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

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TruthGenesis
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Date Joined Jul 2011
Total Posts : 9
   Posted 7/14/2011 2:34 PM (GMT -7)   
I'm 43
I began losing my sense of smell around 2000 when I was 33.
2006 or 2007 - noticed left hand index finger tapping.
2007-2008 - noticed my focus was lessoning.  Remember mentioning it to a friend many times, though had no clue why. 
            Programming (I.T. field) skills weakening.
2008 - muscle tightening in left forearm.
2009 - noticed I had been controlling the shake in my left arm, almost unconciously. 
       Left alone, left hand shakes uncontrollably.  Took effort to swing arm while controlling shake.
2010 - summer - diagnosed with Parkinson's.  Biking leaves leg muscles quite sore.  And I'm always athletic.
2010 - Fall - began Azilect.  Muscle tightening is ok now. 
            - noticed jaw tremors and right hand index finger tremors now too.
            - my memory and concentration feel weaker.
2011 - June - biking (on Azilect).  Muscles feel ok.
            - lower left leg feels different though.
            - more tired now
 
I used to be kind of a superstar programmer with tons of desire to understand things.  Now I'm less.
 
What stage am I likely in?  I figure stage 2, since 2010.  From any of your experience, how long do I have before balance impairment?
Do other meds help?
How long can I likely function in my job as a programmer?  Will stronger meds help my logic skills and focus, and energy levels?
 
 
I'm not particularly interested in fighting Parkinson's.  Meaning, I'd rather leave my job and travel for a couple of years, and then say goodbye.  I'm ok with that decision.  I've lived a fun life, with lots of romance, travel, and adventure.
Don't want to live a life battling the Parkinson's progression as it slowly takes me over.  Nor do I want to burden others. 
Just want to enjoy my passion for travel before this takes me over.
 
 
But I have a wife who I met while travelling a few years ago (I married her, not knowing I had Parkinson's and feel very guilty.  She moved to be with me.), so I'm going to fight this for her, until I feel I'm making her life less fun, or until I start to be a burden, or until I feel it's too tough to fight and still look normal.
This means I have to function at work so we can pay the mortgage and continue travelling.  I want to show her as much of the world as I can.
Last year: Cuba and China.
This year so far: a week cruise, a week at Universal Studios, and a week in Vegas.
 
 
How long do I have before progression is too strong for meds?  Estimates on how long I can work?  Please be honest.  I'm okay in the present. i.e.  I can take honest opinions.
 
 

lizzy4451
Forum Moderator


Date Joined Jun 2005
Total Posts : 422
   Posted 7/19/2011 2:14 AM (GMT -7)   
Truth (may I call you Truth?),
My neuro said that the progression rate in the first year is an indication of future progression. That has been true for me.
 
However, I think there are some things you can do that can influence your progression rate - primarily exercise ... rigorous exercise. I am involved in a boxing-based fitness program for people with PD. I think it has made a difference. If I think it has, it has. I would encourage you to continue to remain active.
 
I am also in IT - a database administrator. I was diagnosed 10 years ago in my early 40's and still work full-time. I have been VERY fortunate. My challenge lately is multi-tasking - a common problem for people with Parkinson's. I used to handle 10 people pulling me in different directions. Now I prefer time alone with no distractions. Unfortunately, that's not the nature of the job.
 
I would focus on what I CAN do. I would change my priorities - do those things you always wanted to do TODAY ... or at least sooner. I would celebrate my successes - what you do well or have accomplished. Take up that hobby or learn that skill SOONER rather than later.
 
I wish you the best of luck and health,
lizzy4451

lizzy4451
Forum Moderator


Date Joined Jun 2005
Total Posts : 422
   Posted 7/19/2011 2:17 AM (GMT -7)   
Truth (may I call you Truth again?),
Oh yeah ... if you want a 'score' on your progression rate, go to www.patientslikeme.com and complete their question/answer quiz to calculate a UPDRS score.
 
lizzy4451

TruthGenesis
New Member


Date Joined Jul 2011
Total Posts : 9
   Posted 7/20/2011 1:28 PM (GMT -7)   
Lizzy,
 
Thanks.  I appreciate you taking the time to write.
 
