Yes, that was my initial reaction Gus. However as it has already taken over 3 weeks to get these I will give them a go. I have an appointment with my consultant (who had to make the first prescription) in mid Jan so should know if they are working by then and can argue face to face for Azilect rather than generic if no improvement. As you say, it would be the best Christmas present if they do ! !
S
Gus, an after thought - I am planning to take the Rasagiline with my first dose of Madopar & Entacapone in the morning, Is that the best time?
S
yes this is the best time ,i take mine first thing in morning with my sinemet
Hi Andy
Just seen this post - I am writing to say how are you now ? does the Rasagilne still help with walking. I hope it's good news still as I am wondering if it could help me. Your problems sound very similar to mine would love to know how many meds you take now. I,ve had PD 2 years and already taking sinemet 25/100 5 and half pills, Pramipexole 3 tabs 3 x day sinemet Cr at night 2 pills, Entacapona 200 3 x day and the pills hardly help and can hardly walk 2, 3, and 4th dose very poor reaction.
Budsey
Hi Supa
Just seen this post along with Andy's post - I hope the Azilect has worked for you as I am looking for a new drug to help my walking which has become extremely poor. I read that Azilect is cheaper now because patient has ended. How are you now ?
Budsey
Hi Budsey
Sorry, just catching up with forum postings.
I had to stop taking Azilect due to side effects, since then have tried adding several other drugs but had to stop them all for same reason. None actually improved my walking, which is now really poor indoors. Now take Madopar, 5 x 100 daily plus Madopar dispersibles as needed when go really off and can't move, and 2 X 100 CR at night. And Entacapone.
It gets so difficult to think positive. My life is very restricted these days.
Wish there was a miracle cure !
S
Hello Supa - don't we all wish that with a vengence to have a miracle cure, oh to be back to the way we were before parkie decided to take over!
My walking is fairly good around home but is worse when out and about, the open space and when there are crowds my confidence goes at both. How long have you had to 'put up' with parkinsons for Supa?
Sheila
Hi Sheila
It feels like forever, as my life and expectations have changed so much.
Diagnosed 3 years ago and on meds ever since. First had very very slight gait hesitation about 9 months before that. This has steadily increased, especially when somebody is waiting for me to move, with freezing as well. Worst in crowds, queues, shops, unfamiliar places, etc. and at home, particularly in kitchen where all movement is stop-start and trying to carry stuff is a complete no no. Meds don't really help it, although they do ease going-off neck stiffness which can make moving even more difficult.
The one good thing is that I can walk out in the open ok, because then walking uses a different neuro-pathway, so I am told.
I really admire the way you plan ahead, and continue to go out and about, around the country etc. I have no confidence to do this now and I miss it terribly. I do try to think positive, although this posting probably doesn't sound like it
S
Hi Supa - try my best to keep going and not to sit and vegetate. Good days very few and far between but make the most of them, as you do! Had PD now for 7yrs and it does'nt get any easier you get to the stage where you have to push yourself and carry on regardless otherwise you get nowhere, and with all these new grandchildren coming along plus now one new great-grandson I hope I've got a long way to go!
All the best - Sheila
Hi Supa
Do you have a tremor.?The reason I am asking is I take a similar amount of Madopar (4 x 150 a day and 2 CR at night then one 50g dispersable )to get me going first thing in the morning. I don't have a tremor.For the last 6 months I have also taken a rotigotine neupro patch) of 6mg.Have you tried the patches.My main problem has always been my legs,I was diagnosed 5 years ago but definitely had symptoms at least 2 years before then,I will be 76 this year,still able to get around although the past couple of months have found things more difficult.
I was told non tremor parkinsons progressed more quickly than one with a tremor but don't know how true this is,perhaps I have been lucky and it has progressed more slowly with me.Hoping you find something that helps Supa.ps I have found the AlexanderTechnique helpful.
ANNE
Hi Anne
No, no tremor.
Have been thinking about trying Alexander Technique. Did you have lessons or teach yourself?
S.
Sorry, meant to say, patches are no good for me, I get allergic skin reactions.
S
Hi Supa,
I have had 10 lessons but hopefully will be doing it by myself.I got a couple of books from Amazon.
One is called the Alexander Technique in a nutshell, by Ailsa Masterton. I found this helpful
Anne
Thanks Anne!
S
Aye aye supa
how's things with you and this never ending problem with walking ? I am sticking to the bike much easier , hope you enjoyed your time in Cumbria it's nice there but it seems to get quite a lot of rain though , how's my old pall eddy ? We lost our old dog in October and last week I couldn't stand it any longer we got an 8 week old puppy lab retriever cross we named him. Buddy a wee bundle of joy great company he trots beside me when I cycle ( slowly for now ) that's all my news from the highlands of Scotland . A pat for edd and you take care sunflower tooraloo
Ian x
Hi Ian
That's great news. Welcome Buddy. We look forward to reading more about him. Start as you mean to go on, cycling with him will be good. Ed loves it. I have a folding bike (a Dahon) which I use to take him around the gravel trails near here when mood suits. Too hot for anything this week. Tomorrow should cool a bit, I hope.
We did have a good break in Cumbria. Ed had great fun with his doggy cousins and lots of walks. And, dry weather until the day we drove home, when it rained all the way, 7 hours with stops. Ed wouldn't get out of the car, crossed his legs instead. Doesn't like rain. But there is no way I could have coped without my partner, to help me walk and unfreeze, carry stuff, push the wheelchair up slopes, to take Ed out for the early morning and last nightly loo stops etc etc. He is soooo good with us both! Hate being dependent, but can't do anything about it.
I see neuro consultant tomorrow, he will be a bit surprised at my deterioration I think. Don't think there is anything he can offer to help walking. But I am still cycling, just not so far, and have to be so careful not to fall when I get off bike!
Have fun with Buddy. Keep posting!
S
Aye aye supa
well I hope you got on okay at your appointment with neuro , as like you S. all my problem is walking and I can't carry anything as legs won't go aw that's plenty of my moans , on a brighter subject wee pups doing well and living up to his name buddy as I spend a lot of time at home. Alone as wife works and he is great company he's a clever wee pup , hope Edds doing well , it's a strange thing this cycling I don't know how we can do it but we do ! Mind you I put a fair wee shake through the handlebars , aw enough , moaning , and ranting on but you are the only one on here that is so similar to my PD in all you describe . So am off to take wee buddy out for a pee and go to bed take care sunflower tooraloo pat for edd
Ian X
Aye aye sunflower are you doing alright ?
Hi Ian
sorry, I didn't respond to your previous post. I'm ok. Will post properly tomorrow, too tired now!
Pat for Buddy, and a tail wag from Ed.
S
Good. To hear your okay that's fine pat for mr edd . And wee buddy is trotting along fine with the bike . No worries about posts as long as edd and yourself are fine . Tooraloo
Ian x
