[stevem53]

It has been a little over two years since I began taking a half teaspoon of DM before bedtime in hopes of it offering some neuro protection..When I first began it, I went through a "honeymoon" period, where I was blessed with increased movement, and minimized symptoms..This could probably be attributed to the fact that Dextromethorphan is a dopamine re-uptake inhibitor..But does it really offer any neuro protection?..To this question, in my individual case, I would have to say that I honestly dont know?..But what I do know is that something strange has taken place in the nature of my symptoms durin the past year

For 5 of the 6 years since my first symptom I walked with a limp..Now I either shuffle or walk normally, and that seems to depend on what I have, or have not been doing physically, and how I feel emotionally..The more often I get out and fish, the stronger I get, the more managable my symptoms are..When I am in good strong physical shape, I walk almost normally most of the time, and have fluid movement of my arms and legs..When I hang around in the winter, I am a mess..I shuffle around..I have trouble standing up from a sitting position..I feel uncomfortable in my own skin..I am like a beached whale in bed, because I cant move my mid section..I am weak..I lack motovation, and taking extra medication is usually futile..And if I am depressed, heartbroken, disappointed, and/or anxious, I dont shuffle around..I stumble around..Everything is a physical and mental chore, and all I see in front of me is an endless big black hole..Time stands still..It doesnt pass..I isolate, not wanting to be around people, but instead want to sit in cronic solitude, and instant replay my thoughts, and the events that led to the object/s of my despair, untill hindsight replaces bewilderment with wisdom, and logic..Peace of mind returns, and the symptoms become manageable again..The emotional mind is directly connected to the Parkinsons physical condition..Inspiration and hope, are some of the best medicine for pd..I may seem to be getting off topic of my experiences with DM, but this is my reality..my experiences with pd, and in trying to figure out whether or not I have experienced progression over the past two years, I have to look at what direction my journey has gone..The ideal measuring stick, would be, to have lived a status quo life since my first dose of DM..But I have not..If I were to focus on the moments when I was content, at peace, and in good strong physical via exercise, I would have to say, not only have I not progressed, but I am actually in a state of reduced symptoms..But on the other hand, when Im an emotional wreck, and physically weak because of being a hall of fame couch potato, then I would have to say, I have progressed considerably

But what is the truth about my rate of progression in the obscurity of this multitude of variables?....

In two years I have had two medication increases..I went from 2 x 50/200 Sinemet CR daily to 3 x 50/200 Sinemet CR daily..and from 2 x .25 Mirapex daily, to 2 x .50 Mirapex daily, and I didnt notice one single bit of difference when I doubled the Mirapex..I did however notice a difference when I added the third dose of Sinemet CR..My last neuro appointment last October was the best so far in terms of reduced rigidity, and I was fatigued from fishing earlier that day

What has changed is, when I play my drums, I can raise my right leg to beat the bass drum, for an hour, more or less, and had not been able to do that for five years..at all..I can wiggle my fingers on both hands equally, whereas for five years, everytime I tried to wiggle my fingers on my right hand they would stay almost stationary, and tremor and shake, and felt like they were not connected to my body..I have gained some coordination and movement on my right side, which is my effected side, but however, have developed some dystonia in my right arm and leg that kicks up after 9:00 at night, and causes my right ankle to wiggle like it has taken on a mind of its own, and sometimes I have to chew a 25/100 to make it stop..I very seldom stutter anymore..I can twist a cap off of a water bottle with my right hand now, and in some respects it has more coordination than my left hand..My hand writing is attrocious..I cant read much of my own writing anymore, and I am left handed, my least effected side..My driving is better..(not that I ever was a good driver)..I have also become extremely emotionally sensative to sadness of any kind, and have very little control over it, and as a result get weepy over nothing

So, in conclusion I would have to say that when I am in fair emotional and physical shape..(middle of the road)..I am still doing relatively well, and when I am not in fair emotional and physical shape, pd is a burden..I have been through alot of new lifes experiences in the past two years, and have discovered that pd rides the peaks and valleys of the physical and emotional roller coaster, and that has been the most significant contribution to my overall Parkinsons condition

[Fiona]

Steve, I think this is really valuable information and a good picture of the kind of experience many of us share. It's good to keep in mind, because I think that so often the mental picture we have is one of inevitable, linear decline, and now that there are so many of us who were early onset diagnosees but who have been around for awhile, we can see that perhaps the early prognosis predictions don't reflect the actual experience of having this condition for many years. And maybe one's actual relationship with the condition, or "progresson," cannot be quantified by how many pills one is taking. There are many factors that both affect and express one's status.

Letting go of the rigid expectations of what our situation and course inevitably will be frees us to better construct our own realities and futures.

[stevem53]

I agree Fiona..There are so many variables, and conditions that contribute to the overall status of our physical and mental health..I know for a fact that fear, anxiety, worry and depression will put me down, and peace, serenity, laughter, and happiness picks me up physically..When I am struggling I have to take a look at the condition of my emotional status, and Ive found that when my mental health is bad, pd meds wont rescue me from its wrath