I  agree with everything you wrote.
 
Keeping fit is something I do.  I jog several times a week, bike or walk 2.5 miles to work, lift weights a bit, pushups and situps in the morning.  Walk a lot.
 
10 years and going?  You set a great example. 
I'm not the stud developer I used to be.  I'm not looking to move up, just do what I do at my job level.
 
Agree with enjoying now.  Live with no regrets.  Whether it be hopping on a small plane at a plane show, karaoke at a pub, horseback riding, travel, etc.  Just do it, as long as financially feasible.  We have the have-fun-now-and-be-a-little-crazy card.  
 
While I'm a realist and know PD may reach the point where it's best to let things be, I'm also hopeful.  These two caught my attention.
A single injection of genes to the brain can substantially reduce the symptoms of Parkinson’s disease, research suggests.
The treatment improved walking and dexterity by up to 61 per cent in patients, a conference heard at the weekend.
Some were able to take the bus or complete a round of golf for the first time in years.
 
CU researchers find promising drug for Parkinson's disease:
http://www.checkorphan.org/grid/news/research/cu-researchers-find-promising-drug-for-parkinson-s-disease
CU researchers find promising drug for Parkinson's disease
Tuesday, July 05, 2011
Colorado researchers have discovered a drug that stops the pro

TruthGenesis
New Member


Date Joined Jul 2011
Total Posts : 9
   Posted 7/20/2011 1:54 PM (GMT -7)   
Lizzy,

A question. Do you drink coffee? If so, did you adjust how much you drink at any point? I find tremors to be a little more easily manageable when off of caffeine. But I've returned to a cup or two a day for the energy boost.

Truth.

lizzy4451
Forum Moderator


Date Joined Jun 2005
Total Posts : 422
   Posted 7/21/2011 9:25 PM (GMT -7)   
Coffee is one of the things I totally cut out when I was trying to determine what caused my tremors. Caffeine aggravates my tremors so I never went back to it. I will occasionally drink coffee if I need the 'kick'.
 
Yes, the studies/topics you included look interesting. I think gene therapy holds a lot of promise.
 
lizzy4451

polishdan
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Date Joined Mar 2010
Total Posts : 1595
   Posted 7/28/2011 7:41 AM (GMT -7)   
Truth
Is Azilect the only med that you take? For me Azilect helps with all symptoms except tremors. Artane pretty much stops the tremors. Is your PD left sided? Are you right or left handed?

Dan

TruthGenesis
New Member


Date Joined Jul 2011
Total Posts : 9
   Posted 7/28/2011 6:09 PM (GMT -7)   

Dan,

I take 1mg Azilect each morning.  It helps with rigidity.  Helped my thinking too, or my focus, I remember noticing.  I still control tremors in my left arm, right index finger, and my jaw, mentally.  Though when I'm tired, it's tougher.  A year ago, I also had an ache in my right upper shoulder blade.  Once on Azilect, that went away.  My typing improved in my left hand too.  I'm an IT developer... kind of need to type somewhat accurately.

Now... I feel I may need a little more Azilect or something.  I  think my shoulder blade ache is returning ever so slightly.  And I feel things are a little, ever so slightly present more on my right hand.

I'm right handed.  Definitely in terms of where PD began (left hand) and where it is more present, it is left sided.

I also find rainy dark clouded days to affect my mood a little and my control I suppose.  Anyone else find this? 
I take extra vitamind D every day, as my D count is low.  I've read this is common with PD too.  My family doctor couldn't figure that one out a few years back.
 
Truth.

