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Posted 5/30/2007 1:26 AM (GMT 0)

I am so happy to find a site with people who understand my ups and downs and frustrating moments.  I have had Parkinsons for 10 years now and am turning 5o in 6 months.  Needless to say, that is depressing in itself but I m very busy and work45-50 hours a week.  I have to learn how to destress and stick to an excercise program.  I am on azilect and sinemet,but I am going off the azilect due to rapid weightgain.  Any advice or comments are greaatly appreciated!!

Have a good night!

Posted 5/30/2007 3:02 AM (GMT 0)

Hi, It sounds like you are doing really well managing your PD and to be working such long hours is inspiring. I have just been diagnosed with Early Onset PD so finding this site has been great. As I am new to all this any information or advice would be greatly appreciated.

Wishing you well. 

Posted 5/30/2007 3:04 AM (GMT 0)
Hi Almost 50
I am a little older than you but I too keep busy. My best advise is to keep moving. Listen to your movement disorder specialist and don't give up.
I started on sinemet 1 1/2 years ago and it really helps me. I ride my horse, which helps my balance. In fact My friends and I rode in a local park for 2 hours yesterday. Take the time to take care of yourself. When I need to unwind I ride my horse, walk or listen to music especially on the way home from work.
Welcome to the site. It has helped me.
fiestytex
Posted 5/30/2007 10:41 AM (GMT 0)
Almost 50,and Ruby Rose

Welcome to Healing Well.I hope you find us to be a valuable site for both information,and support.Seek all the help you need,and in turn help us with your experiences,trials and tribultions .We are all going down the same path,and as was so well put by fiesty tex"keep busy".Wish you the best.Ed
Posted 5/30/2007 6:12 PM (GMT 0)
Welcome to the newcomers.  My husband is 76 and has had PD almost 25 years, during which the early symptoms were not dx.  Looking back now, the drs say that had they known more about PD he would have been dx but not RX anything as symptoms were not interfearing with his daily life. 

He loved being outside after being in an office all day, and relaxed in his garden.  We had those plastic yard chairs around the garden and yard, and when he was overcome with weakness, or tiredness, he sat down until it passed, then got back up and literally forced himself to be active doing what he loved.  He drank lots of Gatorade and Ensure. Even when he could not walk without a walker, he could balance behind the tiller and "work" the soil.  I am convinced that this is what kept him going independently as long as he did.  He now needs help with all activities of daily living.

You are all right in staying active, and being informed.  Keep up the good work!

Posted 5/30/2007 10:51 PM (GMT 0)

Eureka,Your post serves as an inspiration to me a youngster at 63

I also use the chair to rest on any job including cooking ,fishing,gardening or what ever.Just gotta keep going no matter the speed or how you do it.I will get it done may take a week to do what I use to be able to do in 4 hrs but I do it between rests and naps.I found that portable fold up chairs work well as I can pack them with me.They only weigh a couple pounds and come in carrying cases that you can sling over your shoulder.They can also be packed on a walker.Wish you the best Ed

Posted 6/1/2007 1:34 AM (GMT 0)
Being active is the key that keeps me going. I'm still working full time as an administrator in a residential care facility for the elderly. I'm the activity coordinator and this helps me a lot to maintain my mobility and independence.
Posted 6/4/2007 2:53 PM (GMT 0)
Hi, I was diagnosed 3 years ago and have been on mirepex 1Mg, but am now noticing weight gain, 10 lbs in a year, any one out there with same problem,???? thanks!!!!
Posted 6/6/2007 11:10 AM (GMT 0)
Sharon,Welcome to Healing Well.I am on mirapex .75 2x.I have not had a problem with weight gain,but I do have a problem with my feet swelling which I attribute to mirapex.Wish you the best.Ed
Posted 6/6/2007 9:04 PM (GMT 0)
Hey Ed, what with the feet swelling? As you know I am on the neupro patches and they are new -ish and signs of adverse effects are only just appearing. I saw my neuro last week and pointed out first signs of odaema with vein threading and eh said that shouldn't be a sign of pd. I have osteo arthritisbut it shouldn't be that either as it is concurrent with me starting neupro. Any ideas or explanations please will be mosty welcome. Thanks.
The Bear
Posted 6/7/2007 1:32 AM (GMT 0)
Bear,How you doin?My main thought is to keep an eye on your new med for complications.It is in a class of pd drugs known as an agonist,and apt name as none seem to be free of various side effects.oddly enough a listed side effect of mirapex,a popular agonist, is arthritis.Any thing out of the ordinary should be reported to your doctor.Even with all the side effects of these meds many of us would be lost without them.Best to you.Ed
Posted 6/13/2007 3:00 AM (GMT 0)

