Acceptance


#1
Each person’s journey to acceptance of a disability is unique to them but the terrain may have similar landmarks. I will attempt to describe my acceptance of Parkinson’s.

It started with the observation that my physical symptoms made me feel I was living immersed in treacle. Every movement was fighting against the limitations imposed by the disease. It can be distressing to acknowledge your limitations. However, out of this came the realisation that my body may be restricted but my mind is free. I can think and feel and have a rich mental life despite my Parkinson’s. Therefore, my diagnosis hasn’t consumed who I am. Because of the preservation of at least parts of me (both physical and mental), I realised I still have the self-will and power to choose. Importantly, I can’t change the fact of the disease but I can choose how to react to it.

Next came the difficult issue of the prognosis of Parkinson’s. Prognoses are based on the accumulated knowledge of historical cases. Due to its historical nature, the prognosis of Parkinson’s has yet to include my case. Therefore, it can only be a guide to the progression of my disease. Individuals have individual symptoms; mine is a unique instance of Parkinson’s. It follows that a prognosis does not predetermine my future.

This leads to the following conclusion: there is space for me within both the diagnosis and prognosis of Parkinson’s. What should be done with this space? I can make adaptations in my life to resist the physical symptoms. I can also enjoy the mental life this space provides.

It is impossible to accept a diagnosis when it overwhelms you and obscures self-perception. Acceptance comes when you claim a diagnosis as yours and in doing so acknowledge the preservation of who you are within that diagnosis. Acceptance is living alongside a disease.

#2
Hello Dr Jonny and welcome to the forum,
You are absolutely right that your edition of our designer condition is unique. You describe a very positive attitude to the condition and this is something that you will find very helpful in the years ahead. I have heard this attitude described as 'I have Parkinson's - It doesn't have me'.

Many people have found it helpful to share their experiences in this forum. I have also found it helpful to volunteer for research studies. There is a comprehensive list of studies looking for volunteers on this site under 'research' and 'get involved'.

Many of the studies are purely observational, they are risk free and pain free and newly diagnosed people are especially valuable. Nothing makes me feel better than the feeling that, in some small way, I'm helping kick Parkinson's into touch

Elegant Fowl

#3
I also find it helpful to cut and paste uplifting and helpful posts to read again in case of dementor attack. Just added these two.

I agree with EF about getting involved in research projects. I've found it very helpful.

#4
Hi everyone
I will not accept a disease that's robbing me of my lifetime dreams and that it trying to stop me enjoying life.youve got to have upperhand.to keep in control of your life.i hurt like hell but I will keep mobile to try and help my family as much as I can.nobody accepts what they don't want.

John

#5
Hi John

Acceptance isn't about wanting a disease. Thats a false choice, nobody wants Parkinson's but (like me) you have the disease. Acceptance is about understanding your situation and seeing you can still be the person you are despite Parkinson's. Acceptance is living alongside a disease, whether you want the disease or not. I understand your situation and your anger and pain. I felt the same. But then I realised the Parkinson's wasn't making me unhappy, my reaction to it was. You have a choice to focus on what has been taken away or the possibilities that still remain. Thats your choice.

dr jonny

#6
Hi John

Acceptance isn't about wanting a disease. Thats a false choice, nobody wants Parkinson's but (like me) you have the disease. Acceptance is about understanding your situation and seeing you can still be the person you are despite Parkinson's. Acceptance is living alongside a disease, whether you want the disease or not. I understand your situation and your anger and pain. I felt the same. But then I realised the Parkinson's wasn't making me unhappy, my reaction to it was. You have a choice to focus on what has been taken away or the possibilities that still remain. Thats your choice.

dr jonny

#7
Hello Dr Jonny,

I have been disabled since my late twenties due to a back injury whilst working at a hospital in the seventies, I was virtually unable to walk stand or sit for anytime time at all eventually being confined to bed for eighteen whilst awaiting for a consultant app and operation eventually seven years later. Before and after the operation I was not given any support or physio, so we paid for some ourselves which we could ill afford at the time. I ended up having to use a wheelchair and only going out when someone was able to push me,then got an electric one to give me more independence which was very necessary as by then my husband had been diagnosed with pd (a year after my back operation)I was 36 and he 38 almost 39.

Whilst I agree with what you say having the right attitude is very important, but when you are talking about living with PD it is much harder as the years and progression go by to be able to keep that up just because by its very nature the condition is so complex affecting so much of the body and brain. I have watch my husband over the last thirty years trying so hard to have a life with pd but he has always been fighting this condition when if he had worked with it our lives would have been better but for some reason he can't do that and who am I to blame him, I don't think I would have survived going through what he has and although I have dreadful pain to live with, it doesn't compare with pd on any scale.
So whilst I agree with you to a certain extent I have seen too many good people suffer for too long to be able to keep it up.
I certainly don't wish to throw cold water on your positive post but I have to be realistic in order to be fair to everyone struggling.
best wishes
vivian

#8
PS,
Sorry I meant to say I can and have that attitude to my disability but my husband cannot.