The Bear
Regular Member


Date Joined Mar 2007
Total Posts : 364
   Posted 7/29/2011 9:41 AM (GMT -7)   

Hi Truth, in terms of your 'progression' I don't really think in terms of what stage I am in rather how am I coping today. I have been informed by my neuro when I asked, that progression rate can be looked at as 'how have you gone during the first year or so since you knew [or suspected] you had pd - not necessarily as when you were first diagnosed. With me I strongly suspected [or knew] up to 2 years before I was formally diagnosed. I was told that I had slow progression and when I asked if there would suddenly be a rapid deterioration, he said that generally speaking if the thing starts off slowly then, as a rule but not exclusively, it will carry on down that path. But never say never. Like everything else with this krapinson thing, we all do it differently - it is a designer disease and we progress at our own rate and not against a standard scale.

As for the concept of 'fighting' pd or anything else, come to that, I have to confess that I don't really understand what that means. I have it and I deal with it by trying to live and carry on with my life in as much of the same way as I always did. I don't give too much thought to it except when my legs decide not to work or my hands and arms remind me I am no longer as I was. I try to think along the lines of 'life's too short to worry about it' that time will come and I will try and deal with it as and when. This works for me and each of us has to find our own path through it.

I like your idea of getting in all the things you still want to do and keep working as long as you can. I had to give up work two years ago but there was an element of new director of programme wanted old senior managers out of the way and I had the reason she could lever with. I have probably had krapinson's 10 years or so. Like others I am sure, I keep getting told how well I am looking but I am sure that is based in part in the ignorance of others about what we should look like.
Sorry to have gone on rather, but I feel that just because we have the thing it is not the end of life as we know it.
Keep taklig the tablets.
The Bear

Old Clarence
New Member


Date Joined Jul 2011
Total Posts : 3
   Posted 7/29/2011 1:03 PM (GMT -7)   
Hello All,
I was formally diagnosed with Parkinsons about 4 months ago, though like some of you I knew something was wrong for sometime. I was diagnosed about 3 1/2 years ago with tardive dyskensia, a movement disorder which in my case involved involuntary grinding of my teeth. My tooth grinding is a 24/7 thing, and if I'm not grinding my face is moving. Initially this was thought to be medication related. Currently I take Botox shots in my jaws, temples, and head to take away the strength of the muscles. I take them quarterly and they keep me from breaking any more teeth, etc. After several years of searching and various treatment for dyskensia, I was diagnosed with PD. I too am taking Azilect 1mg daily and find that things have improved. I am 63 years old and am an insurance agent. Do many of you find that it is difficult to focus for any length of time? It seems that my memory, ability to multi-task, and ability to handle stress have suffered greatly. After about 6 hours of work I am so exhaused all I want to do is rest. My right side is about 20% weaker than my left, and I rock back and forth while walking and have little if any arm swing on my right side. Exercises seem to help that some. Were any of you Agent Orange exposed in the Vietnam era? Upon waking, do your legs feel like sticks? Do you hurt for no apparent reason? I have played a guitar for 50+ years and my hands are not working as well as they should and they are very sore the day after I play. (It's NOT being OLD!) Any similarities? I agree that I must stay engaged in activities. Comments or questions email to clarence at wallis insurance dot com.

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 7/29/2011 7:49 PM (GMT -7)   
Truth
Why not try Artane? It has a generic, trihexyphenidyl. It is very cheap. My tremors are very mild in the AM. I take Azilect about 11 AM. Then I take 2mg Artane generic about 1 PM. that contro;s the tremors pretty much the rest of the day.
ALL
I am right handed and right side PD. I find I do more left handed than I used to. Anybody else find this to be true?
I started playing ping-pong against myself with the table in return setup about 1 1/2 years after symptoms started. One evening as I was playing the ball was coming back to my left side. I automatically switched the paddle to my left hand and returned the ball! I had never tried to use my left hand. I just did it without thinking. I still do and I am as good with my left and right. I find this exercise helps with my coordination and dexterity.

