Intro

[Isthistheone]

A newbie here. Like others slowly ramping up my carb/levo dosage. Trying to stay active, cycling three times per week, yardwork. Always reading up on latest PD news. Tasigna very promising JMO.

[TheresaCurley]

Hi I'm new here also. I was just diagnosed last week. Though I have had symptoms for years.

[Isthistheone in reply to TheresaCurley]

Yea, had symptoms for 3-4 yrs prior to diagnosis. Loss of smell for 12 yrs or more! I'm very interested in trying Tasigna. I've located a Dr who will write a prescription. Gotta assemble the rest of the team.

Are you on any meds? I suspect for most, this disease becomes very burdensome down the line. Stay as physically active as possible, keep moving. I hear that alot. There are more drugs available all the time to help us cope. Tasigna has real promise!

Good luck and stay healthy!

[Beckey in reply to Isthistheone]

Welcome! I've heard people can have symptoms for many years prior to diagnosis.

[grower]

Great to hear you're onto the exercise regime, that seems to have the most beneficial effect, I wouldn't hold your breath on Tasigna since it hasn't even had a placebo controlled test yet but there you go, good to stay positive I guess. In the mean time, enjoy life to the most!

[Isthistheone in reply to grower]

I know the preferred standard is double blind placebo control. Even with fast tracking, doubt this will get FDA approval in less than 5-7 years. Tasigna research goes all the way back to 1989. I'm a strong believer in the research and the science.

[TheresaCurley in reply to Isthistheone]

What are you taking now Isthistheone?

[Isthistheone in reply to TheresaCurley]

My name is Jim btw. I dose every 4 hours and it's 50/50 if I make it to the next dose. Usually off at one hour before next dose. I'm using carb/levo 25/100 ODT (oral dissolving tablet) 2.5 tabs starting at 5AM. Also at 5AM and 1PM I take 5mg of selegiline. One tab carb/levo at 9PM. Around 10PM one tab carb/levo 50/200 ER (Extended Release) gets me through the night.

Used to get very nauseous from the carb/levo in the beginning. My third and current Dr got me on the ODT, what a relief for my stomach!

[p-oui in reply to Isthistheone]

Jim, Have you considered taking Azilect instead of selegiline?

[Isthistheone in reply to p-oui]

I tried azilect, but switched to selegiline for some reason years ago.

[Isthistheone]

The kicker for me was I never wanted to use my left arm. I thought I had a stroke or maybe ALS. In ten minutes the neurologist had me diagnosed with PD. My first sign was in the pool. I used to swim three times a week, 2000 yards, 40 laps. I noticed a very subtle change in my kick. Back then I could swim all day. PD has taken all my strength, can't swim 100 yds w/o stopping. Definitely keep moving, do other stuff!

[p-oui in reply to Isthistheone]

Nice to meet you Isthistheone, I was dxd 6 mos ago, main symptom tremor which seemed to come out of nowhere. I just got my MRI back and it shows a "silent stroke" on the left side of the brain - this was a surprise - and they are apparently not uncommon. One neurologist attributes this little stroke to the tremor in my right hand and may be what caused the PD or Parkinsonism. I just found this out so I don't know what any of it implies but hoping for some good news (but who knows). I meet with a movement disorder specialist next week who will have more expertise.

In terms of meds, I am on Azilect and found it very helpful in terms of a "brightening" effect. Exercise 7 - 10 hours / week (vigorously) and see an improvement in my tremor. There is a question whether Azilect can slow progression and while it is not proven to slow progression it seems that it is not proven that it doesn't slow progression. Anecdotally, it seems that a lot of people report good results with Azilect.

Tasigna is the same thing as Nilotinib, right? I read about the first trial out of Georgetown and understand Phase II trials will begin shortly, at Georgetown and other places - not sure of the details - but I understand they are also going to trial for early onset PD patients as well. I am interested in this trial for early onset - the results for advanced PD seem fairly amazing. Check it out if you haven't seen the video. More info also here: michaeljfox.org/foundation/...

I know a lot of people are starting Nilotinib if they can get a script for it and I'd love to see anecdotal research from those individuals.

We have also chatted a lot on this board about NAC - you might want to look into that. I am starting with 600 mg a day to get started but struggling with it a bit.

Good luck and keep us posted!

[Isthistheone in reply to p-oui]

NAC?? It took me several months to get the meds that work for me. That's common. Everyone reacts differently to this disease. The best medicine is exercise, keep moving! I hope to be on Tasigna in a month. I need a Dr to follow me. My neurologist said no. My family Dr is my next choice. Gonna check with him this week. Extensive ekg and blood work for the first several months. Need to make sure you are very closely followed. Most DRs will not write off label prescription. I'll let the board know when I start and report progress too.

[Bailey_Texas]

I can now see that i had symptoms in my 30s i am now 62 11 years dx.

[JohnPepper]

Hi isthistheone. If you are newly diagnosed, and before you get hooked on Pd medication, you should look into FAST WALKING. I was diagnosed with Pd in 1992, In 1994, after getting a lot worse and taking the usual Sinemet and Symetrel, I was taken off both of those and put onto Eldepryl, which is similar to Aziect.

At that same time, I stopped doing gym for 90 minutes every day, and started a walking program, which normally starts for 10 minutes, 3 times a week and slowly builds up to one hour, three times a week. After 8 years of that regimen, I was able to stop the medication and start living a normal life again.

I have lived like that for the past 14 years. I am not cured, because if I stop the walking my symptoms slowly start to return again.

Your choice is, either start doing the walking or carry on with the medication, together with the terrible side effects and coming to the inevitable point where the medication no longer works and you become immobile.

I am 81 years old and I am fitter now than most men of 60.

I am on a tour of the USA and Canada right now and am teaching Pd patients how to walk properly, which only takes acouple of minutes, and thoe that have done it are now able to start doing the fast walking, if they choose to do so.

If you would like to learn more then go to my webste - reverseparkinsons.net and read a whole lot more about it. The only thing I am selling is my book, telling my Pd story, which you don't have to buy. You can get all the info free of charge on my website.

Good luck!

John

[Isthistheone]

Thanks for the info JP. Very active prior to dx. Remember how great I felt after a 2000 yard swimming workout (35 min) 3X per week. Definitely keep moving! Looking into fast walking. Thanks!

[Prayingforacure]

Hi Jim, God bless you keep positive it is most important, praying the cure is very soon to be. Patti