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How long do I have before reaching the stage where I can't work?

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Posted 11/30/2015 4:34 AM (GMT 0)
New Genesis,
Welcome back! Amazing that you came back to update us. Thanks!

I don't have a good response for many of your comments. Unfortunately, it is the nature of the beast. Have you ever investigated deep brain stimulation (DBS)? I haven't and am not promoting it ... simply offering it as an alternative.

As for Tasigna, the medication prescribed for Leukemia that supposedly slowed the progression, or in some cases reversed the PD symptoms, it is in it's infancy re: PD. A lot of people are frustrated with the press for promoting something that is so out of reach. It sounds great, but is months or probably years before it can be prescribed for PD. It's my understanding that this data was reported at a medical conference, but no papers have been submitted yet. There were only 11 people in the study. No one knows what their qualifications were (until the papers are submitted). It does help expedite the process knowing the drug has been used on humans. However, people do not take this med for long periods of time. People with PD would- not something that has been researched.

Meanwhile, I truly believe in the benefits of rigorous exercise for people with Parkinson's. I posted the link to a story done by CBS Sunday Morning 3-4 weeks ago on PD and exercise.

Thanks again for keeping in touch,
lizzy4451
Posted 11/30/2015 4:26 PM (GMT 0)
Hi,

My posts from the beginning have been about my honest assessment of where I am at physically, intellectually, and emotionally at the timeframe when I post. Like a journal. I don't know anyone here so I feel free to post honestly. I strive to do things I enjoy and do the things like diet and exercise that put me in the best shape to do my best against PD. I could say I am happily fighting while my body increasingly does not co-operate but that, in my case, would be lying. I hide my feelings and thoughts from those around me so as not to push them away while PD progresses. Here I am honest.

Don't misunderstand. I am not sitting around feeling sorry for myself. You won't find many with PD as active as I am. Last week, I played LaserQuest and out of 30 people finished 2nd, 6th, and 1st. I did 5 hours of beer and karaoke at a friend's place on Saturday. I spend my time with non-PD people. I am just more worn out the following day now. And I have a 3 week trip in January (2 week cruise) through Asia and will climb the upper part of Macau Tower, stepping outside at 1000 feet and climbing (secured) 400 feet up on ladders; I'm wondering though what new thing will happen on my return flight. It's better to burn out than fade away is my thought process.

It is interesting to see how people treat me as PD advances. Though they know I have PD, I do my part and hide my symptoms as best I can. I can say I have some good friends. Lot of effort on my part to hide things.
Posted 12/4/2015 3:32 PM (GMT 0)
TruthGenesis,
Wow! It's wonderful that you are so active. There are studies indicating rigorous exercise can slow, and perhaps reverse, PD symptoms. I just read about Macau Tower (wasn't familiar with it - had my geography lesson for the day). I'm impressed! Sounds like an awesome experience. I'm not comfortable with heights and there is NO WAY you would get me to do that.

Have you looked into a PD support group? I think they can be beneficial. No one knows what it's like to have PD more than someone going through the same things. I will say that it can be a bit overwhelming if there are folks at the PD support group who are significantly more affected than you. If there happens to be a young onset group, that may be more appropriate. If there isn't one, maybe you should start one. (I did.) Just a thought.

As far as your friends and their reaction to PD ... I found over time that my friends changed. Some came forward and some faded away. Perhaps some of the latter may be my fault ...but some just weren't comfortable with something they didn't understand. I find I'm much more relaxed around people with Parkinson's - they 'get it' with out having to explain or say a word. I can say that my PD exercise class has been full of supportive people who don't look at you funny if you stumble or shake. They simply give me a hand (mentally or physically), if I need it, and go on with their business. It is a support group in itself. Support groups work two ways. They are an avenue for: 1) receiving support, and 2) giving support. Your participation may as beneficial for someone else as it is to you. There is a window in the progression when folks are seeking answers and a support group can be just the ticket. Off my soap box.

I hope you have a fabulous time on your trip! I went on a self-guided trip to Nova Scotia in eastern Canada (near Maine) and neighboring provinces this past Spring - had a great time. (I live in the US - not near Nova Scotia.) I look forward to hearing about your trip, as well as your PD comments.

Best of luck,
lizzy4451
Posted 5/7/2016 6:02 PM (GMT 0)
If you are new to Parkinson's, and are taking Levodopa, I want you to consider very strongly the advice that I am about to give.
If you have been prescribed to take:
Levodopa/Cabidop 100/25, 3 pills a day
then experiment a bit with reducing or not taking dose #3.

If you take pill #1 in the morning, then take pill #2 in the afternoon, and that evening you plan to just stay home, try taking a half pill or no pill, if your symptoms allow you.
Because long term use of Levodopa leads to Dyskinesia. Any time you can cut down the Levodopa will benefit slowing Dyskinesia.
Dyskinesia is a side-effect that is almost as bad as Parkinson's. I discovered how annoying it is, having my left leg jump and torso writhe in year 5. You will get it too. We all do after long term Levodopa use.