Dan

TruthGenesis
New Member


Date Joined Jul 2011
Total Posts : 9
   Posted 7/31/2011 6:07 PM (GMT -7)   
Bear,

By fighting PD, I mean that I fight to control my tremors, which I can mostly do. Left arm is tougher as it's been present the longest and has advanced in tremors the most. Fighting also means my exercise habits to keep strong.  Later on, I'll need much stronger meds and all my efforts to stay strong and control tremors.  And,  at some point, even combined with meds won't be enough to lead the quality of life I personally want for myself and my wife. This is a fact.  Unless more powerful breakthrough meds hit the market. Timeframe? who knows.  But for now I'm able to mentally control tremors mostly.  I do normally carry something small in my left hand, like a coin, to keep that hand busy so I can focus more on just swinging my left arm.  It's a trick that I learned works pretty good for me, though it's not perfect.


Clarence,

I was develping rigidity in my left arm. Since taking Azilect the rigidity has gone away.
My muscles were getting very sore, uncommonly sore, after my bike rides to work. Since Azilect, the uncommon  soreness also went away.  Also my upper right shoulder blade ache went away (though recently I've noticed it returning very slightly)


Dan,

I'll ask about Artane at my next appointment. I'm also hoping to delay stronger meds as long as possible.
I'll thinking 1.5 mg Azilect might be good for me.
I play Wii games with my left for practice. Pretty good. Though boxing with Wii, sometimes my left punches are not 100% perfect when i do too many fast combinations.
Interesting about table tennis.


Truth.

Post Edited (TruthGenesis) : 8/1/2011 6:34:47 AM (GMT-6)


Schmiekella
New Member


Date Joined Aug 2011
Total Posts : 3
   Posted 8/1/2011 6:07 AM (GMT -7)   
TruthGenesis: I loved your 7/14 post! So programmer-ish. My husband is 68 and has had PD since 1997, with similar progression to what you explained, with diagnosis in 2002. He is a fighter and was doing okay until colon cancer surgery 2 months ago. We are working on getting him back to pre-surgery state. Fear and depression make everything so much worse and they are hard to fight, so do everything you can to get a good support system in place. My husband, too, was a programmer, and we owned a software company. He, too, was very athletic and loved to ride his bike after back problems prevented marathon jogging. Unfortunately, he had a bad fall on his bike due to balance issues, in 2003. I wish I had thought to get a 3-wheel recombant bike at that time, but we had several other things going on, and he had always been so independent he made decisions like that (little did I know that his thought process had diminished so he didn't think of it; we lost the business due to his cognitive decline and subsequent depression, but we've had fun with retirement). Make sure you continue to exercise as the muscle tissue really deteriorates fast if you don't. Communicate your fears to your wife and let her make a decision about what she wants to do. It is extremely hard for the caregiver as the disease progresses and takes a real commitment, but I feel it is what my life is about right now, as he is the love of my life and we have fought many battles together. We share as much laughter as we can find, even in the worst situations and this is so important. He can barely move much of the time right now, but we are going to the beach anyway! Even if it takes all we've got.
Looks like you are researching and that is critical. Doc's don't have all the answers, and we frequently take info to them. Each person progresses differently and you seem to have a positive outlook, which will help tremendously. Oh...he has been on Co-Q10 at 1200 mg since 2003. You might want to look at the clinical studies on that if you haven't.
Fight the good fight! Schmiekella.

polishdan
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Date Joined Mar 2010
Total Posts : 1595
   Posted 8/1/2011 6:18 PM (GMT -7)   
Schmiekella
What was done about your husbands colon cancer. Was the colon removed?

Dan

TruthGenesis
New Member


Date Joined Jul 2011
Total Posts : 9
   Posted 10/10/2011 8:04 PM (GMT -7)   
Now, in addition to 1.0 mg Azilect per day, I've begun 100/25 Levodopa/Carbidop  3 times daily.  In a few days, I'll be at full dose of this lite dose of Levodopa.
 
Why?  I've been managing a tremoring left arm, twitching right index finger, tremoring jaw.  Over the past few months, I've felt a slightly different feeling in my lower left leg.  At least I think I have.  Not sure.  Also my moods, while usually ok, have become occasionally less good.  (Mainly when I felt  the progression and worried about my wife's future).  Especially during cloudy, rainy days.  My energy seemed less...  I do bike to work, jog several times a week, situps in the morning, walk at lunch, use a Gazelle, pushups.  But usually less energy, especially after lunch.  My focus and concentration were really off.  Meetings, conversations, programming... focus would shift.  Muscle aches were more common more easily.
 
