Update 19 September 2024
It’s the second Thursday I have been on leave in Matapouri with my wife and dear friends.
I have decided to write a diary.. A check-in yearly to assess progress.. at worst it may amuse, at best it may serve as a record of a progressive dementing disease.
Timeline to date:
2002. noticed involuntary tremor of left hand while dancing
“too early to diagnose Parkinson’s Disease.”
2005-2010., intrusive anxiety, tendency to over-reaction of sympathetic system, sweating, tremor, warm periphery, sweaty palms., runny nose.
Restless legs became a nightly affliction preventing sleep for ,up to an hour
Increasing tendency to hang left arm when walking. Increasing awkwardness of left (dominant) hand. Buttoning up a shirt becomes an increasingly fumbling slow process.
All fine movements are affected
2011 diagnosed and started on Amantadine then L-dopa
Commenced on different anti-depressant, Venlafaxine
Became depressed in middle of 2014, following a very painful disc prolapse.
Required to attend a psychiatrist to reassure the Medical Council. Started Escitalopram..gradual lifting of mood.
Psychiatrist now wants me to go for cognitive test.
Starting to hold left hand like a broken wing and doing much more with right hand.
Current Baseline,(at my best as a result of holiday)
I am three kilos of abdominal fat overweight, in spite of which there is now very obvious wasting of dorsal, arm and leg muscles so my overall weight hasn’t changed much.
I have exercised for several hours on a mountain bike most days and had a distinct improvement in strength and stamina but I am still globally weak and my left arm becomes leaden and disconnected, floppy yet stiff, aching
Able to ride the old Coach Road circuit with Rick and possibly as fast as when we did it ten years ago,(in the other direction on worse roads). Can sustain 120 bpm and peak at 140 for short bursts.
Sweating is torrential during exercise and otherwise grossly excessive especially when under stress.
Tremor can become irrepressible when stressed. Varies markedly day to day and fluctuates through the course of the day. I take midday meds and sometimes not .. I have never identified an association with my symptom level, but I’m much more likely to take daytime meds if I’m having a bad day with the movement problems. I have jerking dystonia of left foot which is sometimes there and sometimes not.
My memory of past events long and short seems normal
I have frequent difficulty with word-finding which is a matter of great sadness to me.
I have the usual’ Zone-out” can’t remember your name”, moments as I believe is so common as to be normal.
I feel I have become more detached and uninterested in social gatherings. I seem happy to observe. If engaged by a stranger I am disabled by my sweating, tremor and awkwardness.
My sleep is adequate whether or not I use the CPAP mask. I wake generally twice. It can take meditation and relaxation to get back to sleep. The dreams are the mostly complete narrative and very vivid..often involving strangers.. Also strangely frequent failure in self-management in school or Med School
My back, is a train wreck and I get stiffness and a few butt-aches daily.
My core strength has deteriorated from pain and disuse. I must use my arms and legs together to rise from sitting.
It seems to be mainly weakness in both thighs. Both have wasted markedly.
My bowel is now accustomed to a daily double dose of Macragol and electrolytes and I am rewarded most days.
I have a dry mouth all the time.. should chew gum continually but bad look at work I think.
At work I am managing very well dealing with a difficult situation effectively and decisively. I am well-respected at work except by a problematic relationship with two colleagues. I frequently have ben thinking about work when lying awake at night. I am able to handle several situations concurrently and have not had to resort to the..”one thing at a time..” strategy
So far then the biggest losses have been physical, the weakness , easy exhaustion and poor balance. It is difficult to mountain bike on narrow tracks and I overbalance or lose my control frequently. My only solution is to keep exercising.
I have to consciously lengthen and speed up my stride and arm swing.. I commonly catch myself tottering.
As well as this I am very conscious of the deterioration of fine control in my left hand..the hand is becoming increasingly naïve, forgetting it once automatically undid knots, pegged out washing, did up buttons, opened packaging., Each attempted fine task is an exercise in training the fingers to do what they used to do automatically. And the fingers do not learn , they approach every task as if they have encountered it for the first time.