Hi, I'm a new member with Parkinson's (I'm also new to chat rooms - so I hope this gets through)

I suppose at present I'm most concerned about coping psychologically with this long term condition and I'm going to read all the posts for ideas.

Not sure what else to say, but hello all of you.

Posted 6/13/2007 3:23 AM (GMT 0)
Bear, Am I recalling correctly?  Aren't you in the UK?  I just found out about the patches and I understand that they have been available for awhile in Europe, UK and Canada.  I thought that it sounded like a great idea, but apparently it isn't THE ANSWER.  Is there anything else that you can tell us about the patch?  Thanks.
Posted 6/13/2007 4:18 AM (GMT 0)

To Skategirl

Living with PD is not easy. The most important thing is your attitude. How will you accept the disease and live with it. Maintain your medicine to the lowest dose that's work for you. Do a lot of walking and exercises. Eat more vegies and fruits. Always be positive. Enjoy life. Don't take PD as an obstacle to your life. Stay active, mentally and physically.

I have PD for 16 years but still working full time, still able and independent.take care.

Posted 6/13/2007 10:40 AM (GMT 0)
Skategirl,Welcome to Healing well.Minmark has some excellent advice.I would add that you have pd but it doesn't have you.Hope you learn from this forum.We are here to help ourselves,and each other.So don't be a stranger.Best to you.Ed

Posted 6/13/2007 7:51 PM (GMT 0)

To Minmark and Yekkimo,

Thanks for the welcome, I'm so glad to have found this site, knowing there are others "out there" who are willing to share their knowledge and experience.

More later,

Skatergirl

Posted 6/13/2007 8:08 PM (GMT 0)

To Sharon,

I too am on Mirapexin (1.5mg) and have also experienced weight gain. I've wondered whether it's due to being less active or a side effect of the tablets. Another thing I've noticed is my taste for food has changed from savoury to sweet.  Any input from anyone else?

I am also experiencing swollen feet which my PD nurse says is an effect of the tablets.

Skatergirl

(a fellow new member)

Posted 6/14/2007 12:30 AM (GMT 0)
I'm taking Miraapex since 1997 when it was approved by the FDA. I started at 1 mg and now after 10 years I'm taking  4 x a day. It helps me a lot. Before, without the Mirapex, they could not understand my handwriting, it's curly and becoming too small. But with the help of Mirapex I was back to life. I'm back to work full time, and can do everything that I used to do before. Thank God I don't have the problem of sleepiness, swelling of the feet and no weight gain. The key : stay active, walk a lot and learn to manage your medication according to your needs. 
Posted 6/14/2007 12:43 AM (GMT 0)
skatergirl.mirapexin aka mirapex in the U.S. Does cause my feet to swell,but I feel the benefits of this med outweigh the side effects.Get your feet up when you sit,and that will help.You can also wear support stockings which also helps .This is hard to do in the summer when I wear loose fiting sandals to give my feet room.if you are getting control of your PD with mirapexin,and no sinemet all the better.One less med.Wish you the best.Ed ps Work with your neurologist on your meds there are other effective agonists besides mirapexin,if this doesn't work.
Posted 6/21/2007 10:47 AM (GMT 0)
Hi Ed and riviera. yes I have been on the patches for nearly 9 months now and I am managing relatively well. Still have some stiffness of movement n the thighs and ankles but overall no side effects other than a very mild swelling of my ankles at the end of the day which disappears overnight and ofcourse the ubiquitious patchwork quilt effect on your skin. It is important to keep the areas well shaven and well lubricated. Iuse a mild cortisone cream when the patches leave a raised welt - usualy because I have left it on too long - and also a moisturiser. I use my thighs,armsand backs of shoulders to adhere them - they won't stay on parts of the body that crease in daily use but Ifind that they do stayon in the areas mentioned. I saw my neuro recently and he felt that as long as I am happy on them he will stay well out of it. He did mention that there was a mono agonist in a one a day pill but I forgot what he said it was. My right hand is notmuch good to me intemrs of typing as you can see - my middle two fingers have little coordination and do what the fingers do generally but overall, so far so good. But as you always say, Ed, everybody goes at their own pace and has unique experiences with the meds. We can only pass on our xperiences.