Since adding Levodopa, I've felt my focus coming back a bit, much like Azilect did a year ago.  Some days, I felt the tremors were less.  Other days not.  I guess I have to give Levodopa a chance to work over a few weeks to see if it helps more with tremors?
 
I do enjoy a glass of wine, or two, or three now, depending on the day.  This amount couldn't hurt with this medication could it?  Some days no wine too...
 
Another thing is that now that I'm on Levodopa, after lunch, I'm extremely tired.  So, my morning's at work are not bad, but after lunch, I have to wait until around 3 or 3:30 pm to feel energy to work.  Others have this?
 
So, feeling the progression, hating the need for meds, but I know I have no choice.
 
Looking back, through my life, I've always been sensitive, and more emotional.  Fought off a depression as a teenager.  Lacked confidence in general, though my upbringing was not one that inspired it.  Great a logic, high grades, but not so great a memory.  Athletic.  Strong libido, always.  Yawned a lot throughout life.  Gradually cloudy weather  affected my mood.  My nose drips much during cooler weather, increasingly possibly.  Trying to paint a picture of me and what have been Parkinson's signs (potentially) a long time ago.  Who knows.  
 
Now we'll see if Levodopa helps.
 
Truth.
 

Post Edited (TruthGenesis) : 10/12/2011 12:21:04 PM (GMT-6)


TruthGenesis
New Member


Date Joined Jul 2011
Total Posts : 9
   Posted 10/12/2011 6:54 AM (GMT -7)   
Forgot to add, that I have, over the past year, experienced swallowing issues.  Sometimes I need more water to make extra effort to  wash vitamins or some food down my throat.  Like they get stuck in the back of it, occasionally.  And my specialist said my movements were a little slower (neither I nor my wife had noticed).
 
Yesterday and today, I feel improvement.  Though still have to control tremors, just less effort needed.
Today I'm at full Levodopa (lite) dose.  Meaning, I won't take any 1/2 pills at any point;  Will take 3 complete Levodopa pills and one Azilect today.
 
My PD specialist is a well known one, one of the top ones.  He says I'm still in stage 1 PD.  I pointed out that I have strong symptoms in my left arm, right index finger tapping, the need to control my jaw tremor, possible strange feeling in my left leg, slight swallowing issues (nothing serious yet, I think), weaker concentration, and my wife said I had some moodiness lately.  Seems like signs on more than one side to me...  My specialist said that it was still minor PD, so I can only think "Oh oh... this is still minor and stage 1?" 
 
I guess with the extra effort to control things, I have to be extra focused.  Like most people are driving an automatic car, I'm now driving standard (my body).  Making an analogy....
 
Overall I feel good to go for a while.  I'm still very happy in life, despite this.  As always, I'm aware this can change.
 
I'll post an update sometime later this year or early next year.
 
Truth.
 
 
 
 

Post Edited (TruthGenesis) : 10/12/2011 9:03:27 AM (GMT-6)


lizzy4451
Forum Moderator


Date Joined Jun 2005
Total Posts : 422
   Posted 12/2/2011 12:19 AM (GMT -7)   
Truth,
Just read your post.
 
1) Swallowing - many folks find it easier to swallow if they use a straw. Might see if that helps. Another alternative is the Lee Silverman Voice Technique (LSVT) - I think it's supposed to help with swallowing, although can be pricey.
 
2) Levodopa/carbidopa AKA Sinemet. My choice would be to exhaust other medication alternatives first. It's my understanding you are taking only Azilect and levodopa/carbidopa. Have you tried taking a dopamine agonist - i.e., Mirapex or Requip (XL)?
 
