate xx

[stardust]

What are the statistics? What percentage of people have had negative effects?

I can't find the webpage at the moment for that.

The link I provided takes you to the page where you register etc... I believe it was on one of the dementia organisations pages on Facebook where I read the first and second round trials in the United States, but cant remember seeing any web page links.

[stardust]

Hi Daryl

 

I don't want to comment on your questions as like you say it's your decision alone and much too personal for advice from me, but just wanted to say good luck with whatever you decide.

 

I know you will make the best choice for yourself, and that's all you can do mate xx

 

Thanks buddy - kind words, as always xx

[letmein]

Quick without thinking about it what's your first thought on the matter?

Yes/No?

 

I know everyone's different but if I have a difficult decision to make I usually already know the answer, as I suspect deep down you 'also' already know 

what your going to do.

 

If it were my decision I'd probably give it a try, rather than spend the next ten years regretting it.

But as I say that's me, you and only you can make the final decision.

 

I'm sure you'll make the right choice for you whatever you decide, and at least your considering the choices while still able to.

 

Best wishes.

 

 

M

[thegambler]

go with whichever gives you the best quality of life...  good luck with whatever you decide.

[stardust]

Happy New Year everyone...

 

I hope that you all have a peaceful and happy one... I certainly hope that my start to the new year doesn't begin as it ended over the last few weeks!

 

My Mam was rushed into A&E about three weeks before Christmas with pneumonia... I rushed to the hospital to be with her, forgetting to take my own meds and was there over 12 hours with her, before my stepsister came to bring us back home... She was released home under the care of the staff at her carehome, otherwise they were going to keep her in hospital but heavily sedate her because of her advanced Alzheimer's Disease - it was an easy decision for me to make to let her go back home, as I believe that she would've died in hospital under sedation, trying to clear her airways of  the infection.

 

About a week later, I started to feel unwell... I shrugged it off as a heavy cold at first because that is what it just felt like - but then a few days before Christmas I was having to be laid up in bed, not being able to move and totally feeling as if I wasn't in my body at all... I felt awful. I shrugged it off after a few days because Christmas was coming and I went to my nephew's house to be with the kids for the festive holidays - feeling dreadful, but a bit more functional than I had felt for a few days.

 

However, a couple of days before New Year's Eve, I went to the shop and when I got in again, I passed out and when I came round my nephew had come and somehow managed to get me into bed... It is a good job he was coming that day otherwise how long I would've been on the floor, no one knows!

 

He managed to get me an emergency appointment at my GP surgery on 30 December, and my GP said that I had pneumonia and had had a flu virus, and that I should've gone to have seen him much before I did (which is contradictory at my GP surgery as you have to be dead usually for a fortnight before you get an appointment ).

 

Anyway. I have been put on two lots of antibiotics and have got to have an ECG and full blood tests next week, as it has had an affect on my heart with all the fluid (which I thought was just snotty cold lol).

 

Hopefully I will be on the mend soon...

 

Take care, Daryl x

[letmein]

 

Happy New Year everyone...

 

I hope that you all have a peaceful and happy one... I certainly hope that my start to the new year doesn't begin as it ended over the last few weeks!

 

My Mam was rushed into A&E about three weeks before Christmas with pneumonia... I rushed to the hospital to be with her, forgetting to take my own meds and was there over 12 hours with her, before my stepsister came to bring us back home... She was released home under the care of the staff at her carehome, otherwise they were going to keep her in hospital but heavily sedate her because of her advanced Alzheimer's Disease - it was an easy decision for me to make to let her go back home, as I believe that she would've died in hospital under sedation, trying to clear her airways of  the infection.

 

About a week later, I started to feel unwell... I shrugged it off as a heavy cold at first because that is what it just felt like - but then a few days before Christmas I was having to be laid up in bed, not being able to move and totally feeling as if I wasn't in my body at all... I felt awful. I shrugged it off after a few days because Christmas was coming and I went to my nephew's house to be with the kids for the festive holidays - feeling dreadful, but a bit more functional than I had felt for a few days.

 

However, a couple of days before New Year's Eve, I went to the shop and when I got in again, I passed out and when I came round my nephew had come and somehow managed to get me into bed... It is a good job he was coming that day otherwise how long I would've been on the floor, no one knows!

 

He managed to get me an emergency appointment at my GP surgery on 30 December, and my GP said that I had pneumonia and had had a flu virus, and that I should've gone to have seen him much before I did (which is contradictory at my GP surgery as you have to be dead usually for a fortnight before you get an appointment ).

 

Anyway. I have been put on two lots of antibiotics and have got to have an ECG and full blood tests next week, as it has had an affect on my heart with all the fluid (which I thought was just snotty cold lol).

 

Hopefully I will be on the mend soon...

 

Take care, Daryl x

 

Just another day at the office then.    

 

 

 

M

[wearecity]

Oh dear Daryl, you do have a lot on your plate.

 

I can very much appreciate looking out for your mum, but you do need to look after yourself. I was concerned about my mum, who was in her late 50's and not that well, when my nan was ill in her 80's and my mum, was looking after her and running herself ragged. I'm sure some of the younger family members will be concerned about you also, not looking after yourself.

 

I think many of us, have had that nasty hanging around flu/cold, even The Queen, hasn't been immune from it. GP services, here are the same, apparently you need to be dying to see someone, luckily I don't go more than once every few years, my real problem, is seeing a bloody dentist in an emergency.