regards

The Bear  

Posted 6/23/2007 10:29 PM (GMT 0)
Thanks for the info Bear.  I've just returned from seeing the big guys at Shands which is at the U of Florida.   They were extremely nice.  I have many e-mail messages and this is one of the first, so apologies if my answer is more appropriate in another place.  I did ask about the Neuro  (or was it Neupro?) patches and they were not sure when they would be available here or if that would be the name that would be used.  Their understanding was that the hoped for benefits, a more even administration of the medication, just didn't seem to be happening and the side effects remained the same.  In other words, if you find it easier to use, go for it, but otherwise there probably isn't much difference.  I have not asked you or anyone else about price, but that will probably vary so much from place to place and depend so much on your particular health plan that we will just have to wait until the patches show up and then check on the price.

Posted 6/24/2007 8:35 AM (GMT 0)
Bear here: all  know is that i don't seem to get the major side effects some of you guys get but i haven't been on them for that long. As for the cost well as you know we only pay a nominal $10 per prescription item but Ido know tht one months supply cost my GP [all doctor's here manage theirown drugs budget which is worked out according to their patient list] is $200 per month's supply at the current exchange rate. My prescrption s two months worth at a tme so I only pay $80 ish per annum for my neupro. In fact I am one of the minority of people who actually pay for their scripts - only about 20%. There are so many exemptions.

I m aware of the arguments about cost effectiveness etc but like Billy who posts occasionally, I no doubt could have a more effective drug in tablet form but I'm prepared to hold off on theheavier stuff for as long as I can, probably until after I retire the end of 08 so that I canhave a better quality of life when I retire - that's the theory annyhow. 

I think the arguments about the realleffectiveness of the patch will continue for some time until they have been in common usage for long enough to make a realistical comparison with other more traditional meds but for someone like me who forgets totake taablets a one a day patch does the business. yeah I am also very aware, reading this thread and forum, that my progression rate may be muchslower than most judging by the 'where they are now v how long they have had it' equation and that the patch may not be suitable for people who maybe have had pd possibly years before dx. There isone posting website here in the UK where one reads of GP's taking years beforethey refer patients to a neuro - years in which people in some cases have thought suicidal thoughts for lack of knowing what is wrong with them. I was very fortunate.

 

Hope that helps gmt - but talk to your neuro as I am not sure if the patches are for swapping to from another med - more the first med in the chain. Ed might be able to throw more light on the theory of that. Hi Ed, how's the fishing going. [with me it's music].

 

regards to all

 

Bear

Posted 6/24/2007 11:31 AM (GMT 0)
gtm,Bear,Guess I'll wait on neupro as I,m on an agonist now which seems to help.Took me a while to get use to mirapex,and i guess it is hard to teach an old dog new tricks.From what i read similar adverse reactions occur with this agonist as does with others available.As for the benefits of the patch i use lidoderm patches for back pain,and have a devil of a job keeping them on.I did see a price of $ 445 for 28 neupro patches.Those with good prescription coverage would pay only a fraction of this.I would however talk to your neuro about this new med.
Fishing is currently slow because the water temp is still only 54F needs to get to 60 then the north atlantic produces.Enjoy your music Bear,and everyone stay well.Ed ps please ignore all typo errors .
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