#9
Dear Vivian

Thank you for the reply. I didn't mean to underplay the struggle of others. I was diagnosed this year, I'm 33, and I've been suffering for about 7 years. So this is were I'm at within the disease. I find it very hard too. With my post I was trying to describe the process I went through to achieve acceptance of my Parkinson's. I firmly believe there is choice in Parkinson's even as my symptoms get worse, if only choosing to think positively.

I wish you and your husband well

dr jonny

#10
Hello Dr Jonny,


I do agree and accept all you say and I am so sorry you have this really difficult condition so young, I think my husband had at about the same age but was diagnosed at 39 in the end. The problem as I see it is the drugs have such an affect on some people's thinking that they are not able to help themselves, my husband is now 69 years of age and has been very keen to keep busy with different hobbies since having to give up work at 46 yrs old just when he was going up the career ladder. We have had a busy life with running a branch and being involved with the younger group of our day as well as giving talks to different professionals but sadly there is still such a lack of understanding and no nursing homes that can cope with early onset pwp's in our area and I doubt many in the whole country, that is my sadness after all these years so I do hope you have better success at changing things for pwp's in the future.
All my very best to you and keep strong.
vivian

#11
belive me when i say "accept parkinsons"is becoming a far too familiar term,and after much thought im willing say this,it means to allow, give way or space too....and if i have to achnoledge parkinsons really flipping is going to stop me doing the things i want to do at certain times which i have no control over, then ill accept that, because i shall face no other option , but accept parkinsons??????
no ,not me.....does that make sence.

#12
Hi nicky

Accepting Parkinson's isn't about giving yourself up to the disease. Actually its the opposite. Its gaining some control back and living alongside Parkinson's. I can accept my Parkinson's because I see space for me within the disease, space to gain control by choosing my reaction to it. Allowing yourself this choice starts to make Parkinson's live alongsideable. Acceptance also helps to prevents us expending energy (which we can ill afford) on raging against Parkinson's or trying to push it away. I would much prefer to focus on the control I have than the control I've lost. Its just kinder to myself.

I hope this clarifies what I meant by acceptance

dr jonny

#13
Acceptance is all very well, and I have had to come to terms with the fact I have PD.

But that doesn't stop my shoulder from hurting, my feet from cramping, my leg feeling so tight it can't stretch any more and that is just the motor symptoms!

Getting up for work is a daily struggle, fighting against exhaustion every afternoon is not much fun either.

Trying to prepare food, clean the house, drive the car, type, write etc, are all effected and made more difficult.

What I find hardest and extremely patronising is someone telling me, without knowing me, what I should and shouldn't be doing or feeling !!!

I work with families who have children with disabilities and if I spoke to them like that I would expect to be asked to leave!!!!!!(or smacked on the nose) people are entitled to feel how they feel without someone telling them they are doing it wrong !!.

#14
Thank you for your replies.

I was merely describing the process of acceptance I've been through with my Parkinson's. What I write about isn't compulsory for you to do! I was describing it as one possible way, the way I found, to deal with a Parkinson diagnosis. Of course Parkinson's is very, very difficult, I have my own Parkinson's to deal with. But I find living alongside the difficulty and feeling I'm not being my disease (there is something of me left) helps me get out of bed in the morning. Of course I describe my situation. It might be different for you, acceptance may not be helpful. I describe acceptance as one possibility that helped me.

dr jonny

#15
I'm totally with Caroline211 on that. Find all this positive thinkinging admirable, but not necesserily helpful, and often exclusive. You can't join the club if you can't pretend everything's fine and you're coping just great!

#16
dr Jonny, Acceptance is a long journey involving denial, anger, bargaining, despair and many other emotions. I don't think it involves a lot of choice, whatever we might like to think. It's also virtually impossible when cognitive changes are a part of one's Parkinson's experience. Some people don't have the choice. I'm glad you feel you do, but I'm not sure how he helpful that is to those who are'nt there yet. I know you're trying to be helpful, but there are people reading these posts who are a long way from acceptance, much as it would be a good place to be.

#17
Dear Fluffster

I agree that what I write about isn't going to be universally valid (I never made that claim). But if I've raised the possibility of acceptance of Parkinson's, that living alongside it helps me to emotionally cope with my disease, then my posting was worthwhile. It is by raising questions (especially those leading to self-examination), even if you reject them, that progress is potentially made. Your posting shows you've thought about the possibility. Thank you for doing that.

dr jonny