Is there a typical progression path?


#1

My symptoms are fairly light:

* Limited right hand side motor skills (I refer to it as a lazy side)

* mild facial impassivity

* bradykinesia (significant in finger taps)

* cramps

I also get pains across my upper back, but this could easily be a result of the years of bodily abuse, sport and the more general aging process, equally it could be a result of my condition.

I have, for now at least, declined the offer of medication (offered dopamine agonist by neurologist) as I am fairly compulsive by nature, and have possibly been borderline with regard to both alcohol consumption and gambling in the past. Scary stuff.

What I would love to understand more are the likely progression paths my symptoms might take - I have taken the DNA sampling to understand my chemical composition more fully, but given there are no Parkinsonian genes present, am at least comforterd by the fact that if anyone caused it, it was me by my life choices.

I'd really appreciate hearing from anyone who started with limited motor skills and how the symptoms changed over time ... are there any specific "markers" or DIY tests we can do to measure how things are progressing? and indeed keep track of to discuss with neurologists or Parkinson nurses.

I still find the whole thing slightly overwhelming, but finally fessed up to a friend with cancer the other day. He's the first person I've felt able to tell.

Living in hope that the scientists can find something sooner rather than later to control or cure the darkness within.

 


#2

 

Hi Drewster

I was DX with parky in 2011, and I refused meds until 2012, on my second visit to the neurologist. By this time my symptoms (the same as yours) had increased and I had slowly gone down hill. I had become depressed and  my cramps got horrendous, the strength in my arms and legs had decreased, my motor movements were worse. It was then I knew I had to start medication, and the result of taking them was fenominal! I wished I had started on meds sooner! I am taking a dopamine agonistic, RopiniroleXL slow release 12mg,which I get on well with. But as you have been told it does not suit everyone, it would be best to get in touch with a parkinsons nurse or parkinsons support worker to explain things more, as well as your neurologist.

Thats my rendition of my parkinsons, so follow your own signs on how you feel, everyone is different.

Regards Sheffy


#3

Drewster,

P is not caused by your previous life style choices, IMO. If they were, I would have it, I do like my G&T!!!

Not a gambler or a compulsive.

My OH who was diagnosed over 16 years ago, aged 47, has only ever drunk a half pint of beer or one glass of wine and now hardly drinks at all.

P progresses at a different rate with everyone so sorry, I doubt anyone can give you a definitve answer to your queries on progression.


#4

At 49 you're considered to have young onset Parkinsons.  What this seems to mean that just supposing people with Parkinsons all lived to the same age eventually, the younger you start noticing the symptoms the slower it seems to progress. This is just an observation, everyone progresses in their deteriorating health at different rates. The key is to do what you can while you can.

I'm also not alone in noticing Parkinsonsis a very 'jealous' condition.  I've had ulcerative colitis since 21 that was moderately active and generally a right p i t a.  Along comes PD and now I'm on a low maintenance dose of anti inflammatories and it's like colitis has deferred to the alpha condition.  

Wherever the 'cure' lies I'm personally more and more of the view it lies in the mysteries of the auto immune system.  It's like PD is causing it to kill off all other threats by attacking the cells that drive mood and motor activities, shutting down the transport and communication links so to speak. This doesn't answer your question but does show how PD doesn't seem to stop your imagination.  Maybe that's why we need to take extra care when and how our imagination breaks through into reality.  Time to end this post methinks.