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Manolo

Your expertise of Parkinsons, what if?

19 posts in this topic

Because you have been diagnosed with PD, you probably have gained knowledge and a degree of expertise regarding Parkinsons.  I would like to tap into your expertise.  If you knew someone who was was a male, 63 years old diagnosed with Phase 1 PD 6 months ago with symptoms for probably 2 years, what advice would you give.  I have had a tremor  in my right hand for 15 months...one day the tremor wasn't there, the next day it was after an extremely vigorous day of splitting firewood...pill rolling to shaky, reduced arm swing to no arm swing over time.   I have some soreness in shoulders, but the tremor is the same, more or less since it started 15 months ago.

MD did an MRI; Neurologist diagnosed Phase 1 PD.  Neurologist prescribed an agonist, but I am holding off of meds because of info about side effects.  Follow-up appointment in 4 weeks.

Now is where I would greatly appreciate your input.  I have considered Azilect.  I am a blank slate with Phase 1 PD...please provide input.

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Exercise!  Rock steady boxing!  Bicycling!  Keep moving!  Keep involved with support groups, in person and on-line!  I am not so sure about meds, but I am convinced that exercise is critical.  Best of luck to you!   

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Manolo, Welcome the club you never wanted to be a part of. I started out using diet and exercise. When my symptoms became to bothersome I started out with Azilect. It helped a small amount. It relieved some stiffness, my mood got better, and did nothing for my tremor. After that my MDS and I decided to use Cardopa/Levodopa 25/100 AKA sinement. It has made the world of difference for me. With the azilect and sinement combo I am feeling better than ever. Nobody can tell I have any problems.

Remember results will very. One thing I caution is using agonist. They have a tendency to have the most side effects than any thing else.

Exercise is the best medicine.

Blessings

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Exercise! www.pwr4life.org is the program I have been doing and I'm holding my own! And dancing- my husband and I started ballroom dancing when my MDS looked at him and said "you need to take dance lessons"! My MDS said "keep doing what you're doing!"

I do take an agonist mirapex and have been successful with it. I also take selegine which is old school analect but my MDS prescribes it. I'm almost 3 years into my DX. 

good luck!!

 

LAD

Edited by LAD

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Yes, all of you are 100% correct when you recommend exercise. It is the best thing for you regardless as to your health. And if you still have PD symptoms, they'll give you more pills. But you do know that your PD is and will continue to progress and your doctor does not have even one pill that either slows or stems the progression of your disease. Looking for a cure? Forget about it!

Pssssssst. Want a treatment regimen real cheap? :lol:

https://clinicaltrials.gov/ct2/show/study/NCT02967250 and scroll down to "Purpose."

Questions? drop an email to mrfritz@comcast.net

Ciao,

Fred

 

 

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Exercise and Azilect.

I have seen 3 MDS, ALL of whom had said that "if it were them, they would take Azilect". THEY believe it "slows progression of the disease, even if the FDA won't let them say it".

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My doctor also gave me azilect from the very beginning, she participated in its testing and claims that there is a good chance that it slows the progression

About antagonists - requip helped me to delay taking levadopa by 2 years, and I didn't feel any side effects. Take into account that after 5-6 years of taking levadopa people start experience side effects  , so I think requip gave me 2 more "normal" years

About not taking meds - if you can't exercise because you take not enough pills.. I suspect that it is not a good situation

And - yes, exercising, staying active, not to feel sorry about yourself 

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I've been taking Azilect coming on two years in June. I use it as mono therapy...must do something because I'm not needing Siminet yet.

I exercise every day no less then 90 minutes and no less then 12000 steps per day..

D

 

Edited by Discovery
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Manolo

your message made me think again about antagonists vs levo/carbo ..

I heard or read (or both :)  ) that for the people younger than 60 (? ) it is recommend to start with antagonists , but for those older than 60 - with levo/carbo

will try to find the reference

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Natasha, Your research is based on old data. The latest research shows that starting levodopa early does not make a difference. It is progression of the disease that cause the levodopa to become less predictable. Recent studies have suggested that after someone has had the disease for 5-15 years and progresses to a certain point, a chemical in the brain called GABBA starts to get affected. With Gabba being diminished the brains ability to control dopamine responsiveness then is diminished causing dyskinesia. There are currently studies determining what role gabba has and is there away to get the levels corrected when people reach that point in the disease.

I have talked to many people who where diagnosed around my age of 35, received Cardopa/Levodopa early on like my self and went on many years still taking it. Currently there are 3 people in my young onset group who are going on year 11 with C/L and have not had major side effects yet.

