MEDICATION

Jb and Marie..

I'm on Stalevo and my trouble is i could sleep for Ireland anytime day or night..so mornings i guess I'm at my best after 2pm i get tired so have to nap..Jb my smell disappeared a while back and it's funny you mentioned an odour as every so often i get a strange smell i even asked Seán if he could get whiff..his reply..'no your getting old mum..

Take care all
Em x

My sense of smell disappeared a long time ago. Sometimes though I have an odour, never a good one go through my brain like I just sniffed it. I know its imagined but it seems so real that it almost makes me gag. Happened to me 5 times yesterday and my wife has added it to her list titled: Reasons Why I Think John is Going Crazy.

Anyone else ever get this happening?

Hey MB, it is the sleepiness of requip that is worst. jb

Just been scrolling through your posts. They make interesting reading and I would think contributions to this thread should come thick and fast. My Meds history is pretty tame by comparison. Started on RequipXL 8mg daily about 9 months ago. The first 6 months were a roller coaster and although speed and accuracy of movement improved dramatically all my other functions either shut down or went into chaos mode. I hadn't been prepared for the severity of side effects experienced. These included nausea, cramps, sleeplessness at night and total fatigue by day. I could hardly keep my eyes open. Worst of all has been the non motor problem of bladder dysfunction which has left me with 'urgency' (no incontinence) and needing the loo at least two or three times a night. I swear I never had a bladder problem until I started the Meds .My neuro referred me for gyny and urology tests. So far no answers other than it's a Parky problem and I'm just unlucky! Otherwise I guess I'm doing well. The Meds have made no difference to my right side tremors (gradually spreading to all four limbs) but they are only noticeable when I get anxious/excited . Daily exercise has helped to calm things down so all in all it's manageable. Now able to cut food, brush my teeth, wash my hair etc which I couldn't do this time last year. I take each day as it comes and try to lead as normal a life as possible. I listen to my body now and take a nap of 20 mins or so after lunch. I've always been a whirling dervish and if anyone had told me I would be napping at my age I would have thought they were joking me. Just as well we don't have crystal balls.
I generally feel that PD doesn't get the kind of publicity it so desperately needs if a cure is to be found. At best, it tends to focus on how well PWP are doing on meds. All of us are different and many are really struggling with the symptoms. I'm pretty hopeful that in most of your lifetimes one will be found and in the meantime I'd be grateful for anything that will slow things down

I am on requip but hate the sleepiness. I don't take as much as I used to but I feel the rigidity and slowness creeping back in. I guess it is time to try something else. I have been treated only with agonists for my symptoms.

THE APO-GO CONTINIOUS INFUSION PUMP

The apo go pump is a small pump that is worn around the waist. You set up your pump each morning by attaching a syringe to the pump and filling it with medication. You then attach a line to the syringe, on the other end of this line is a needle which you insert into your abdomen. you then switch your pump on and it gives you a continious flow of medication throughout the day. This was a great help to me because i was having off times lasting about 2 hours 2 or 3 times a day. Now when i go off i just press the bolus button and it gives me an extra shot of meds and will have me back on my feet in less than five mins. It also come in the form of a pen that you can carry in your pocket and if you find yourself going off you can give your self a quick injection. The pen is known as the quick fix and its effects would not last as long as the pump. This medication is only given when everything else has been tried and as far as i know there are about 40 people using it in Ireland. You have to go into hospital to have whats known as the apo go challange that is to see if you are suitable. I probably sounds like alot of hassle but 5 mins sets it up in the morning.

PS IF ANYONE WANTS TO KNOW ANY MORE ABOUT IT JUST ASK OR SEND AN E MAIL

Patsy wrote:Hi Ems, Lucy, Katie, Bigmac,& Jb I have Pd for 17 years, diagnosed 12 years, I started off on Requip it did not do anything for me, I was not able to dress or undress, a gust of wind would knock me down, I could not put butter on a slice of toast or cut up the toast.
I started on Stalevo, and from the very first day of taking it I had my life back again.

Bigmac I never heard of the Duodopa Pump, or Lucy's infusion pump.
Lucy could you please tell us more about your infusion pump.

I had an MRI scan and a thyroid scan three weeks ago, and since then my medication is not working as it used too, even though my dr assured me the scans would not interfere with my meds. ( They did).
So to anybody out there who may be having an MRI scan, take some time to think about it.

Now Jb ----------- You stop this nonsense talk----------- I think I am the Oldest parker here, so if I say "YOU STAY" you stay, isn't that right girls.

Good/night/morning. to all-----Patsy !!!!!!!!

Hi there folks..Bigmac i also started on requip about 5years ago didn't work for me,i am now on Stalevo its good only i sleep more , Patsy sorry that your meds are not working as good now...Dear jb i think you better listen to the girls..
you ain't going anywhere..'YOU STAY'

Take care everybody
Ems

Hi Ems, Lucy, Katie, Bigmac,& Jb I have Pd for 17 years, diagnosed 12 years, I started off on Requip it did not do anything for me, I was not able to dress or undress, a gust of wind would knock me down, I could not put butter on a slice of toast or cut up the toast.
I started on Stalevo, and from the very first day of taking it I had my life back again.

Bigmac I never heard of the Duodopa Pump, or Lucy's infusion pump.
Lucy could you please tell us more about your infusion pump.

I had an MRI scan and a thyroid scan three weeks ago, and since then my medication is not working as it used too, even though my dr assured me the scans would not interfere with my meds. ( They did).
So to anybody out there who may be having an MRI scan, take some time to think about it.

