A new normal is the phrase my wife gave to me in the few days after I was diagnosed; meaning ‘we now just have a new life to adjust to but it will be OK’. It conveys a lot including the positivity everyone talks about you need to have with a PD diagnosis.
But I will be honest I am not there yet.
My neurologist, family, friends & colleagues that I have told all, of course, try to help with a positive outlook, focussed on all the successful aspects of managing the disease with the available drugs & alternative approaches (DBS – deep brain stimulation). Then there is the inevitable comparisons to other neurological disorders which have a far worse prognosis. But the fact is being young & told aspects of your brain are dying, which are quite fundamental to living normally, is a pretty difficult thing to deal with. On top of that there are a whole load of things you have to work through about your future , which now has a strange mixture of certainty & uncertainty thrown into it.
I was diagnosed on 20th November 2017, I am 44, married with a 5 year old son & two Labrador’s. I will come back to my diagnosis later.
For now I need to dwell a bit on the negative. I don’t see any harm in it right now, I think I’m entitled too, my wife has said she can understand that. But you’re largely alone in doing so because it isn’t something that people like to hear. Except for my Dad & wife to certain degrees. It isn’t that I can’t be positive or get the point that you need a positive outlook to fight PD. But I need to be realistic and understand what lies ahead to be able to deal with it.
I am writing this retrospectively, in parts (& this bit at 3.40am!) I can tell it will help me & I will find it therapeutic but I am not quite sure what the guiding theme will be ( do I need one in fact?), although at the outset of course I want to contribute to the world of PD & help others.
So the first subject is about understanding PD in realistic and practical terms in regards to your prognosis at diagnosis. This is actually quite hard to find out, information is well worded to avoid causing too much concern ; a little soft soaped in my opinion. For me personally this is not helpful , and despite an understanding that the disease is individualistic, there are inevitably going to be worst case, probable case, and best case prognoses over 5 to 10 to 15+ years. The point is you now need to plan for a significant life change and there is no point in just assuming the most positive prognosis which then turns out to be worst case and not have any degree of planning or preparation for it.
This may not be a helpful approach to everyone but for me I am still searching for answers to my likely path. For example, what exactly is my approximate level of dopamine per my DATScan; am I tremor dominant or rigidity dominant or neither (which may be a factor in indicating prognosis). In essense , you get a sense of sugar coating by not talking about the range of possibilities and of course you spend a lot of time post diagnosis trying to fill in the gaps on your own through research, and not being an expert there is a risk you get it wrong. Having said that I feel that I have been able to gather a sense of what could lie ahead through the online community and online medical research. It’s just I feel the NICE pathway (UK disease management guidelines) is a bit basic for me, and just putting the choicest words and most positive spin is not helpful to me.
At this point I will offer my opinion on the reality (although I have to, of course, caveat it as I am not an expert).
PD is a serious degenerative disease which will have up to* 10 years of relatively mild impact, albeit with increasing levels of meds. You have then up to* another 10 years of more disabling disease possibly with severe levels of uncontrollable movements as a combination of the disease itself and side effects of the medication. You then have up to* another further 10 years depending on how lucky you have been in disease progression over the first two decades. If you have mainly tremor dominant symptoms you possibly progress slower , if rigidity is your dominant system you have a likelihood of faster progression. So life expectancy is likely to fall between 20 and 30+ years. A moderate level of disability is reached 5 to 10 years post diagnosis, longer for the outliers who will live for 30+ years. There is a potential option to opt for DBS when significant disability is reached, which will massively help quality of life, but the underlying disease course is not altered.
I don’t know if the above is fair or not (but given I can’t find it or haven’t been given it) it is my assessment for now. *Of course the phrase ‘up to’ is key as the progression is variable & highly individualistic.
I have read some other great blogs about PD which I may mention at some point. So I don’t think I am alone in this assessment on prognosis, or my conclusions so far. But please comment: in the immediate post diagnosis phase did you get the right level of information relating to prognosis?
PD is not curable and although the global level of research into many different aspects is impressive, the root cause is still not known; this obviously makes it very difficult to find a cure and currently there are no real treatments proven to slow disease progression. Genetic links have been identified but there are a number of different genes that are associated with PD which possibly means a number of cures or treatment types are needed. So there is, in my opinion, a lot to do before we see a cure. Unless there is a lucky break (which given the levels of research is not so unlikely) I would say we are 10 to 25 years away from something better than Levodopa as the big gun to treat symptoms.
What I have come to appreciate is that neuroscience is fascinating but there is so much still not understood about the brain, it’s deeper level workings and the systems and pathways that make us the individuals we are. So by writing this I think I have a theme emerging for my blog……it will be my journey into the brain as a patient & now keenly interested reader. I hope my ramblings will help contribute something to the world of PD, be that patients or interested readers!
Back to a new normal! It’s true, as humans we are programmed to adapt and find a new path, a future with a chronic disabling disease. The general community of PD blogs or chat forums are incredibly supportive and positive. We are all fighters in truth, may be to different levels, but fighters none the less, all learning to live with a new normal!