Hello my name is Diana I live in Cornwall....

[Diana Mylor]

I am registering today to find out from other forum members which prescribed drug seems to work best in their experience. My husband Paul is my scribe (hello I'm Paul), my friend and my carer. I tried Aricept twice with a 5 month break - each time I had side effects - aching limbs, poorer memory and confusion coupled to emotion. I've been off it about 10 days and feel better - back to my old self - repeating phrases, forgetting things but my aches have gone and so have the tears.

Now i have Exelon patches - have read the possible side effect sheet and wonder if the 'cure' isn't worse than the complaint?! Of those out there kind enough to reply on your experience and how you rate the E patch? 1) for side effects (out of 10) and 2) the improvement in personal ability? (again out of 10).

I am 72, led an active life being in business with my husband for a number of years and now beginning to feel helpless in the face of what other people feel is best for me. I have a lovely Westie called Bobby who understands me entirely but I can't always get others to - please reply.

Diana Mylor

 

[sue38]

Hi Diana (and scribe Paul ) and welcome to Talking Point. I hope you find it informative and supportive.

I have no experience of Aricept or Excelon (my dad was prescibed Ebixa) but others will be along with their experiences. I think it's important to recognise that people's experience of a particular drug can vary. What works for one may not work for another.

This factsheet may help

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=147

 

[Grannie G]

Hello Diana and Paul

wonder if the 'cure' isn't worse than the complaint?

Sadly this was the case with my husband who tried Aricept for 4 months, had a couple of weeks `wash out` before trying Reminyl with the same effect.

It seems these drugs are a bit like a famous yeast extract, they either love you or hate you.

 

[jenniferpa]

Hi Diana (and Paul) welcome to Talking Point.

I don't have any personal experiences to tell you about (my mother had vascular dementia so no meds were forthcoming) but I'm sure others will pitch in.

One thing I did want to say - there are quite few posters here with westies (not me, I have a pit bull ) so in that you are not alone.

 

[nicoise]

Hi Diana (and Paul!)

Welcome to TP - I hope you will find support and information here - there's usually someone who can help out or just lend a listening ear.

My mum had Exelon patches - the low dose - and herself described that it helped "clear the fog" a little. I don't know if that phrase means anything to you, but the feeling of fogginess in her thinking was one of mum's biggest personal issues within her view of her problems. She had Lewy Body Dementia.

She was always very sensitive to any medications, always had to have the lowest dose, and would usually suffer many of the listed bad side effects. The low dose patches did not cause her any problems. When in hospital the oral tablets were substituted when they ran out of patches - disastrously. They gave her nausea and vomiting, and she felt dreadful. When after a couple of days this was rectified the gastric issues disappeared.

As to whether the Exelon made any appreciable difference to the way her brain worked functionally I couldn't say, and whether it slowed down any decline who knows, but she felt sharper and more alert - and as such were successful for her.

Best wishes

 

[robertjohnmills]

Hi Diana & Paul
Our experience was also hit and miss to begin with. The doctors originally started my partner on Sodium Valporate, it was supposed to offer mood stability. We found it a waster of time with no obvious benefits or side effects. Then they gave a trial of Lorazepam, this can effect the kidneys and you have to make sure you drink lots. But this gave backache, so we think it was not flushing out of kidneys properly and there was no benefit either! Then they gave us Ebixa (Memantine). This was for us the magic pill! No side effects and almost instant change for the better. Three years later it is not so effective but for early and middle stage Dementia I would recommend you ask your doctor to see if appropriate for trial.

 

[Eema]

Hi, Diana. I'm just about to start on Aricept. It's disconcerting to hear that it might make my fog worse. The doctor only warned about the possibility of an upset stomach for a week or two.

A friend of mine (with an undiagnosed form of dementia, they don't know what she has other than that she has shrinkage and holes in her brain) -- went on Exelon years ago and was able to leave her care home. She is declining again, very slowly, but still lives independently with a roommate who helps her with certain things. That isn't the average reaction, obviously, but it's good to know that it's possible.

 

[Diana Mylor]

" people's experiences can vary..."

Hi, Diana. I'm just about to start on Aricept. It's disconcerting to hear that it might make my fog worse. The doctor only warned about the possibility of an upset stomach for a week or two.

Thank you for writing Eema don't be afraid to ask to change your drug if you feel it is not working for you but it is important to experience it. I started on Excelon so no comment as yet but I will post my experience in the not too distant future. Good luck and be positive Best regards Diana

 

[Diana Mylor]

Many thanks for your welcome

This factsheet may help

and details on the factsheet I started on Excelon today so no comment as yet but I will post my experience in the not too distant future. Best regards Diana

 

[Diana Mylor]

Thank you for your yeastie comment

a bit like a famous yeast extract, they either love you or hate you.