I have taken Requip (later the Requip XL alternative) - and only Requip - since I was first diagnosed 11 years ago. I have been VERY fortunate to have had a slow progression and low meds. Requip has met my current needs. I will start Sinemet (or Stalevo) when needed. I would read about the primary side effects (dyskinesia) and how long it remains effective (usually 5 years - but certainly not true for all) without developing the side effects just mentioned. Michael J Fox's 'wiggliness' and involuntary muscle movements is an example of dyskinesia. 
 
I also agree with Schmeikella's previous comments that you know more about how various medications/dosages affect you than your doc does. I think I have the best neurologist around, but I still do the research and question her. (Not all docs appreciate you challenging them, however.) You know what feels right. You are your best advocate. Educate yourself and take an active role in your treatment.
 
Life is a dance. Don't sit it out.  --- H. Jackson Brown
lizzy4451

Post Edited (lizzy4451) : 12/2/2011 12:22:50 AM (GMT-7)


TruthGenesis
New Member


Date Joined Jul 2011
Total Posts : 9
   Posted 12/3/2011 11:13 AM (GMT -7)   
Hi Lizzy,
 
I had only noticed slight swallowing issues, once in a while.  Nothing serious.  Just didn't used to happen.
 
My specialist thought I should taken either Mirapex or Levadopa at this stage.  Because some people have the side effect of suddenly falling asleep while on Mirapex, I chose Levadopa.  I bike to work so I didn't want to take this risk.  Also I drive.  Don't want to suddenly fall asleep.
 
Would appreciate others who take or who have taken Mirapex to share their experience.
How well did Mirapex work?
Did you have the side effect of suddenly falling asleep?
 
Same question for those who have taken Requip.
How well did it work?
Did you have the side effect of suddenly falling asleep?
 
Then in March, I'll ask my specialist more questions.
 
So far  Levadopa has improved my symptoms.  Thinking is back on track. 
Had one morning with blood in my stool.  Lots.  I've learned to only take it with food, since.  And no problems with blood now.  Think it was an irritated stomach
Still do need to control tremors a bit.  But everything is much better.
 
Breakthroughs in Stem Cell research that were announced in November are the most positive research news yet.  Hope fully they can figure the puzzle on humans, and sooner.

yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1283
   Posted 12/3/2011 3:18 PM (GMT -7)   
I've been on mirapex from it's first day on the market.Here are some observations in my case,and many other pd victms.
1.mirapex is very very habit forming.
2.mirapex can cause compulsive behavior.gambling is an example
3.After mny years of use I no longer experience sleepiness after taking mirapex.
4.I find that the combo of stalevo and mirapex to be very effective at controlling my pd symptoms.
5.a generic version,at a fraction of the cost is now available.pramipexole
My dose is .75mg 4x.
 Some general observations on levodopa,and food .Wait for 15-20 mins after dosing before eating.Levodopa is much more effective if protein consumption is lowwithin an hr of dosing.
 You may also consider trying sinemet cr.This is a controlled release form of levodopa.
 I find that .5mg lorezepam very effective at adding to the length of my on time.I only use it on rare occasions.It is habit forming..Check with your neuro before making any drug changes.Wish you the best.Ed
Ed-Moderator Parkinson's disease forum.
Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.Meds:Stalevo,Mirapex



support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.

gvan22
New Member


Date Joined Dec 2011
Total Posts : 1
   Posted 12/30/2011 11:25 AM (GMT -7)   
To All,
 
I am a new member, just found this site on web. Was diagnosed with PD this past May 2011, but suspect onset was 2 to 5 years ago. Symptoms started with tremors in both hands, not at rest but when using them (told this is unusual- lucky me), also constant fatige, loss of strength in upper body,rigidity of movement in hands-arms, exterme short term memory loss, lazy left eye, shall I go on? Doc says stage two.
Meds are carbodopa/levodopa, azilect, and clonazepam for restless leg syndrome.
 
The good news is that the meds are doing their job and have reduced the syptoms. The question of course is for how long?
We shall see. In the mean time I am living my life with a good attitude, appreciating each day so much more than I used too.
 
