my latest blog....if u care.....
apathy: my latest blog....if u care... - Cure Parkinson's
apathy
"Interesting. So perhaps I do care but, because I can’t care, I think I don’t care. Or you think I don’t care.
But I do."
I could have written that, if I were more articulate. We're in the same boat, my friend. It helps just to know that others are going through the same ordeal -- I think the apathy/fatigue is actually the worst aspect of PD (although there are many contestants for that award), and all I can do is suggest that we can help motivate one another.
Very well written . I suspect that motivation is an issue at one point or another for most. For myself, I get motivation from others. Find and join a Support Group that has an ongoing structure for sharing challenges and celebrating victories on going. Often as a result, motivation is contagious, catch some.
BillDavid
Very well-stated blog-post. One of my dopamine precursor supps describes it as "a neurotransmitter that promotes enjoyment and interest in life". Beyond this, dopamine is behind a process known as "executive function" - the ability to plan, organize, and execute goals/tasks (google 'executive function and PD'), all of which, of course, requires the critical component of motivation. In us PD folks, it now requires discipline and the strict force of habit to compensate for what once came naturally...
I do not think your apathy is part of Parkinson's. More the sense of hopelessness that can come with Parkinson's. I don't have Parkinson's but I am a Carer for my wife who has PD. I just don't care about anything, I am just going through the motions of living. I tell myself that if I did not have to look after my wife, I would do many things, but I am just kidding myself. I am just old (81) worn out and tired.
This is something I've been struggling with for some time, along with difficulty in focusing on tasks, memory and ..... case in point - I just got stuck there - sitting staring into space for the last five minutes trying to think what it was I wanted to write.
I'm finding work really difficult/impossible just recently, I'm not able to complete jobs as I used to. I'm a graphic designer for a local authority, have been for the last 27 years. I'm having to complete more and more work at home as I can't get it done in time. I feel bad as I'm missing deadlines, finding it difficult to prioritise jobs and keep to schedules, clients are getting more and more fed up and I'm getting more and more stressed.
It's hard because it's something they can't see - I look fine from the outside, bit like the swan, calm on top, paddling like mad below water. I do know that something will have to give soon, I just can't keep this up much longer. I know it's not my fault but I feel guilty that I'm letting people down - both at work and at home. I have two teenage kids, my daughter is 14 and my son is almost 16 and due to take his GCSEs next summer. Their dad, my partner of the last 21 years, finds it difficult to understand - we are in the process of splitting up at the moment, selling the house, going our separate ways. If he can't understand/empathise, how can anyone else. I'm finding it very hard to be optimistic.
The one plus point at the moment is the occupational health appointment I had last week. I was seven minutes late (story of my life, was trying to finish off work before the appointment as I had a deadline and time just vanished, leaving me sitting on a bus in traffic on London Bridge, stressing). The receptionist phoned through but the doctor refused to see me. I asked to speak to him and he came through to reception. I explained the situation and he still said he couldn't see me at which point I burst into tears, everything just caught up with me. I couldn't stop sobbing. He ushered me through to an office and the receptionist brought me tea and I just unloaded everything, work, family, health, future, feeling guilty, trying to keep up but all the time falling further and further behind, all the stress and distress through renewed sobbing, I just let it all out.
It was actually quite cathartic and in the end, for the best. He said he could see that things couldn't carry on as they are, that I'm not coping. He mentioned part time work but I couldn't do that - firstly I can't afford to go part time and secondly (as he recognised), I'd end up working over my hours to catch up and make deadlines. As he said himself, I'd probably end up working full time hours for part time pay! The long and the short of it is that he is recommending ill health retirement. It's something that's been at the back of my mind for some time. It will allow me to have quality time with the kids (I'm always too tired after a full days work to do much), to do house work (ditto), to go for a swim or just have an afternoon nap when I need one.
I'm waiting to see what the next step is - hopefully it will all be approved. Hearing the doctor say that he was going to recommend it was like a weight off my shoulders. Although I know that apathy, concentration and fatigue are not my fault but symptoms of my condition (not forgetting the physical symptoms!), I'm still the one that has to pick up the phone to clients and find an excuse to explain why their proof will be late or their job delayed. The client doesn't care that I have Parkinsons, why should they, they just want their job done, so I don't feel that I can 'blame' Parkinsons every time (even though, rationally, I know that it's the Parkinsons that is the cause of the lateness/delay I still feel that I have to make an excuse). Crazy, I know, but hopefully not for much longer.
