Can someone explain please

[heather]

as you no i'm not up on medication
But reading all the post's on hear, i don't no how you can all keep so well

I can't understand why your doctor's, put you on so many, different one's at the same time
I would have thought there where to many variables, to no which
is the one causing the problem
I hope Geraldine doesn't mind me Quoting this

amantadine. When he took it at first he had some side effects. He was hallucinating. The consultant reduced it to once a day. It's hard to say what side effects the amantadine actually causes as he is also on madopar 6 times a day and has just been introduced to azilect once a day.
I would have thought, they needed to find out first what each one was causing
Like i said i'm not up on Medication, so they may be a good explanation

[Diane]

Heather, it does seem odd that he is on so many meds so soon. My husband was put on just Sinemet 2x per day at first. As his condition progresses, dr. added Mirapex after about 5 years. A couple of years later, he changed from Sinemet to Stalevo. He recently added Parcopa as needed (melts on the tongue and works really fast, for those times when the meds wear off and you want to be "on" again quickly). So, he is on 3 PD meds, after 9 years.

Of course, my husband takes other meds too, besides the PD meds listed above. He takes antidepressant, pain med, prostate med, a "wide-awake" pill when he needs to be alert.

Very good question, Heather.
Diane

[heather]

Thanks Diane
As Jim's mimics PD he has only ever been on Sinemet Pluse, for the shakes
2 types of antidepressant's, one for depression, and one for hallucination's, Vitamin B to go with the anti depression ones and luck never had any side affects , so i was wondering why so many
I understand why your doctor's say for you all to take your medication as you need it, and that's because they have no idea
themselves, but it must be awful, having to make this decission
knowing your Doctor has no idea , hope that makes sense

[susan wheatley]

hi heather, my pd nurse did try to explain why i need three differant types of med its just getting the right combo i think she said one helps the other, the agonists are the ones that mimic leverdopa, where as the ones like i take which is madapar and someone correct me if i am wrong actually replace the dopermine another one is sinamet i think hope i am right thats the way it seemed when she was explaining it to me maybe am wrong dont know wheather this helps or not god bless susan.

[heather]

Hi Susan
hope you are well
Yes, but how you all get your head around them i'll never no,
I have been nursing for almost 42 years, and not had anything till now to really have any contact with PD, and only these last few weeks to start to understand it,which i don't think i every will completely,

thank you for your help

[susan wheatley]

hi heather, glad to help or at least try their are so many different types its hard to explain how each one helps the other to work i dont think the pd experts know hope you are both well today god bless susan.

[heather]

Thanks Susan
I think you are all the experts, and would rather listen to all you, than try and look it up on the net, as they don't seem to no,
Don't no if you have tried looking, they never explain , just put a load of scientific pictures and so called research figures etc etc

[susan wheatley]

heather you are so right the experts on the internet do use words sometimes even they dont understand the parkinsons disease soclety site is quite good for information and updates you,ve probably tried it hope you have had a good the two of you going to bed soon got to be up at 5.15 to pick my husband up from work oh joy speak soon susan.

[heather]

Thanks Susan
Night night, sleep tight
catch up soon

[MargieB]

Thanks Susan
I think you are all the experts, and would rather listen to all you, than try and look it up on the net, as they don't seem to no,
Don't no if you have tried looking, they never explain , just put a load of scientific pictures and so called research figures etc etc

HI Heather,

You are so very right! The experts never explain and if they try to, they use language that only another 'expert' can understand. It would be a pleasant surprise if an expert in the field of PD would think about all the Parkinson's patients and their carers and write in a way that we could all understand what he/she is saying. That way we would know what is up to date with PD.

Thankfully we have Lianna's books. They are the BEST I have ever found and read and MOST HELPFUL.
Love,
Margie :)

[heather]

very true Margie
with out Lianna we would never have meet such nice educated pd people, and her book and e-mail's are a god send

[heatherwilmot]

HI Heather,

You are so very right! The experts never explain and if they try to, they use language that only another 'expert' can understand. It would be a pleasant surprise if an expert in the field of PD would think about all the Parkinson's patients and their carers and write in a way that we could all understand what he/she is saying. That way we would know what is up to date with PD.

