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My Newly Diagnosed Story


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#1 jbirish

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Posted 07 February 2014 - 07:19 AM

I was diagnosed on 12/26, Merry Christmas, at 40 years old the diagnosis did not come as a shock as I had symptoms for at least a year. I decided to go to the doctor when I loss the ability to hide my tremors and head and shoulder ticks. I was kind of blah to the diagnosis as I have an incurable kidney disease that causes me to make kidney stones (to date I have had more than 300 stones). So I figured if I can function and live with that PD is no big deal. I was wrong about that. PD unlike a kidney stone lives with you everyday. I had my follow up appointment yesterday and was moved up on Requip from 6mg to 15mg a day. I worry about my future, I am the bread winner for the family as my son has special needs and my wife home schools him and I have a daughter getting ready for college. I have a demanding job as a project manager for a construction company in NYC. My employer is very supportive. I made the decision to tell them based on the whispers about my shaking hands. They are amazing but I have to produce at the same level or they may become less supportive which I cannot blame them for. The most amazing part of my life is my wife. She has had to deal with so much I cannot believe how she has faced this with me with such a positive attitude. Well, after that very long introduction I have a few questions. Is anybody at that amount of requip and how has it affected their lives? I can't sleep at night any suggestions to help? Also how do you deal with your fears? The thing I hate most is the wondering, when will it get worse? When will the meds stop helping? Thanks NPF for giving us a place to connect.

#2 PapistwithPD

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Posted 07 February 2014 - 08:38 AM

Welcome, brother. I'm pleased you've found the forum. Like you, I was diagnosed just after Christmas. I'm happy that your employer is supportive. When I told mine, we all agreed I would be transitioning out of my current position in order to seek something which would be a better fit for the nature of PDs progression. As with you, I am a father and the breadwinner in my family (as of now). For me, my biggest fear has been how my children will see me, Having been used to being 'big strong daddy', and knowing how that will change, and that the change is already happening. I deal with these fears by praying, and spending time in church daily... Honestly, a commitment to my faith is the only thing that can give me solace. I know everybody is different, however. As far as sleep is concerned, what's helped me is making the commitment to my rest and sacrificing my evenings to go to bed as early as possible, knowing that I'll be spending a goodly amount of time at night awake. I know it seems obvious, but if I have no sleep, everything the next day is worse, including the following night. I dearly hope I've been of some assistance. I will pray for you, brother, and I wish you good health.

God Bless,

-Papist

#3 joy h

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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

Joy



#4 PatriotM

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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.


#5 TNdad

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Posted 07 February 2014 - 02:44 PM

You've definitely found the right place in this forum,,

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,

S

#6 livingwithtau

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Posted 07 February 2014 - 09:46 PM

My MDS prescribed Clonazepam for sleep which does not prevent me from waking around 3 a.m. But I fall back to sleep again until the alarm goes off at 5 a.m. At first I resisted worrying about dependence and trying to wean off until I realized how much better sleep I got with it.

#7 livingwithtau

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Posted 07 February 2014 - 09:49 PM

TN dad--where in TN are you? I'm also in TN.

#8 jbirish

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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. 



#9 joy h

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Posted 10 February 2014 - 02:27 PM

Great statement that way I cause myself less aggrivation

#10 newbob10

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Posted 11 February 2014 - 11:56 PM

Jbirish, welcome. It sounds like you have a lot of good support. So important. Ill comment more later - I'm on the architect side of the construction industry. Just wanted to welcome you, and tell you you've found a good place here. As far as sleep goes- no magic bullet, but clonazipam has been great for me on the really twitchy nights. I've also resorted to a separate room most nights to give my wife a better chance at sleep. I'm less stressed that way too and find I get a better night sleep too. Best wishes to you.

Bob

#11 Annikin

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Posted 12 February 2014 - 08:11 PM

Patriot M-

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......

Annikin



#12 PatriotM

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Posted 13 February 2014 - 07:23 AM

Annikin,

 

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.    



#13 Annikin

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Posted 13 February 2014 - 08:36 PM

Thanks Patriot. 



#14 Annikin

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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!?






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