Sorry for the rant but it was just good to see someone else mentioning apathy as a symptom and realising that I shouldn't feel guilty for feeling apathetic!!!
wow - u really have a full plate! i can certainly relate to the stressors u find urself under. i "retired" from my work for much the same reasons about 8 years ago (an elementary school teacher) - i have missed the kids tremendously and the social interaction with colleagues but the time had come and, for much the same reasons, I did the same thing. I'd encourage u to maintain social contacts u have and keep up as active a life as possible - perhaps even doing ur own graphic design work on the side as u feel able or lend ur talents to aa non-profit as a volunteer for few hours a week. who knows - if i ever get my s--- together on a book i'd like to write, i might be in the market for a graphic designer
anyway, thx for reading my blog and thx for sharing ur story. hope it works out for u. all good things, rk
HI there. Just wanted to touch base and see if things have improved over the past several weeks..i was being interviewed yesterday for a radio program and was asked about the challenges face in my life with PD and I thought, you should be speaking to people like urself who are under so much more pressure...hope u r holding up! cheers
Hi Imshakydad,
Feeling much better, more positive, thanks for asking.
After my employers received my OH report they wanted a 'fit to work note' from my doctor before I could go back to work. Luckily he's a very good and understanding doctor and he signed me off for 3 months. This has been an absolute life-saver as both the house sale and my onward purchase are going through at the moment and I've a lot to organise and arrange. The moving date is set for 22 September, a little daunting as I have a whole (very stuffed) house to pack up, all the services to notify, paperwork to still complete and found out yesterday that I need buildings insurance in place by the date of exchange (15 September).
More stress, particularly as I still haven't heard from work or the OH provider regarding the ill-health retirement. This affects my house purchase as I can no-longer get a mortgage due to my unsettled circumstances and I need to use the lump sum from my pension to pay the balance of the purchase costs. Nothing's ever simple, is it!
Better go and get on with packing!
Will let you know how things go.
Suzanne
very good (but very busy). sounds like the kind of busy that will net positive results all around in the end. just a quick note to maybe help with insurance - arranged insurance (here in Canada) with an on-line insurance co called SquareOne - don't know where u r located but if ur out of canada, there may be something similar where u live.
Good luck at this bus time and my very best as u move forward! cheers rk
Thanks shakydad for your excellent post. I agree with all you say and pretty much everything in the comments. I'm a little over 10 years into the fight with Parkinson's and my motor symptoms are pretty mild/well controlled (sinemet plus x 5 daily). I had a few years where hypersexuality dominated my life. Since I ditched dopamine agonists apathy and fatigue have taken over as my dominant issue. I know what I want to achieve both in and out of work but I struggle every day to focus on doing it.
I feel like the impact of apathy is less well understood than many of the other symptoms. I'd love to hear what strategies others have found for dealing with apathy and related effects.
i used to be apathetic but now I don't give a damn.... It seems very strange to me that I have a weird brew of anxiety apathy and depression. I'm struggling with it by taking on our local support group, drum lessons and tai chi to start this week. I'm going to pursue this topic for the group soon.
good on u - thx for ur interest and ur comments - hope that works for u! tai chi is one I've been toying with for awhile...maybe this Sept...cheers!
I was the motivator. Most things that are fun require a certain effort and work. Camping, boating , hosting a dinner , going to a dance or concert. The family often complained when we were on the road at 5 am heading someplace new and wonderful. Now my wife intimates that I am lazy, I am not taking on as many projects , can't remember the last time I went anywhere. The new row boat is half built and lays there like a giant witness to my inability. I try, but I can't keep a thought in my head and its always time for a nap. You are not alone , Thanks because I was starting to think I was or might soon be. The race has to stop sometime, but that means giving in or giving up and I am not there yet damn it. Close sometimes but not there yet.
You are not alone -
I must turn my thoughts to others that love me:
1. wife that needs me (she also has health problems)
2. my children and grandchildren
3. my wife's Rat Terrier dog
4. my six cats
No hobbies. Sold our two horses. No row boat. Fear of the now and the future.
Funny how an outsider, totally removed from the situation can spot the problem immediately while the person with the problem does not see it.
SIX CATS ? You got rid of the horses and kept SIX CATS ?
As Earnest P Worrel would say " EEEEEYYWWWUUHH
We love you RoyProp
Just hard to get used to the beard
Be happy
I enjoyed your reaction
i hear u and am again surprised at the similarities except for the unfinished boat i have lots of other "unfinished" or "to-dos" I'm neglecting though. thx for ur interest and for sharing some of ur story! good luck! rk
Hi Shakydad. I have read this before and understand lots of the causes of my, and everybody else's apathy, but I will not accept that we cannot beat this.
I also have read that when we walk hard, the endorphins we produce make us feel good and that helps us to do the best thing we can possibly do to get us out of this mess.
Don't give up, it really does work!
John
Hi. I don't know how many of you live close to any of my stops on my speaking tour in September & October. I am talking in Southern England, New York, LA, Hawaii, Seattle, Chicago, Toronto and Amsterdam. If you want more information please email me - johnpepper@telkomsa.net - and I will put you in touch with the local organizers.
Thanks everybody.
John