Now Jb ----------- You stop this nonsense talk----------- I think I am the Oldest parker here, so if I say "YOU STAY" you stay, isn't that right girls.

Good/night/morning. to all-----Patsy !!!!!!!!

JB I forbid you to leave my vote is 10 out of 10 so there.

Hi BigMac and Katie. So great to hear from you. In Canada, we don't have XL requip, just plain old requi. My Doctor wanted me to get up to the max dose of 24 mg/day While getting up to that much I thought I was okay but I wasn't. Too sleepy, stupid and even daytime hallucinations. Now I take o about 10 mgs a day. Ditto the pump. WE can't get that either.

Have good days my friends, jb
thanks for the vote Katie

Hi Katie here, I have been diagnosed for one year now, with symptoms for the previous two years, but too stubborn to go to doctor. I take Requip XL, it has taken me almost six months to tolerate it.

JB you can have a yes vote from me anytime, we need some good storyteller to entertain us!

Hi Bigmac how are you I have had pd now for 11 years diag 8 I am 49. I have been on almost all the meds at present i am on the apo go continious infusion pump but i think the deodopa pump is different as far as i know i dont think you would have that long to wait when i was having my pump fitted it was just a matter of waiting for a hospital bed.Sorry I couldnt be more helpful

Hi. Been reading the forum for a while. My PDer is my husband, dx four years ago at 47. He had been on requip but came off it after a couple of months because of the compulsive behaviour. He has now been recommended for the Duodopa Pump and my question is; Does anyone have any idea how long it takes from recommendation, to budget approval to actual implementation. It is available in Ireland on the public health system (TG) but I just wonder how ling it will take?? I wish all our fellow PDers and their loved ones Good Luck on our respective journeys...

Hi everybody,

I take requip, it puts me to sleep if I am not moving. I have to keep active or else I grind to a halt without movement and I slump over onto the keyboard and my nose types a long string of xxxxxs across the screen until I pull up, glad nobody saw that and erase those xxxxxs and repeat it again getting sleepier and becoming still and quiet until there is nomvement but my quiet snoring and sometimes this forum acts like it is on too much requip and nobody has much to say and I fill in with a bunch of nonsense just to help, maybe I hinder things, but with all these members somebody should have something to say. Sometimes I would welcome even a "why don't you stop typing and keep out. C'mon the Irish people I know over here talk all the time. So what do think? jb

maybe today is the day I get asked to leave, make your vote count!

Most people believe that parkinsons only affects people in their seventies and eighties but the truth is it does affect younger people, I was 39 when i noticed my first symptoms. People that have no real dealings with pd can connect parkinsons and tremor, but they would have no idea of the other symptoms such as slowness or movement or dyskenesia(too much movement) the stiffness the sleepless nights or suddenly falling asleep. The mobility and balance problems the depression the compulsive behaviour speech problems problems turning in bed the nightmares the list is endless. Some of these problems are side effects of the medication. I think it dosent get half enough attention in the papers, during parkinsons awareness week I sent an e mail to our local paper asking them if they would do a bit on parkinsons, they never bothered to get back to me. Mabey through this forum we can give people with no knowledge of parkinsons a bit more insite into the condition.


Hi Patsy,
I was on the patch about 5 years ago and it dident agree with me atal. At that time there were 4 different strengths. I started on the lowest after a few days I felt terrible neuro said stay on you will feel better on the next dose and so this continued until I reached the highest dose by this time I couldnt leave the house at the end up I insisted that I come off the patch and that took another 4 weeks. Everyone is different and the patch is probably a lifesaver for many people

Hi there,your post is under right thread Jb thanks Katie.. I was diagnosed with Pd about 5 and a half years ago though symptoms were there 2 years before..I suffer with left hand tremor and in recent months my chin and head has started..

I was on Neupro patches for a short while only stopped because they didn't stick well..

I am taking Stalevo 75g 4xdaily, Eldepryl 5g = 1 each morning.
Medication does help only sleep wise well I'd sleep for Ireland as they say..
em

Hi, I'm john from Canada. I tak Requip and Azilect. I have right side rigidity. A couple months ago, my motion doctor had me up to max dosage of 24 mg a day. I started some halucinating and drop on the spot sleepiness. We scaled it back, symptoms never changed that much but sleepiness never got better. Now I take only about 12 mg a day. My hand maybe isn't as quick or strong as when I was at 24 mg, but that wasza a too big of price to pay.

I am left with a question. I talked medication as Katie titled this thread. Was I supposed to?

jb


Hi Ems, Ann, JB, lucy & Katie
It is so sad, we have 70+ members registered in this forum and only a few contribute. We are all in the same boat here, whether we like it or not, but we must get on with life.
Wouldn't it be nice to hear from others, on how they are coping with PD, what medication they are on, how is the meds, workng for them, etc.etc.
For instance I am on the NEUPRO PATCH, I would love to hear from somebody who is also on it, is it working for them,? are they allergic to it,? do they think it is a nuisance trying to remember it every night. what works for one may not work for others.

Lets start a section for MEDICATION, hopefully someone, somewhere, will tell us about their meds, or ask a question, (they can if they wish tell me to mind my own business).

Hope ye are all on a good day, forget about the bad days.
God Bless, take care.

Patsy !!!!!!!!!!!!!!!!!!!!!!!

I could'nt agree more patsy, its up to each of us to make a contributation however small, and however we feel, its good to know that there is someone else out there who feels some empathy with us

Come on folks, lets be hearing from you ????? KEEP OUR FORUM GOING.