Hey, I knew a fair bit of that but I learnt a lot, too, so that was very informative - cheers for that, Paul. I recognise your tip about keeping hydration going - she does that one as well!
Yes, it’s really tough and you are right to ‘vent’ on sites like this which are wonderful. People are so kind and empathetic. My husband was in the same position as your partner for at least four years getting worse and worse and then, lo and behold, one doctor we saw realised that, although related to Parkinsons, B actually has PSP (Progressive Supra-Nuclear Palsy - see the PSPA website for more information). Whilst it’s done nothing having this diagnosis, I at least understand more now what B is going through and have hooks on which to hang the things that are happening to him - just a very small lifeline. There is no treatment and no cure for PSP sadly, although lots of on-going research but there are fora like this one, to communicate with others and learn as much as possible. I have found that knowledge (however small) helps me to understand my husband’s condition better. It might be worth asking about PSP when you see the consultant as, clearly, the medication for PD has done nothing for your loved one and this was the sure sign for B that it was something different from PD. Yes, I know no-one has ever heard of it and, apparently, there are only about 4,000 diagnosed cases in the UK but people who know about PSP suggest that there are more than double that in undiagnosed cases. And do keep fighting - this is what we all seem to have to do, given that the NHS is so strapped for cash these days and immediate, recognisable medical situations always seem to take priority. Keep brave and acknowledge that we can only all do our best, whether it feels good enough or not! J
Hi, Thanks for getting in touch. That’s useful to know. I could scream and shout trying to get an appointment (as soon as, preferably) and still I don’t think it could get anywhere with some of these gits who seem to have no empathy or sympathy with your plight. From what I can see, her Parkinson’s is deteriorating and deteriorating rapidly, starting to impact and impinge in a massive way. It’s not meant to decline quickly, but that doesn’t mean it can’t as it’s different for everybody, of course. But I’m not the clinician and can’t prescribe meds, insist on therapies etc. so until any of this happens, and there’s a direction on whether this is all Parkinson’s or something else, what’s there to do apart from worry and feel tortured every blighted second? (That’s how I feel deep down, regardless of how I try to calm myself and focus on doing what’s right etc…) Total nightmare.
Hi. I live in Cornwall. My husband has PD but I suffer just as much if not more. Appointments are like hens teeth. Feel that we are just a number & it’s a “take one more or drop back less” without even seeing him! Really? How can you medicate without seeing someone? Baffles me & I feel frustrated & angry. We just have to get on with it & that ain’t easy. Rant over but I bet I’m not the only one that feels this way.
Hi, I can only empathise and sympathise. But I feel your pain and it’s what we’re enduring, too. And medicating like that for someone with an incurable condition…words fail me.
Hi I too have spent the last 3 months trying to get a review. Only thing they could offer was a telephone call in 3 weeks with the pd.nurse. I have on average 2 hours sleep a night sometimes zero sleep. My meds wear off and for 8 hours a day I m plunged into despair and suicidal thoughts. All in addition to the rigidity etc. I have had no choice but to increase meds myself with my go supplying the extra after listening to me. empathy compasion? I see none of it from the pd specialists. Hope you are luckier than me.
This does sound like a very difficult situation to be in and we’re sorry to hear you are going through this.
If you are in need of urgent support you can contact your out of hours GP services, NHS emergency services on 111 and the Samaritans on 116 123.
You can find information and support for sleep problems on our website here. Please also feel free to call our helpline advisers on 0808 800 0303. Normal service will return on Wednesday 2nd January.
We hope this helps.
You deserve all the respect in the world, I was caring for my dad till about 9 months ago and I felt I couldn’t do no more. I was the only care giver to my dad, there was another sister but she decided it’s not for her. I got support from a local wellbeing service who sent a lady round to give practical and financial advice ie benefits. This give me a grant each year to get respite I think it was a budget grant of £250 from the local county council which I could use for a break or get home help. You are an amazing person by the sound of it, my dad is in a nursing home now where I have the energy back but it’s took a long period of 8 months to get it there.
You too are an amazing human being as what you have achieved is incaluable .
You stayed the distance my friend and probably don’t think about getting any respect but you have mine.
Isn’t it always the way that the ones that do jack.
End up getting the pat’s on the back.
Such is life eh?
Huge respect and make the most of your regained energy .
You most certainly deserve it.
Forums like these give people a connection with others in let’s call It the same boat. In life we never realise what is the next chapter, i have had my episodes in life in hospital stays. Something takes over but if you can give someone who needs advice or just a lift it’s got to be worth it.
So sorry to hear of your plight. I can only imagine what that minimal sleep does to compound the issues for you. I think I’m on the verge of an accident with what meagre amount I get regularly, but it doesn’t compare to that. And offering a telephone appointment - how can a diagnosis for anything be made without a face-to-face assessment - after struggling for along must almost feel like rubbing salt in the wound.
I don’t want to sound presumptuous or anything but it must have drained you of all energy and broken your heart and spirit just to get to that point of, well, no-return, if I can say, with you Dad. I just seem to learn new ways all the time of how debilitating this darn thing can be, for sufferers and carers. Horrible.
Yeah, when they’re in a place you’ve been, feeling lost and down that helps. And thank you for doing that with me.
Hi anyone my father is suffering with pd he does not sleep at night me and especially my mother are sleep deprived he is on medication to try and help him sleep but to no avil has anybody any ideas
A warm welcome to the forum.
Unfortunately, sleep and night problems are common problems in Parkinson’s. They can affect people at any stage of the condition which explains why your dad has been experiencing this problem. However, there are treatments and medication available to him that can help with this.
We have information on this including tips for sleeping better with Parkinson’s and tips for carers too on our website here - https://www.parkinsons.org.uk/information-and-support/sleep.
If you need additional support on this, please feel free to give our confidential helpline a call on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email [email protected].
I hope this helps.
Forum Community Manager
I find breathing exercises (The Buteyko Method ) helps. I get up and use a spreadsheet to record my performance - all the while using a fan to cool myself https://www.google.com/search?q=The+Buteyko+Method&rlz=1C1DSGP_enGB648GB649&oq=The+Buteyko+Method&aqs=chrome..69i57j69i64&sourceid=chrome&ie=UTF-8
Crikey, does anyone else on here feel really, really tired the more levodopa they take during the day? My other half’s terrible for it. From the early evening she can barely keep her eyes open, but is just really drowsy and groggy, eyes shut and lethargic without actually falling asleep. It’s causing some squabbles, bad i know but it just limits what we can do as she’s really drowsy without sleeping. And it gets worse when there’s a virus or infection of course and that can make the Parky worse.
But is this normal and do any of you guys have this or something similar?
Yes I take levodopa and I get drowsy. I was warned by a nurse that when I get drowsy I should not ‘fight it’. Therefore I take a nap ASAP.
everyone seems to feel for the Parkinson’s sufferer i feel so selfish my husband s newly diagnosed and all i can can think is my life is over wished i could be more positive
Firstly you are most definitely not selfish.
You are just as much s victim of this horrible condition.
However the helpline is there for you as well as your husband.
You have already made a good start by being open on this forum and I’m sure many people in your position Will be in touch.
Nothing is over until it’s over
And I assure you it’s not all doom and gloom .
With good advice you will learn to cope so talk to your husband’s pd nurse and your own GP to get the help that YOU need .
And very soon you will be able to play with the hand that fate has dealt you both.
NEVER feel guilty about any thoughts or actions you take and live your Life the way you can feel comfortable
That’s not selfish it’s just what we all deserve.
I wish you both a content conclusion