After talking with my MDS and Dr. Okun the director of NPF medical team, I saw no reason to wait to start using it. Most University Doctors and research doctors agree with this line of thought. Unfortunately when the big Pharmaceutical companies where developing dopamine agonist the put a bunch of false information out about levodopa so they could scare doctors into using their new drugs. The best advice I have been given is only look at the studies that where not funded by pharmaceutical companies.

Good luck and blessings

Adam 

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Adam,

I disagree that Natasha's research is based on old data.  Many neurologists and MDS's recommend waiting to start C/L until a person really needs it.  IMO, that's good advice with any drug.  I see a MDS at a major neuroscience center and he doesn't recommend starting any PD drugs until really needed.  Before that, I saw a local neurologist who advised against C/L until really needed.   Dyskinesia is caused by taking C/L for PD.  If you don't take C/L, you don't have the dyskinesia.

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I think we have had this discussion  before. There are many threads on Ask the Dr's forum on this site that are contrary to what you have said. This is an area where we just disagree.

We do agree on exercise. I believe like you it is the only thing that has proven to slow the disease. I believe the reason I have not had any progression in the last 2 years is because of my exercise regime. Much of my motivation has been from reading your post.

One more question for you, How is the medical MJ working for you? still using? I have been thinking about using it.

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I think Adam is right, most PD experts say symptomatic treatment of PD is individualised.What works for me may not work for you.I have seen a Pwp who did well with only Azilect for 5yrs,while others did not do well.The rate of progression of PD differs for everyone and if you are on C/L,the period of developing dyskinesia is dependent on the rate of the disease progression.And some people ended up not developing dysinesia.Dr Okun said only 50% of PWP develops dyskinesia in 5yrs,but it is hard to predict who will and who will not develop dyskinesia.According to old data,most doctors used to delay the use of C/L,but not anymore.My MD told me it is treatable if it occurs,so one should not delay the use of C/L in order to get the most benefit.Mind you PatriotM,Dopa agonists too can cause dysinesia.And there is a lot of research going on out there to solve the problem of dyskinesia.Maybe it is better to go with whatever treatment makes you function better,whether exercise therapy with or without med of choice.

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Doctors change their mind every few days, I prefer not to experiment on myself 

Also it is nice to think that I fooled PD and won a few years of a normal life ;)

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I"m doing fairly well  .My balance has improved ,no more balancing acts in the boat.My movements have diminished changing brands of C/l.

Even Michael J.Fox has said many times",the best expert for PD is ourselves"

I know others who are not doing well and they make many more doctor calls then I do.

My last call I got a nurse  from the MD clinic call me back.Oh your really want us to help you ,chuckle,chuckle.Im still wondering why I didn't respond.

I guess Im glad i can do so well taking care of myself.Another  byproduct of developing self leadership skills from Dr.Low

 

 

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We all like to believe our neurologist knows best, yet competent neurologists disagree on this important issue, so asserting a position based on  what your/one neurologists says is not the best way to make your decision.  One should do enough research to be confident they have found, read and understand the newest data or, it's easier and more reliable to look at what is the consensus of the PD organizations and university/research centers.  It's like, you can always find scientists who deny climate change, so what matters is, what is the consensus?  Over the years, I've seen 3 neurologists at the Minneapolis VA all of whom are also professors at the U of MN and they disagree with each other on this central issue.  I'm 71, was diagnosed 6 years ago, and took the path until very recently of holding off on L-Dopa meds, which I now regret.  I'm satisfied the recent data and the consensus is you are better off to start sooner than later.

https://www.youtube.com/watch?v=utVZaOLUiDo&t=6s

https://vimeo.com/191664871

 

Edited by MarcB

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All very good and compelling answers & suggestions. Yes, of course exercise is what you need to do as much as possible. Even if that means simply taking a 30 minute walk. The best person to get advice on exercise would be your doctor. As it was already mentioned, everyone is different in the PD world.

Medications... that's the hardest part for most of us. I am 50 years old and was diagnosed five years ago. The neurologist started me Azilect. It appeared to be helping, but only for a few months. Also, be sure to look at the Azilect website and research the interactions it has and the OTC meds you cannot take while on Azilect. If get a cold, cough, etc, you can't take them. Dextromathorathan, in most cough/cold medicine. 

Currently I take 2 Carbidopa/Levodopa 25-100mg. 4X a day & Comtan 200mg. also 4X a day. You'll find the more you research and ask others, everyone takes some combination of medicine that works best for their particular situation.

I wish you well and don't give up!....Ever!

Chris

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