I have had Parkinson’s for 13 years and in the first 10 or so years I had nothing to complain about. But lately I have felt really awful. I get approximately 2/3 hours in the morning when I am myself then it’s downhill with verbal diarrhoea not Tourette’s as I make sense but family and general public give me strange looks. I cannot drive any more despite spending a lot of money on various control systems due to dyskinesia. I writhe and twist and ramble on. I get to sleep and wake at 2 a.m. I lay there unable to read or concentrate on anything. I have very dark thoughts at this time and cannot see the point of living like this. I have tried talking to my husband but he is a happy fellow of 80 and I do not want to depress him. I continue to run the home to my usual standard but I just want to give up. I have no friends and if I plan to go out I am stressed before hand as to how I am going to function and often cancel. I have just had a false widow spider bite which has affected my immune system and 8 weeks on it is still septic. I cannot see a doctor as we only have one for a large area and two nurse practitioners gave me the wrong meds as they had never seen such a mess that my arm is in. I am depressed and cannot see a time when I feel joy in my life again which is sad because I have always been a half full person. Does anyone else have these feelings is there any hope that I will be me again and forget I have Parkinson’s. I am particularly down over the mainly male PD sufferers who have wives who do everything for them. Where are all the women with PD who struggle to keep the home fires burning. Even my husband said that Jeremy Paxtons recent documentary was biased with little or no input from women. Any helpful suggestions would be appreciated or is this how Parkinson’s ends.
Hello farmer’s wife
If I remember you correctly from a previous post we are both lefties!
I am sorry that you are having such a horrible time at the moment and I’m not sure I can be of much help if I’m honest. You may or may not know but for me the most important thing is to try ànd stay positive, I work hard to maintain this and it has worked for me so far. However like all of us with Parkinson’s our future is unknown except that, as things stand, we will deteriorate in some shape or form and no coping strategies come with 100% guarantee; given this I am acutely aware that my optimism about managing my Parkinson’s may well be difficult if not impossible to maintain - that’s assuming I haven’t developed a dementia and am still able to think for myself. It is not a nice prospect and as, like you, I am inclined to be a glass half full person I would think that makes it doubly hard to cope with what you are facing now. I would probably feel much the same and I admire your tenacity in continuing to maintain your home despite everything. None of which is of much practical help nor answers your question which i suspect is the same as everything else when it comes down to it, namely it’s very individual.
I can say you are not the only one to have really black thoughts as can be seen from some recent posts to the forum and maybe someone will chip in on seeing your post with a better understanding than I - I can appreciate why folk can feel that way but haven’t had such thoughts myself.
I also think it worth giving the helpline a call. I feel sure there must be some way of getting you some help but given your circumstances and the difficulties of accessing your GP or medical services it is difficult to know where to start and they have many resources at their disposal which may be able to set you off in the right direction.
You raise an interesting question about the different experiences of men and women but that’s a whole debate of its own
I am so sorry I can’t offer any real constructive way forward but do sincerely hope this is temporary and that your joie de vive returns soon.
Do take care
Hello Farmers Wife
I am saddened to read your post and feel your frustration and isolation. It is my husband who has Parkinson’s so my input is generally observational.
How horrible to have to deal with a spider bite snd then be given the wrong medication. As accessing a GP or practice nurse near to you have you tried the nhs 111 service or I have found much better the nhs LIVI doctor video call free service (if your GP has signed up to this service). We have found it to be superior to or actual GP. It is accessible via an app. You only mention your husband’s age and on the basis using an app (smart mobile telephone application or on an iPad or computer) may not be your thing. If they are I would thoroughly recommend because any infection is going to impact your Parkinson’s as your body is using it’s resources to fight the infection rather than use Dopamine to function well.
Have you considered undergoing Deep Brain Stimulation, a discussion with your neurology team maybe ?
Depression you mentioned is also a Parkinson’s symptom of course add being unwell and it sounds like another conversation with doctor required.
Have you investigated if there are any local Parkinson’s support groups near enough for you to attend May offer somewhere to go and talk to other people.
You sound like a very resourceful farmers wife as your name would suggest probably used to running not only the home but a whole lot more needing a little bit of support to see you through a rough patch.
The Parkinson’s U.K. Helpline is a wonderful resource available to us all, give them a call.
As for the imbalance in women and men with Parkinson’s as TOT says this is a whole separate discussion but like most things in life our whole medical profession and their attitude to treatment is based on treating men first - with the exception of childbirth …. Perhaps .
The Jeremy Paxman programme did little to reflect the life’s of the majority of Parkinson’s suffers or indeed their carer’s - showing Sharon Osbourne as a typical carer had me screaming at the TV with frustration. The reality of being a carer is far far far different than she portrayed.
I hope you find some help through this period that sees you back feeling yourself and puts you in contact with others generally Best Wishes
Hi Farmer’s Wife,
I don’t know if you’re still following this post but I’m just wondering how you’re doing?
I tried to write a response when you first posted this but I couldn’t find the words however you have been in my thoughts since then.
I’m not sure I can say anything useful but your words did cause me to reflect on a few things.
I have experienced some rather bleak thoughts at stupid O’clock (in the early hours) in the past and eventually accessed counselling when I struggled to find a way out. I ended up self-funding - I was lucky that I was able to afford it at the time - but it was worth it because I found it pretty useful in terms of having a safe place to voice some of my less positive thoughts - although some of them still escaped on to the Forum and I remain very grateful to those who responded.
At the moment I am doing ok. I am in a place whereby I realise that sometimes all I can do is control is how I react to how I feel and what actions I take because Parkinson’s is totally rubbish, never mind about all of life’s other challenges, and it can get you down. I don’t take it for granted that I will always feel like this but each day that I do is a bonus.
I totally agree with you that the needs of women with Parkinson’s are overlooked in so very many ways. I was diagnosed in my 40s and could only find very minimal information on the menopause and Parkinson’s; I have also struggled to find any support in terms of accessing breast and cervical screening when acquiring the desired position and remaining still is not possible. I have tried to get support with this but nobody seems to know what to do with me.
I wonder how many women miss out on vital checks, support and treatment in so very many ways because so many things are just assumed to be linked to Parkinson’s when there may be other causes and treatments that may well help. I am thinking of the bladder problems that affect so many women post menopause which can be alleviated with various treatments - I wonder how many women with Parkinson’s are just expected to put up with this with little investigation as it is just assumed to be a consequence of the condition.
I really feel that the specific needs of women with Parkinson’s remain largely ignored and this is something I would love to see addressed but sadly, I don’t think it is deemed to be value for money or headline grabbing enough to be worthy of attention .
Anyway I didn’t mean to moan, it just seems to come naturally .
I would genuinely like to know how you’re doing if you are still following this post and feel up to replying. Jx