Last Fall, my prescription became:

- Levodopa/Cabidop 100/25 --> 4.5 a day
- Azilect 1 MG - still one a day
- Domperidone Mal 10 MG - 3 times a day for stomach issues that Levodopa is causing (very bad heartburn)
- PMS Amantadine 100 MG 3 times a day for Dyskenisia & helps with fatigue
- I added breaking a portion of a sleeping pill off every night. i sleep better
- Restorelax is part of my night routine now too.


3 Amantadine a day led very quickly to my getting frequent nightmares, and I hadn't had any for a very long time until then.
So I chose not to take the evening one.
To reduce Dyskenesia, I began taking half pills instead of 1.5 yellow pill (Levodopa/Cabidop 100/25)
I found i reduced Dyskinesia during the evening and after being home for an hour, all PD symptoms would calm down anyway.

Now I frequently only take two doses of meds a day, skipping the evening one completely.
Sometimes, if I know that I'll be home all day, I take no meds and deals with things. Really not bad if just hanging out at home.
I actually went off meds for 4.5 days. It got too difficult to type at work, and I had to get back to my meds of course, but I actually had two days without Dyskenisia.

The specialists know meds and more about Parkinson's than we do, but we patients know how meds affect us, and how we feel.

5 years ago I started on 3 yellow Levodopa/Cabidop 100/25 a day
Now I take the equivalent of 2.25 to 2.5 yellow Levodopa/Cabidop 100/25 a day, skipping the 3rd dose.
If I am going out somewhere and need more on an off day, I will take it.
But at home, I do well with a glass of wine after work, rather than 3rd dose.

Keep exercising.
Posted 3/12/2017 3:58 PM (GMT 0)
BEWARE signs that u are over medicated!
I was over-drugged for 2 years

2 years ago I needed just a tweak but instead I went from
- Levodopa/Cabidop 100/25 --> 3 a day -- that's 300/day
up to
- Levodopa/Cabidop 100/25 --> 4.5 a day -- that's 450/day
that is a 50% increase but i thought the specialist knew what he was doing

As of a month ago, i am back down to near equivalent of Levodopa/Cabidop 100
- Stalevo 100 - that's 300/day (i actually only take 200/day)

immediately, my side=effects decreased immensely
- i could suddenly use my hands almost normally again to wash my hair and brush it in the morning
- my slow movement went away
- my intense daytime fatigue went away
- when i arrive home from work, i am no longer exhausted and utterly drained of energy
- suddenly my insomnia is gone
- i no longer feel amped up as though i had too many strong coffees
- my Dyskinesia has gone from intense at times to barely there
- Distonia is barely there
- often cloudy thinking went away

I know PD treatment is not an exact science but my specialist really messed up
for 2 years he over-medicated me

i also still take 2 doses rather than 3 doses
and take only 1 dose or no dose, once a week
i had my taste of intense Levadopa side-effects for 2 years and i want to keep slowing it down
i don't need 3 doses a day unless i go out at night on a work day
and these are not disease altering meds so they can be skipped

keep in mind exercise makes the brain temporarily produce extra dopamine
use this
Gingko Biloba and curcumin/turmeric are theorized to do the same


as i suffered i noticed how some treated me, abandoned me, mistreated me when i asked for consideration
i know what to expect later

Post Edited (TruthGenesis2) : 3/12/2017 10:03:00 AM (GMT-6)

Posted 6/3/2018 4:16 PM (GMT 0)
Update:
I really seem to be collecting just about every symptom that I knew about and ones that I didn't know about.
Now have Myoclonus (sleep) jolts/jerks frequently enough
Now have constant ringing in my ears (hearing tested fine)
Other things: meds less effective, much slow walking, more muscle aches, all symptoms growing
Trying to limit to two doses of meds a day to limit side-effects, it helps
i discovered i'm sensitive to gluten a year ago. Gluten free helped with many symptoms that i thought were exclusively pd so it helped but pd keeps advancing.

i decided to finally go on disability, it was the ear ringing that helped this decision
now i frequently nap twice a day
my feeling is that i'm stage 3

that i know of i'm just missing hallucinations and dementia, but i expect to add them the way my memory is going
Posted 8/21/2019 11:29 PM (GMT 0)
Truth, you are a brave guy and inspiring. Continue to keep us updated.
Posted 8/22/2019 11:06 PM (GMT 0)
"as i suffered i noticed how some treated me, abandoned me, mistreated me when i asked for consideration
i know what to expect later"

This is horrible. What the hell is wrong with people??? Hope you're still hanging in there and remaining stoic and active. At least as much as possible.
Posted 9/4/2019 12:30 AM (GMT 0)
Truthgenesis2. How are you doing now? You’re feelings and story really got to me. I hope you’re well.
Posted 9/5/2019 4:30 PM (GMT 0)
OP has popped up in another thread or two this summer, but I don't think he's commenting on this thread anymore.
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