[vectra666]

Hope you and your family get better soon take care daryl.
I think all doctors are the same these days, you need to know three weeks in advance when you're gonna be ill, if I phoned today for an appointment it'll be February before I get in.
Now when you call after 50 attempts to get though at 8.15 the time everyone try to get a appointment for the day ( not joking here)
the receptionist needs to know what's wrong with you and if it's deemed serious enough then you goto the next stage.
Which then you get a phone appointment usually waiting six hours plus to get normally when the Dr's are shut for the day, then if you're lucky it's onto stage three the appointment lol

Edited by vectra666, 02 January 2017 - 11:58 AM.

[aaamusements]

Oh dear Daryl, you do have a lot on your plate.
 
I can very much appreciate looking out for your mum, but you do need to look after yourself. I was concerned about my mum, who was in her late 50's and not that well, when my nan was ill in her 80's and my mum, was looking after her and running herself ragged. I'm sure some of the younger family members will be concerned about you also, not looking after yourself.
 
I think many of us, have had that nasty hanging around flu/cold, even The Queen, hasn't been immune from it. GP services, here are the same, apparently you need to be dying to see someone, luckily I don't go more than once every few years, my real problem, is seeing a bloody dentist in an emergency.

The thing is most of the nasties that have been going round have been viral. There's simply nothing that a doctor can do, even if you feel like you're dying at the time!
Everybody really needs a decent thermometer at home. If your core temperature is normal at 36.5 to 37.5 degrees c then you just have to keep hydrated and warm, and stay indoors.

Hope things are looking up Daryl, did you go on that new medication in the end?

[stardust]

Hope things are looking up Daryl, did you go on that new medication in the end?

 

Hi mate... No I didn't - I decided to stick the 'better the devil you know' - or 'if it ain't broke, don't fix it' mentality...

 

Meaning there were a lot more unanswered questions to the trial than was comfortable for me after an interview for it. Promising yes, but to me it seems that the treatment is more for those who have only just been diagnosed within weeks/months - not five years down the line.

 

I've been doing OK I reckon ( some of you may not agree ) on Aricept to keep me on track - it has done its job since I started the medication straight after my diagnosis nearly 6 years ago now - it has held it back significantly, compared to my mum who was never given the drug until it was far too late after diagnosis (blame Lincolnshire NHS services there).

 

So I decided, after the interview with the trial team, and especially after talking to my immediate family and support team, not to go ahead with the trial.

[stardust]

Former Prime Minister David Cameron as been made President of the Alzheimer's Research UK...

 

http://www.alzheimersresearchuk.org/ 

 

As politics isn't liked here... I couldn't possibly comment 

[gordon1988]

Aww Daryl so sorry to have heard this

 

it only occurred to me that one could  emulate fruit machines when i stumbled upon this good ship in 09

 

you were once of the driving forces  behind my interest in old machines

 

and like you say FME FOREVER

[stardust]

I have been having a foot complaint called plantar fasciitis. It is very painful and after three months of trying anti-inflammatory medication (and a course of tablets to cover the heartburn they give), along with a gel heel instep for both my shoes, trainers and slippers, and foot exercises, it hasn't improved.

 

Today I have had to have the next course of treatment - a steroid injection, with the needle buried deep into my left heel, whilst my GP twisted the needle around to get the steroid fluid all around the plantar fasciitis area. It was extremely painful, the foot is very sore, tender, bruised and swollen where the needle has gone in but hopefully, my GP says, it will only last a couple days and I'm to rest as much as I can in those 48 hours.

 

 17626404_10155291898351802_3427369772698183044_n.jpg   63.35KB   0 downloads

The swelling and bruising on my heel after the injection with the needle point of entry at top!

 

The long-term affects of it however I hope will be worth that excrutiating 1 minute whilst the injection was inserted into my foot and it will help me to get a little more mobile, as I don't like being told that plantar fasciitis is 'wear & tear for my age' - I'm only 51!

[bri365]

Does this mean that you can no longer do the riverdance? Seriously I hope you are well apart from the sore foot. Take it easy and put your feet (or foot) up.

[barcrest junky]

Ouch.  Hope you feel better soon.  The injection certainly worked for me. 

[ricardo de ponsa]

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[stardust]

Sixth year diagnosis anniversary...

 

It is six years ago today that I went to the QMC hospital in Nottingham and was diagnosed with early-onset Alzheimer's Disease. 

 

When I wrote to you all on my first post in this thread on that day, I really thought by now that I would be in 'ga-ga' land and very much like my mum is now.

 

But given the fact that I was put on medication for the condition straightaway, and also knowing what entails with this illness, I took steps to try and safeguard my future as much as I could, and got support care in place. It is needed now and has been increased to 6 hours... But I'm still here, able to type and communicate with you all, remembering the lovely friends that I have made on the FME forums and still moaning! And to boot, we have seen the release of the new MFME emulator which we all thought was going to be wishful thinking... You see, my plea might've made a difference in my first post!

 

Here's to the next six - hopefully!

 

Love and peace,

 

Daryl x

[ricardo de ponsa]

Moaning is what us O.A.P.s do best !!!!!!

Good to hear from you Daryl and hope you are managing OK, can't believe its been 6 years since you were diagnosed with dementia. Well done on getting this far and hope you manage another 6+ years and more

with all your faculties intact.

 

Best wishes

                           Ricardo.