I started on Excelon today so no comment as yet but I will post my experience in the not too distant future. Best regards Diana

 

[Diana Mylor]

thank you jennifer

there are quite few posters here with westies

I'm afraid I'm not very good on these replies - leaving out names - I'm sorry everyone. My sister's name is Jennie, I don't see her much nowadays but we were very close as children. Sometimes i think my westie thinks he's a pit bull but today he's been clipped and looks more like waif!

I started on Excelon today so no comment as yet but I will post my experience in the not too distant future. Best regards Diana

 

[Diana Mylor]

thank you for your welcome Nicoise

you and all the others made my making the decision to try the Excelon patch that much more a positive experience - we particularly appreciated your sharing your experience - thank you

kind regards Diana (& Paul)

 

[Diana Mylor]

Thank you for your comment Robert and responding to my first post

Then they gave us Ebixa (Memantine). This was for us the magic pill! No side effects and almost instant change for the better. I would recommend you ask your doctor to see if appropriate for trial.

I have begun the Excelon today but I will ask my doctor or nurse when I next see them. Obviously no comment on Excelon as yet but I will post my experience in the not too distant future.

with Paul's help I will be reading other posts and perhaps, like you, try to lend a helping word but I think i have a lot to learn
all the to you and your partner Diana

 

[Izzy]

My husband was on Exelon patches but they made him quite itchy. He was put on Exelon capsules and has had no bad effects. Good luck. x

 

[carpe diem]

I am 72, led an active life being in business with my husband for a number of years and now beginning to feel helpless in the face of what other people feel is best for me. I have a lovely Westie called Bobby who understands me entirely but I can't always get others to - please reply.

Diana Mylor

Hi, Bobby does not have any expectations of you, he does not argue or try to reason with you. People do all these thing to try and make your life better but it often ends with negative pressures. I really believe in a book called "contented dementia" which tries to make a present of the past rather than constantly forcing a now.
I just hope we will one day all be more understanding.
I have a greyhound/lurcher called George he is a ray of sunshine, we met a 12 week old Westie out on his first walk yesterday he was soooo cute. Bobby must have been a cutie pie as puppy up to all tricks. x

 

[Diana Mylor]

excelon patches

thanks izzy, no irritation yet but the shoulders are aching again after only three days - hows your husband? Di

 

[Diana Mylor]

whoops - big Bobby or all (not so) quiet on the Westie front...

I have a greyhound/lurcher called George he is a ray of sunshine.

Thank you for your reply CD and your splendid picture of George. I'm going to get a copy of Contented Dementia and thank you for suggesting it. I was going to reply sooner but couldn't quite get the hang of uploading the pic of Bobby - trouble is he's a bit big!!

Westies are bright, intelligent and amazingly loyal to one person but they are incessant barkers - i love him dearly but there are times...

BUT he's still my only confidant

Di x

 

[scarletpauline]

Hello Diana and Paul

My daughter is called Diana, sometimes people call her Diane and it irritates me! Mostly she is called Di.

I have resized the picture of Bobby, hope you don't mind. I did it using Paint. He is beautiful.

I made a mistake and called the picture George so if it shows up as George this is why

My husband has been on Reminyl for 2½ years, it seems to suit him and he is only progressing through the dementia journey gradually.

All the best to you both.

Love Pauline x

 

[Diana Mylor]

bringing bobby (& george) down to size...

My daughter is called Diana, sometimes people call her Diane and it irritates me! Mostly she is called Di.

I have resized the picture of Bobby, hope you don't mind. I did it using Paint. He is beautiful.

View attachment 28340 I made a mistake and called the picture George so if it shows up as George this is why

My husband has been on Reminyl for 2½ years, it seems to suit him and he is only progressing through the dementia journey gradually.

All the best to you both.

Love Pauline x

Thank you Pauline, glad to hear your husband gently progressing, I have only just started and so far i find it all a bit bewildering. Perhaps the New Year will bring a brighter future. Glad you liked the piccy, Paul took it, I expect he has a load more.
all the best to you and your husband Diana x

 

[eskimojo]

izzy your dog is stunning i have 2 whippets 1 greyhound and a lurcher pup......Diane the pic of your doggie is ssoooo cute......i dont know how to put pics on here but if you go to the group my pets keep me sane then you can see them all on there....they are my world to me x