And, thank God for support groups like this one and the one I found in my community, where I have gotten more information and support than from the 4 Doc,s that I have seen. Also,I am exteremly lucky to have the best caregiver in the world, my wife of 40 years who is and has made a world of difference in my life. I'm very lucky to have her!!!
 
Would appreciate any solid information, source material/contacts, regarding PD links to chemical exposure with TCE, PCE and pesticides, which I came into contact with through drinking water system while stationed at Camp Lejeune, NC.
 
God Bless and thank you all.  Stay strong!
 
 

TruthGenesis2
New Member


Date Joined Aug 2014
Total Posts : 18
   Posted 8/19/2014 5:24 PM (GMT -7)   
TruthGenesis here. Been a while since I came to this site. Forgot my password and actually closed the email account where I could retrieve, a while ago. So now I am TruthGenesis2

Looks like my last post was December 3, 2011.

Just had my checkup with the Parkinson's specialist:
No change to meds:
- 1.0 mg Azilect --> one per day
- 100/25 Levodopa/Carbidop --> 3 times daily

Recently, I have added cinnamon powder to coffee in morning. Can't hurt. Read things about cinnamon.
And I also take Ginkgo Biloba about 3 times per week. Very lite dose. Ginkgo Biloba is good for brain.


Physically...
--------------
Don't really feel much change.
- left arm has most trouble.
- right hand, minor finger tap
- jaw tremor. I was getting lots of temperature sensitivity when eating, even bananas. Dentist made me a mouthpiece for lower teeth, to wear when sleeping. Teeth grinding was cause. Sensitivity gone.
- still slight strange sensation in lower left leg.
- not sure if emotionally I am more sensitive than in 2011.

Oh here is something affecting me since 2006. I think I never wrote about. When I watch a movie or tv show, and one character does something nice for another I often fight tears. I cry. Scenes that others do not cry for. And of course I cry at emotional scenes that some might cry at. Never used to happen.

Exercise
---------
- bike to work, sometimes. 2 miles
- other days, wife drives me and I walk home (practicing swinging left arm most of the way). 2 miles
- walk at lunch
- in morning,
- I put wrist weights on and do lite treadmil jog, focusing a lot on left arm swing
- I put wrist weights on and do a fast inclined treadmil walk, focusing a lot on left arm swing
and/or
- I put wrist weights on and do stationary bike and swing arms like running
- lite weights
- situps

Spirit
------
I have a great sense of humor. Love to laugh and especially make others laugh. Luv watching comedians, Whose Line Is It Anyway, and funny shows. Two and A Half Men (with Charlie Sheen)

Still travel much.

Hmmm..... Robin Williams... As I stated in original post, I plan the same once I have progressed too far and meds can't help. For now, I am still very happy and have a great wife.

TruthGenesis2
New Member


Date Joined Aug 2014
Total Posts : 18
   Posted 8/20/2014 6:20 AM (GMT -7)   
I forgot to mention.
I do deal with fatigue and have for some time.  I'm normally tired, real tired, or really really tired.  I've gotten so used to it that I forgot to mention that.  No real update on that.  I continue to fight through it.  I drink coffee which does encourage tremors, but I need the energy.
 
I find my morning workouts help charge me up for the day.  I'm nearly 47 so I can't exercise like I used to, but I make time and effort to keep this routine.  Wake up, drink a coffee, then do the exercise.  It's good for you regardless of whether you have Parkinson's or not.  It's not easy, of course because some mornings I feel less like it, but overall I feel it helps spiritually, physically, and emotionally. 
 

ElTorito
Regular Member


Date Joined May 2014
Total Posts : 22
   Posted 8/20/2014 6:57 PM (GMT -7)   
TruthGenesis2:
 
My best wishes to you. In your initial post you asked "How long can you likely function as a programmer?" And..it is probably a question that nobody will be able to answer. But, I look at Michael Fox. If I am not wrong, he has been with the disease for at least 20 years. Also, diagnosed very young. The guy is still going with a lot of energy and involve in many activities. I know things do not work the same for everyone but lets hope that is the case.
I was diagnosed in April of this year. Doing very well and very positive.
 