Written April 2015
It’s the second Thursday I have been on leave in Matapouri with my wife and dear friends.
I have decided to write a diary.. A check-in yearly to assess progress.. at worst it may amuse, at best it may serve as a record of a progressive dementing disease.
Timeline to date:
2002. noticed involuntary tremor of left hand while dancing
“too early to diagnose Parkinson’s Disease.”
2005-2010., intrusive anxiety, tendency to over-reaction of sympathetic system, sweating, tremor, warm periphery, sweaty palms., runny nose.
Restless legs became a nightly affliction preventing sleep for ,up to an hour
Increasing tendency to hang left arm when walking. Increasing awkwardness of left (dominant) hand. Buttoning up a shirt becomes an increasingly fumbling slow process.
All fine movements are affected
2011 diagnosed and started on Amantadine then L-dopa
Commenced on different anti-depressant, Venlafaxine
Became depressed in middle of 2014, following a very painful disc prolapse.
Required to attend a psychiatrist to reassure the Medical Council. Started Escitalopram..gradual lifting of mood.
Psychiatrist now wants me to go for cognitive test.
Starting to hold left hand like a broken wing and doing much more with right hand.
Current Baseline,(at my best as a result of holiday)
I am three kilos of abdominal fat overweight, in spite of which there is now very obvious wasting of dorsal, arm and leg muscles so my overall weight hasn’t changed much.
I have exercised for several hours on a mountain bike most days and had a distinct improvement in strength and stamina but I am still globally weak and my left arm becomes leaden and disconnected, floppy yet stiff, aching
Able to ride the old Coach Road circuit with Rick and possibly as fast as when we did it ten years ago,(in the other direction on worse roads). Can sustain 120 bpm and peak at 140 for short bursts.
Sweating is torrential during exercise and otherwise grossly excessive especially when under stress.
Tremor can become irrepressible when stressed. Varies markedly day to day and fluctuates through the course of the day. I take midday meds and sometimes not .. I have never identified an association with my symptom level, but I’m much more likely to take daytime meds if I’m having a bad day with the movement problems. I have jerking dystonia of left foot which is sometimes there and sometimes not.
My memory of past events long and short seems normal
I have frequent difficulty with word-finding which is a matter of great sadness to me.
I have the usual’ Zone-out” can’t remember your name”, moments as I believe is so common as to be normal.
I feel I have become more detached and uninterested in social gatherings. I seem happy to observe. If engaged by a stranger I am disabled by my sweating, tremor and awkwardness.
My sleep is adequate whether or not I use the CPAP mask. I wake generally twice. It can take meditation and relaxation to get back to sleep. The dreams are the mostly complete narrative and very vivid..often involving strangers.. Also strangely frequent failure in self-management in school or Med School
My back, is a train wreck and I get stiffness and a few butt-aches daily.
My core strength has deteriorated from pain and disuse. I must use my arms and legs together to rise from sitting.
It seems to be mainly weakness in both thighs. Both have wasted markedly.
My bowel is now accustomed to a daily double dose of Macragol and electrolytes and I am rewarded most days.
I have a dry mouth all the time.. should chew gum continually but bad look at work I think.
At work I am managing very well dealing with a difficult situation effectively and decisively. I am well-respected at work except by a problematic relationship with two colleagues. I frequently have ben thinking about work when lying awake at night. I am able to handle several situations concurrently and have not had to resort to the..”one thing at a time..” strategy
So far then the biggest losses have been physical, the weakness , easy exhaustion and poor balance. It is difficult to mountain bike on narrow tracks and I overbalance or lose my control frequently. My only solution is to keep exercising.
I have to consciously lengthen and speed up my stride and arm swing.. I commonly catch myself tottering.
As well as this I am very conscious of the deterioration of fine control in my left hand..the hand is becoming increasingly naïve, forgetting it once automatically undid knots, pegged out washing, did up buttons, opened packaging., Each attempted fine task is an exercise in training the fingers to do what they used to do automatically. And the fingers do not learn , they approach every task as if they have encountered it for the first time.