In her recent post Jac63 wrote ‘I feel late middle aged women with PD are a bit invisible’ and this got me thinking. I would fall into this group but had never thought of myself as being invisible on the basis of my age. Where I do feel ‘invisible’ or at least rarely noticed is in the ‘living alone’ group where all too often there is an automatic assumption you have a carer, most literature and documentation are worded as if everyone has a spouse or partner, attending a medical appointment on your own is often viewed with at best, surprise and there are always two strategically placed chairs even when my medical team would know that after 13 years I have always attended my appointments on my own. There are many different challenges that a person with Parkinson’s who lives alone faces and the bottom line is you have to get on with it because there is no-one to pick up the slack; basically if I didn’t do x,y and z it wouldn’t get done.
I live alone by choice, others may be widowed, divorced or separated, some will not have family support and so on but all live with the challenges Parkinson’s brings just on our own. We are constantly told and indeed I have so written in some of my replies, that Parkinson’s is a very individual condition and it is; but maybe there is some mileage in identifying some of the common situations and looking more closely at the sorts of issues the different categories of people with Parkinson’s face which could possibly influence the way some information, maybe even services are potentially delivered.
I am not particularly looking for any answers here, it is more in the way of a theoretical discussion. I am just interested in the question 'As someone living with Parkinson’s, do you identify a like minded group or category of people within the general Parkinson’s population? If you do, do you feel the particular challenges you face are adequately addressed - and I’m thinking generally here not just by Parkinson’s UK, although it could throw up some interesting points of view that they should perhaps take on board. The groups or categories are informal ones that you may feel you fit into, not the ones that are recognised such as YOPD,
I am not sure how much interest this will generate, but I would be interested in any comments you may wish to make.
I’ve got a mixed reaction to this one. For starters, I’m 76, is this late middle age or late late middle age, or possibly the beginning of … I understand the situation on a visit to the hospital, I am on my own and have been asked Oh dear, is your carer still looking for somewhere to park? At 13 years after diagnosis, I have sometimes felt that if I had a partner/carer they would be given advice/knowledge about my condition that the doctor/nurse feels they cannot give to me.
I try to go to anything on offer ie exercise groups, social meetings, etc. At smaller social meetings I am often the only female patient. I seem to be regarded as an outsider by the patient group, and the women want and need the opportunity to compare notes and let off a bit of steam and do not want me sitting with them.
Yes it is not something that’s black and white and I’m not sure if others will see themselves as being invisible by dint of something peculiar to them. I have long felt that living alone is rarely addressed in any meaningful way, not because I consider myself a special case but because most things are portrayed in a stereotypical way, into which I don’t fit nor, I suspect do others. Jac63 didn’t specify what she meant by late middle aged women and it could be age related or because she is female or both taken together and I can see her view up to a point. - although the world is changing in very many ways there is still all to often a sense that women are less important than men; maybe this is true if living with Parkinson’s too. However I am guessing here and have no wish to put words in her mouth. It was interesting to read that you can be made to feel you are an outsider and that raises a few questions in my mind, is this perception yours or is it something tangible they do or say? Coming back to the main theme of this thread, I wonder how many of us have felt like an outsider and what did we do about it. This reminded me that not long after I was diagnosed I went along to a local support group. Everyone was very friendly and I was made welcome but despite this, I didn’t feel I belonged - of course I knew that ‘Parkinson’s talk’ would dominate the meetings but for me it was too much, I saw Parkinson’s as part of my life not my life per se. I left the group, I’ve not been back and my participation on the forum is the only directly Parkinson’s related activity I have in my life. This may in fact give rise to another category to go alongside my living alone, namely ‘My Parkinson’s affects my life but it’s not my life - others have trouble accepting this’ which takes up a lot of time and energy which could be put to better use.
Thank you for your reply Mosie. As you can see it has set me off on another line of thought. i have no idea where this will go or how it may end up, maybe this will be the end but it’s nice just to have something of an intellectual albeit abstract discussion as something a bit different on the forum.
Hi Tot n Mosie I think you have both given all the members something to think about , PD takes no prisons but at least you are in control. Maybe you could get in touch with the editor of the PD magazine. and ask if you can have a small piece on a page then maybe write a diary. Then we could learn more.