 

Post Edited (ElTorito) : 8/20/2014 8:02:01 PM (GMT-6)


TruthGenesis2
New Member


Date Joined Aug 2014
Total Posts : 18
   Posted 8/20/2014 7:31 PM (GMT -7)   
Yes, Michael J. Fox is a good example of determination. He is doing a lot of good. His situation is different. I must function in an office, 9 to 5. He does not have to. Parkinson's affects all wage levels, but I imagine he has access to meds we do not. Just saying... And if anyone should have that access, it is him. We do need him at his best. He is a great man.

TruthGenesis2
New Member


Date Joined Aug 2014
Total Posts : 18
   Posted 11/29/2015 10:08 AM (GMT -7)   
Update:

2014 - Aug to 2015 May
- over past year my symptons increased
- meds wear off faster
- was asked if drunk twice due to manner i walked when meds low
- noise and co-worker walking by or standkinng in view affects my concentration immensely
- in December, my job got moved to a place with smaller cubibles with low dividers and more people crammed into small area.
- i requested accomodation because i knew this would be terrible for my concentration.
Kinda like clausterphobic feeling, i imagine. No real choice in cubicles, but now work one day a week at home.
- people truly don't care so fight PD knowing that
- I have Skyjumped in Las Vegas now. Very cool.
- Dyskenisia starting in left leg and body core
- added punching bag to workout
- summer, bike to work
- rest of year, get dropped off at work and walk 3 km back.
- Had two blood clots in left calf in Dec 2014 after flight back from Las Vegas.
- I am pretty much always tired


2015 - May
- Levodopa/Cabidop 10/25 --> up from 3 a day to 4.5 a day
- Azilect 1 MG - still one a day
- did 200 foot Bungee jump
- Skydived first time

2015 - Oct
- motion sickness increased. My favorite ride is Harry Potter at Universal Studios. Now the combination of moving ride and big screen (non 3D) quickly affects me. Close to throwing up even though roller coasters at Universal, no problem.
- noise and movement distraction affecting concentration more at work. Earplugs and headphones to help block
- muscles hurting more
- workouts tire me more
- headaches more frequent
- Nausea big. Seems to be increased dosage causing
- bladder weak. Must go often. Must plan before getting in car
- constipation worse. work outs targetting, eat more vegetables, Restorelax, bran all to try to target. Had first hemrrhoids in September after flight back from Orlando

- fatigue especially in afternoon happening. Often nap at lunch
- insomnia very bad. Tried exercising more to tire myself out to sleep better. Not working anymore
- got in to see Specialist
- Now
- Levodopa/Cabidop 10/25 --> 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.

- Dyskenisia under more control. But after not having a nightmare in I don't know how long, suddenly I had like 6 in 3 weeks.
I reduced myself done to 4 Levodopa/Cabidop 10/25 per day, and 2 Amantadine a day to help reduce nightmares.
- I've realized that likely my prostate not functioning properly in early 20's may have been early Parkinson's sign
- my nose runs like liquid in cold weather. I realize this to be PD too.

- Nothing happening is a surprise to me. I've known what would happen. I know what will likely happen still. As my original post decribed, I am doing this for my wife. I would rather be put to sleep. Logical thinking, not emotional. I've lived my life doing what I like, lots of travel and now travel is becoming becoming difficult much like every moment that I'm awake.

- Like everyone I am hoping the cancer med Nilotinib (Tasigna by Novartis) is a true breakthrough. I'll give it a few years to be proved. If it's not one, it may be time to set my wife free. I won't be a burden and ruin her life. She will have time to find a new man and continue her future. All these pills going into me every day. This is not natural. And they are not 100% effective. This and the future of increased meds/decreased effectiveness is not the way I will choose to live. Counting on Nilotinib.

I have been happy for many years
I can honestly say I am mostly not happy now. I hide it. It is not depression. It is all about what is happening to my control over my body, my bodily functions, my energy. Even less relief when sleeping. nightmares ruining my sleep time. I still do fun things, but non fun time I face my situation. Don't like it.
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