Motor Symptoms Cured – what happens now?

[Leyther]

I have never feared PD because it actually made my life easier.

I had the obvious motor symptoms for 6 years before diagnosis, by that time I had significant loss of movement on my right side; right arm useless, foot dragging and tremor when stressed.

I struggled on, still working at full capacity in the commercial department of a large engineering consultant, unable to write with a pen, typing and using a mouse with my good left hand. I had changed jobs to improve my career prospects, so I was working outside my comfort zone; I had also embarked on a HNC qualification, a precursor to a degree. I was doing really well; Project Managers looked to me for advice and gave good reports to my manager.

Everything was going great except I was falling apart physically and mentally. My physical difficulties made it harder to do my job, which led to longer hours and more stress. The work often involved confrontation, dealing with belligerent contractors etc; I found this set off anxiety leading me to avoiding tasks I didn’t like. This led to more stress, a vicious circle.

When I was diagnosed it dawned on me that I would not be expected to have to deal with these problems.

It was a huge weight off my mind. PD had actually improved my life!

At the time I didn’t realise that the non motor symptoms were caused by PD, I thought it was just me not coping.

I was off loading work and responsibility which made me feel guilty.

It is only now, 10 years later, that I can look back and see how much I was affected by the non motor symptoms.

Reflecting on this has made me wonder:

Imagine there was a magic pill or process that permanently returned our motor functions but not the cognitive processes.

We could move, like every one else but we still think and act like parkies, without the influence of drugs of dopamergenic drugs of course.

We would still have the anxiety, depression, lack of concentration, insomnia, mood swings, apathy etc. and obviously we would still require treatment for those problems.

How would the public see us now that we can move freely?

Would we still be considered disabled and entitled to benefits?

We could become considered in the same way as ME sufferers, ridiculed as lazy, workshy etc

Something that we may need to consider, should there be a breakthrough in treatment of the motor symptoms.

Leyther

[shasha]

wow what a thought or thoughts

[Helshubby]

Thanks for that Leyther,

Up until September last year i had a career as a Firefighter (Watch Manager = Station Captain in U.S) .I was "forced" to retire due to ,as the OH consultant put it "may suffer from balance problems".They actually said that as i "may" not be able to climb a ladder ,for example , I was "unfit" to be an operational firefighter - apparently i am not "fit" for anything else. Bear in mind , this is the only job i have ever had , and I'm 46yrs old , who would employ me ?

I can still run , and am training for a marathon (Yes ! 26miles !) but struggle to walk around the house . I have developed the rather annoying "Parkinson's voice" meaning i may/may not be able to coherently answer the phone at any given time.

I applied for benefits (guided by the Parkinson's UK rep) and claimed everything i am entitled to - although,even though my ill-health pension from work is not a lot - i often feel i would've been better off never having worked (my own personal rant !!) but was approved and now receive benefits as well as my pension . My wife works (hard) so we are not struggling.

If someone were to suddenly "cure" me ,what would i do ? You're right !! We would go from being "Parkies" to "lazy,workshy scroungers" and the way the UK Govmt is revealing its true colours anything could happen.............

Food for thought indeed ................especially for us "young uns " !!

Keep smiling

Dave

[Hidden]

Good things to think about.

I feel the mental effects of PD hit me before the movement effects.

There were times I could not understand why my brain we sooo foggy and didn't work as it had before.

[chrismw]

Thought provoking. I just can't imagine having one aspect of PD without the other. For me they are so intertwined. Looking back to when i can identify the then subtle symptoms of PD--it's still hard to determine a clear and unrelated distinction between the motor and non motor aspects.

I would predict that with only non motor symptoms PD would have far less respect in the medical community than it does now. As for the response by the government (both UK and US) I shudder to think of that one.

[etterus]

I agree 100%. I find that i am more disabled from anxiety/depression than the motor involvement in the last 4-5 months.

At times I wonder if my awareness of this is correlated to reading all the posts from others confirming the severity of the non-motor symptoms.

[PatV]

My daughter has TBI following removal of a brain tumor. She's almost fine physically but had to go on disability due to non motor symptoms. Between the 2 of us we're almost a whole person :D. Her students were fine but her coworkers were 'mean girls'. Lots of vets coming home with TBI. Your question a good one!