An interesting idea mary1947 but diary writing is not my forte, i find it a bit boring, besides I think the pressure of maybe writing a regular piece would be too much - I have to be careful of stress levels these days. I sometimes think my brain works in an odd way and not because of the Parkinson’s - I remember at work once there was a conversation about mother of pearl and I suddenly wondered why it was called mother of pearl not father of pearl, my colleagues did one of their ‘here we go again another pointless question’ expressions which I was well used to. In this case as I said a remark by Jac63 set me thinking and every now and again I like to throw something out there just to see if it resonates with anyone. This could be a bit abstract for some but I think a valid point was made about invisibility in Parkinson’s. Quite a lot of posts on the forum ask if x y and z is normal, or that they don’t see themselves as fitting the (stereotypical??) picture of a person with Parkinson’s. We very glibly say it’s an individual condition, and I wouldn’t disagree with that in principle; but the comment made by Jac63 just made me wonder if we should maybe look at things a bit differently. Maybe there is some common ground in what makes us feel we don’t fit, or why we feel ignored or invisible to policy makers or within information documents for example which tend to walk the safe middle ground - the most common one being everyone has a spouse, partner, supportive family etc. If it’s made you think then I consider it a point worth raising and I thank you for your comment. A diary writer I may not be but as an occasional poster of something a bit different which maybe makes someone think a little differently all I need is for something to set me off as here.
Hi TOT I think you for your reply From t reading you comment I feel as though you make a very valid point that is we are not all the same. We are individuals. I was diagnosed in 2010. My condition is not too bad I do have friends that are a lot worse than I am when you mention PD to Joe Public all they seem to think is that you shake a lot we need to show them that’s not all it is. I have been writing my life story only because my grandson ask once grandma what did you do when you were a little girl. Must admit it has been about 8 years since starting it and I have only gotten to when I first married. I think do your own thing as long as you keep going love your ideas when you hear see something it sets your mind off I will often say to hubby oh look at ? Don’t it just makes you think. Try and l keep posting you have made my day.
What a lovely post Mary1947, thank you so much. Good luck with your life story. For some time now I have been gradually moving my verses and favourite photos into photobooks to make space on my tablet and where I find I read them more. This has evolved into doing a few books for friends. The latest although not my life story was prompted when looking for a gift for the son of a very good friend who will be off to university this autumn. I didn’t want the usual gifts they didn’t seem to me to be really personal - they tended to just add a name - and then it occurred to me that I met Gill years before she became a mum and that led to a photobook gift for James. She will be giving it to him once he knows which university he is going to go to. I hope your life story gives you as much pleasure as my photobooks give me.
Tot it is a wonderful present, it will give your friends son lot of pleaseure but what I find is that I enjoy just doing things like that, but it just goes to show Tot your not has invisible as you think.
Stay safe have a nice day mary
To explain more what I mean by late middle aged women with PD and invisibility: when I was first diagnosed 7 months ago I looked for other women like me on social media and on forums and could see none. There are women on Twitter with PD but they seem to be nearly all YOPD. I was 58 when diagnosed and the voice of women over 50 with PD was -and is- very quiet. The same applies to celebrities who are open about living with PD.
From my brief experience it seems to me that women’s specific issues with this disease are under represented and discussed.
To take one example I have also been recently diagnosed with breast cancer for which I’m receiving treatment. I’ve been trying to find information about breast cancer hormone therapy and PD but with no success. There must be other women with both diseases (especially as a particular gene can predispose you to both) but I feel like I’m the only one.
I suspect that women may take longer to get diagnosed too. I have no evidence for this but my own personal experience was telling a GP that I was either trembling or stiff and could it be PD and being diagnosed with anxiety without even a face to face consultation or video call! I wonder whether this would have happened as easily had I been a man.
The point you raise about living alone is I think a female issue too as more women than men live alone and have PD. And I suspect more women than men are carers for someone with PD.
The paragraph that really resonated with me in your post above is your comment about how you don’t want PD to be your whole life. Yes! That is exactly how I feel. I am a woman with PD and I’m being treated for cancer but I’m the same person as I was before. And I’m also a wife, mother,sister, friend and a solicitor. All of which are important to me.
Let me know if you’d like to chat more.