My Newly Diagnosed Story
Posted 07 February 2014 - 07:19 AM
Posted 07 February 2014 - 08:38 AM
Posted 07 February 2014 - 10:30 AM
Im sorry you have joined our club. I was diagnosed officially about 3 years ago. I take sinemet, sinemet CR, Amatadine and requip 12 mg at bed. Also clonizapam when the dyskinesia storms arrive. Sleep Im not sue what that is anymore. I do take melatoin every once in awhile which helps. Lack of sleep is a common problem we all have.
Have a Blessed Day
Posted 07 February 2014 - 12:03 PM
Welcome to the forum!
Can't help you with the medicine, as I don't take anything other than Mucuna Puriens (herbal L-Dopa) when I really need it.
As for the fears, if you can suffer through 300 kidney stones, PD will be a breeze. As you said, you've already had it at least a year and probably a lot longer. Having some doctor confirm it with a diagnosis didn't change anything. So, I just wouldn't worry about it. As with your other disease, just take it one day at a time and be sure to exercise.
Many of us find it very difficult to sleep through the night. So, we just do something while we're awake in the middle of the night. Many of us also take a nap from time to time. As you read the forums, you'll notice that many of the posts happen in the middle of the night, because so many of us are awake. Actually, at least for me, the inability to sleep is probably a hidden blessing, because I tend to get very stiff. Being awake and moving around several times during the night helps fight the stiffness and pain.
Edited by PatriotM, 07 February 2014 - 03:28 PM.
Posted 07 February 2014 - 02:44 PM
I'm new here too, just diagnosed last week, and I've found some fantastic support and information here. I can't help with the medication questions yet. It seems like alot of us here are the main breadwinners for our families at the time of diagnosis. Just another little stressor I guess. Sleep issues seem very common from what I've seen on the forums. I get up every morning around 2-3 and just try to stay still so as not to disturb my wife. Like yours, she has been wonderful during this change of circumstances. The least I can do is let her have some worry free sleep.
Some things can interfere with sleep like alcohol or caffeine too close to bedtime. I find that meletonin and chamomille tea help somewhat. At least they help in falling to sleep. I haven't found anything yet to keep me asleep.
I wish you all the best,
Posted 07 February 2014 - 09:46 PM
Posted 10 February 2014 - 12:08 PM
Thank you for your support and your responses. I watched an amazing interview with Michael J Fox that he did for CNN. He made a great statement that has helped me, "Your happiness is in direct inverse proportion to your expectations." Learning to accecpt yourself as you are today makes the right now much more fun.
Posted 10 February 2014 - 02:27 PM
Posted 11 February 2014 - 11:56 PM
Posted 12 February 2014 - 08:11 PM
What dose of Mucuna do you take and when? Ironically I am a beachcomber and I pick these same sea beans up on our beaches- never knowing that this little one had L-dopa in it. How has it been working? I purchased some a while back but was unsure how much to start with. Thanks......
Posted 13 February 2014 - 07:23 AM
I get my Mucuna from a company named Green Packs (I think someone on this website recommended them). Each capsule contains 60 mg of L-Dopa. Currently, I'm only taking Mucuna when I really need it. When I'm very stiff and sore and have difficulty rolling over in bed, I'll take one capsule in the morning with breakfast (the Mucuna makes me slightly nauseous if taken without food).
On Saturdays, I like to participate in Airsoft (like paintball), because I like to shoot and it's great exercise (actually exhausting by the end of the day). On those days, I take one capsule with breakfast and another with lunch.
I have found that the Mucuna helps greatly with the PD related stiffness and soreness, especially in my back and neck. In my experience, it is only moderately effective in reducing my tremor. The best way for me to describe the effect on my tremor is that it rolls back the clock about a year. For me, that means that when taking the Mucuna I still have the tremor, but the actual movement caused by the tremor is reduced.
I just saw my naturopathic doctor (ND & MD) on Monday and she said that I could try taking 2 capsules when needed. I haven't done so yet.
Posted 23 February 2014 - 05:46 PM
PatriotM -- On friday, my neurologist suggested I try the Mucuna but he told me to use the 98% strength powder- another PD patient he has has had success with controlling tremors using 1/2 of a small dosing spoon included in the powder 2x day. Is this the strength you are using? The capsules I had originally found were only 15% L-dopa at 400mg each. Tracking down the raw powder and ordering it made me feel like a user looking for cocaine as it is a fine white pwder sold with a little spoon! I wonder how I can travel with it!?
0 user(s) are reading this topic
0 members, 0 guests, 0 anonymous users