Mourning the loss of yourself

When I was diagnosed with Parkinson’s I went into mourning for the loss of the person I thought I was and for the loss of the future I expected to have. There is said to be five stages of grief and mourning: -


My first reaction to being told I might have Parkinson’s was disbelief, “how can I have a major disease like Parkinson’s?” Denial is understandable because Parkinson’s is rare (even rarer for early-onset) and there is no definitive diagnostic test. The diagnosis is difficult for Doctors because Parkinson-like symptoms are present in other diseases; the method of diagnosis is to eliminate these other diseases and by default the possibility that remains, Parkinson’s, must be the cause. Also, due to the complexity of the genetics you are unlikely to have an affected relative so it can be unexpected. It is natural to reach for denial when faced with the challenge of coming to terms with a disease that is chronic, incurable and progressive.

I could move through denial because I was diagnosed by a group of experienced consultants and I can see and understand the symptoms in me. However, the thought does cross my mind that maybe I haven’t got Parkinson’s but I quickly close down that train of thought because it doesn’t help me to cope with the symptoms I do have. Denial is a barrier to helping yourself.


An understandable reaction to the injustice of Parkinson’s is anger, “Why me?!” Because I reacted to my stammer with anger, I knew such a reaction was self-defeating; by engaging with the anger it becomes a potentially endless fight with yourself because the fact of the disease cannot be changed. I was determined this time to channel that anger into coming to terms with Parkinson’s; the disease is just part of my thrownness and as such nobody (including myself) is to blame and therefore such anger is aimless and can be left to dissipate.


It is difficult to bargain with the chronic, incurable and progressive nature of Parkinson’s. The loss of neurons in my brain is outside of my conscious control and therefore I cannot offer anything to stop this from happening.

Sadness and Depression

Sadness for the loss of who you thought you were can become an all-consuming depression. Having gained understanding through previous episodes of depression, I could overhear my depression as just one of many possible reactions to my diagnosis. I am still free to choose a reaction despite my Parkinson’s.


It is a particular feature of mourning for yourself that doing so means you are still capable of some kind of action. Being diagnosed with Parkinson’s doesn’t mean you lose the ability to choose; the loss of one expected future leaves space for another. There is still something left to do. This insight makes acceptance easier to achieve and brings the mourning process into a better context.

dr jonny

absolutely - i always say to people don't expect to reach the last stage for several years - but being aware of the mental process is helpful in knowing that acceptance will come (usually!) at some point and that anger etc are natural temporary reactions to significant change.

HI, I do not disagree entirely with Dr. Jonny. But,in my case it was proven that I inherited Parkinsons from my late Grand mother. As far as I know at this time I have no other relatives with Parkinsons. But I believe that it does not mean that the gene could be passed down and relatives from future generations could develop the condition.

Hi Blue Angel

Does it help you to know the genetic cause of your Parkinson's? I've read that Parkinson's is a complex disease and currently only 3% of Parkinson cases have a known genetic cause, thats why I said its unlikely for sufferers to know an affected relative or the causative mutation(s) and be able to trace it in their families. I'm the only sufferer in my family.

dr jonny

Hi Dr. Jonny, Yes, it does help to know I inherited the condition from my Grandmother. This was my fathers mother , but the condition has skipped a generation as none of my fathers siblings, or my father developed the condition. Myself,I had early onset of the condition I was diagnosed in my late twenties, but I believe I showed early symptoms in my late teens. None of my cousins have developed the condition.

Hi blue angel
I've been dx with pd stage two at 54 yet like you I can trace symptoms back to my late teens.i get alot of People saying that I couldn't have had it that long because I would be worse now.but they don't know how bad I am .is there any other members in the forumlikethis I t would help to compare.john

Good Morning dr johnny,
The description you give could have been my reaction, it matches my feelings
exactly, I hate this dammed disease with unbridled venom but have channeled that
hate into a force to be reckoned with, forever setting impossible goals and targets which I more than often fail miserably at, which strengthens my resolve
and so I end up as the Immovable object in the path of the unstoppable force,oh
what fun it is NOT.
I enjoy your frequent and knowledgeable posts , with Regard to the causes I think
crop spraying and Organophosphate exsposure in my case

Kindest Regards Fed

I am not sure I have gone through all the processes you mention. I certainly felt the disbelief, "I can't have this". I had convinced myself that I had a trapped nerve or something.

I felt so ill with the meds initially that I don't know what I was feeling. Until the last couple of weeks I would tell you that I have accepted this thing but now I am not so sure!

I feel I am turning into a different person. I am behaving in unfamiliar ways, not just physically, I expected that, but the other side of things is more difficult.

I don't want to be this person, I have to fight the urge to spend constantly (which I am winning) and I also want sex every day, this is harder to fight and it just isn't me. I can't imagine it is the Requip XL, I only take 6mg a day, so perhaps it is the physical and emotional reassurance I need, I don't know. My husband is worried I might go looking elsewhere (I never would)and I just don't recognise myself any more.

Hello Caroline,the changes you mention are familiar to me and can be reversed, it
is most urgent that you contact your Parkinsons Clinic and press them to alter your drug regime as you are obviously horrified by the terrible out of character
feelings and behavior which can lead you into danger. I was badly affected by my
drugs and was rescued by my nurse consultant, It could easily have cost me my marriage, the drug that caused the chaos in my case is now banned as it was the cause of many serious incidents.I hope all goes well for you.
Kindest Regards Fedex

Hello Caroline, Fed has given you good advise, you really do need to see your nurse/neuro. I took Requip/Ropinerole for about 4 years when I was first dx 11 years ago, my neuro pushed me up to 30mg on my meds and I started spending, like you. As my behavior was changing very slowly it wasn't that noticable for some time and over a period of time I became like Jekyl and Hyde.In the end I bankrup us and we are still suffering financially as a result. You have recognised that your behavior is changing and that's a good start, so please, get some help before it's too late.

If you would like to contact me for a longer chat, you can private message me, I will glady offer you all the support and information that I can.


Thank you fedex! I hope what i write is useful.

Thank you to fedex, glenchass and caroline for giving an example of the power of the forum - people willing to share and people willing to help.

I wish I was the only one with this disease so others wouldn't have to suffer. But others do suffer so we try to shoulder some of their burden by sharing the insight we gain from our own battles; thus, giving some sort of meaning to our suffering.

dr jonny