Thankfully we have Lianna's books. They are the BEST I have ever found and read and MOST HELPFUL.
Love,
Margie :)

Hi Heather, Margie and everyone else who has posted. Agree about the books. You might recall my first posting was re medication, after the initial hello's. i had never been told to take sinement separately from Requip (ropinirole), also how long I should leave before taking the next dose, or what symptoms were likely, all anyone ever says is 'we are all different' and only sure thing is. 'no two are the same'. I only know that the Requip makes me feel very peculiar about 20 mins after taking it and I yawn for about 30 mins. Can be embarrassing, anyway long story short 'could have killed yourself etc' but I felt bad when taking them and was given no explanations. I now have a more settled regime, still not entirely happy, but feeling generally better, although to-day for the first time I have fallen over, twice. hurt the bottom of my back and banged my head, t add t all the other aches and pains I have, so although I am feeling better in myself my body is letting me down. Oh well, onwards and upwards.
Hope you are all feeling better for having chatted about medication. I also don't like taking too many pills, I wonder how each pill manages to find the bit they are supposed to be treating. i have visions of a number of diffferent colours pills etc standing at a cross roads in our body discussing which way they have to go. Well better to laugh, especially after receicing Liaines latest email. Very true that I do feel better when I am happy, and a good laugh never goes amiss.
Good luck to all Heather (Prill)

[susan wheatley]

hi heatherwilmot, i started meds last year and was taking requip while taking the lower dose i felt ok but as the dose went up i was really unwell lost my appetite and ended up loseing 2 stone and i found them difficult to swallow felt like i was choking which would last for hours after certain doses, and i never felt well while taking them eventually i was taken off them i now take madapar, have the patches, and selegiline, which makes me feel better but doesnt always work when it does its great i feel nearly normal for a while, maybe you need to talk to your pd nurse about a different combo of meds, speak to you soon susan.

[heatherwilmot]

hi heatherwilmot, i started meds last year and was taking requip while taking the lower dose i felt ok but as the dose went up i was really unwell lost my appetite and ended up loseing 2 stone and i found them difficult to swallow felt like i was choking which would last for hours after certain doses, and i never felt well while taking them eventually i was taken off them i now take madapar, have the patches, and selegiline, which makes me feel better but doesnt always work when it does its great i feel nearly normal for a while, maybe you need to talk to your pd nurse about a different combo of meds, speak to you soon susan.

HeatherPrill
Thanks Susan, nice to know there are some who listen, I have learnt more from these chats than 8 years of visits to PDS and Doctors. Off to bed, after midnight, busy day tomorrow.
Night all. Heather.P

[Juanita Mullin]

Hi Margie,
I have read a PD book that does explain what words mean. It is written so the patient can understand. The book is "The Parkinson's Disease Treatment Book" by J. Eric Ahlskog. Everything is very carefully explained. I believe anyone would find it very helpful--at least it has been to me. The hospital here has a library. That is where I found it. Hope this helps.
Juanita

[susan wheatley]

heatherp, thats what we are all here for to listen and to help if we can. god less susan.

[heather]

Hi Margie,
I have read a PD book that does explain what words mean. It is written so the patient can understand. The book is "The Parkinson's Disease Treatment Book" by J. Eric Ahlskog. Everything is very carefully explained. I believe anyone would find it very helpful--at least it has been to me. The hospital here has a library. That is where I found it. Hope this helps.
Juanita


Hi Juanita
thank you for that, it sounds good, as the more i goggle the more confused i get
Thank you once more

[MargieB]

Hi Juanita
thank you for that, it sounds good, as the more i goggle the more confused i get
Thank you once more

Hi Juanita,

Thank you very much for the title and author of the book on PD. I hope to get a copy for us. Tony and I don't like to read too many things on the Internet. They can get 'out of hand' so to speak and do not help at all.

It was so good of you to get this information for all of us who would want it.

Thank you again.

Margie :)