Hello starlet I have just received this reply from the Parkinson’s Magazine, make of it what you will - it doesn’t really surprise me.
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Thanks for sharing this post.
I think you are right about fit for the magazine, but you raise some really interesting themes. We will give it some thought as we plan content in the future and will be in touch if we think we could use it for soemthing.
No one can understand but people just feel they have to give a response/attempt to help without really thinking or imagining how their ‘solution’ could be impossible. I know how frustrating it is when you’re really just trying to say how things are, knowing there isn’t any solution. Just a listening ear, with a nod is all that’s wanted
Aileen you are so right. Xx
My husband is in hospital on a dementia ward (awaiting nursing home placement as he has been assessed as no medical capacity as he can’t understand or self manage insulin jabs for diabetes to keep himself alive any more) and non medical staff have made fun of his dyskinesias and uncontrollable drooling. I complained. I have also asked the local offshoot of the Alzheimers society (they deal with all dementias including Parkinsons dementia) to make a case to all hospitals that non medical staff on wards are constantly reminded to manage conversations with dementia patients and avoid reference to going home today or whenever, just because a dementia patient is up, dressed and walking about. Non medical staff are forever building hopes and expectations in patients who cannot go home, and destroying the efforts of the families and medical staff to manage the patient’s understanding and appropriate care. It’s not conversation it’s cruelty
That is so sad, but typical of many ignorant people. The hospital should be doing more to educate them. I’m sure it will be the nhs policy that all staff including non medical need to be mindful of their words and actions. I imagine that it would be a disciplinary offence warranting a warning, but I also know it’s frightening to complain about people who your loved ones are being left with,
This is an outstandingly thoughtful comment with which I completely agree. It is often difficult to convey how we feel with PD when we appear outwardly to be OK and anyway don’t particularly wish to spend time telling other people about our particular disabilities. MIne are freezing and festination (tottering) around the house especially through doorways. These have come about having caught Covid in November resulting in a month in hospital barely able to move at all.
I have put a post on my website on the subject of not being positive all the time and emailed it to my contacts to raise their
awareness of the many hidden, seriously unpleasant aspects of Parkinson’s:
https://www.quercuspublications.co.uk/thoughts_on_parkinson_s_disease.html
Agree Aileen
You are so right Aileen.
My biggest annoyance is extreme fatigue and people constantly tell me to snap out of it
I’m surrounded by my family and most of the time there is a family member that i can talk to at any given time. The problem with me is that my voice becomes incoherent and very hard to understand and i end up repeating my self several times before I get my message across to them but they end up misinterpreting my simple comment and the message is lost and they nod their head like they understand me but they still did not understand me, so i rely on text messaging that helps quite a bit. Especially when i need to go to an appointment or go to the store. One thing that prevents that voice problem is staying active. i have found that instead of laying in bed i get up and move around. This was especially helpful when I had to lead my brother funeral ceremony. Everybody said i did a good job i doubled checked it went very well. So my meds started to wear off just before we went to his grave site. I told my friend that I am not going to his grave site because I started feeling that over fatigued feeling and she told me that I need to do what ever i have to do but you are getting out of my car and going to that grave site and i did and everything went well. i hope this helps
Husband discharged early June straight home. We could not put up with hospital mismanagement of his 3 (PD, dementia, diabetes 1) conditions any more. He had become far worse. They slapped a DOLS on him on 23 /5 just because he irritated the nurse that day by being fully dressed, walking round and asking to go home. Did not know about this until 25/5. Husband due for D2A to nursing home to sort his meds out to bring him home after all the mistreatment/ mismanagement. Strange discharge co-ord stomped in, just said you’re going to xx nursing home tomorrow. Only because I asked did she elaborate. 8 miles from home, two busses to get there, and in the same road we left 30 years ago because house repeatedly vandalised.(I was horrified. Husband would go ballistic) She clarified she was new, hadn’t read husband’s notes and she’d decided he was going to be placed permanently…
Not as per plans… I asked husband if he wanted to go home right then. Yes. We left. All hell broke loose. Everyone shouting about a doll(?) Security were called, and grabbed, held and pulled us to the floor by the main hospital lifts. Pulled apart by security, husband with fresh Chinese burns up his arms where they’d pulled, twisted and pinched to make him let go of me, was manhandled back to ward. I was not allowed back because of the mystery doll. I refused to leave. Police were called. I called a solicitor. She clarified it was a Deprivation of Liberty Safeguard. Told me to ask ward matron for copy. Not allowed on ward. Nurse also guarding me refused to get copy until I pointed out my solicitor could hear her refusal… When I got the copy I really cheered up, so full of errors it was not fit, not correct, and illegal! Not least I was named as interested person responsible for my husband, and I had not been consulted, nor had I been aware of or seen the form until 3 days after it was issued… Upshot was everyone turned jolly nice and husband came home four days later. Still in week 4 of 6 week discharge package. He’s a lot better medically, emotionally and psychologically, but his dementia is escalating faster than any of the authorities now involved can cope with. He reminds me of my mum in her last 3 years of life. She died at 103, Husband not yet 68. I don’t think hell last 4 years. His mind will be gone
your story sounds exactly like mine. I think it is a big mistake to present ourselves at our best. no one sees me as I am most of the time and no one understands the inability to want to do anything. personally, one thing that really bugs me are the people who say things like, “oh, I’m sure you’ll get better soon” or “hope you’ll get over it soon” As if!!!
I was a caregiver for my dear mother who had Alzheimer’s. The same level of ignorance over the disease was prevalent to me then as people thought it was nothing more than memory loss. The wider community needs to be properly educated about all of these medical conditions.
Such a disgrace that you have had a ridiculously distressing experience at the hands of ‘caring’ professionals. I do hope you felt up to making an official complaint, and those responsible have been reprimanded and retrained. It’s awful that PD sufferers fear being in hospital due to poor understanding of the condition. A similar experience happened to a relative who had emphysema and had colostomy. Neither dept were understanding of the other condition and treated him very poorly. Also moved him 13 times before he died in a few weeks of the’ are’. My mother was traumatised in the same hospital by being held up to use a zimmer frame the day before she died, though her leg muscles were obviously wasted away after non use for several years, They wouldn’t listen to her. I find it hard to read of people praising our ‘wonderful nhs’ it hasn’t been my observation.
I have just gone though all your post, and agree with all you say, I have had PD for 14 years sometimes though It is hard to educate Joe public, Now going back a few years can you remember when Cancer was only said in quite words. now people talk openly about it
oh I went to see my GP she said On your notes it says that you have PD !!"it doe’s not look as though you have It !! now don’t ask me but what are we suppose to look like, then the GP said well out of all the GPs in our surgery none of us know much about it? so it’s up to us to educate people into knowing what PD is. I have done bowling Games , Walks , raised ,money but at the same time I would give everyone a Parkinson;s leaflet to read. My friend came to see me and she said I think Micheal has Parkinson;why I ask ? well he keeps shaking when he makes a cup of tea. So according to that if you shake you have PD so I gave her one of the into to PD leaflets. So don’t keep PD to your self go out there and tell the world, Then maybe then we will show all the people what it is like,
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