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It won't let me :-( access denied - first time using this forum.
Welcome to the forum. I'm Joanne, one of the Digital team here at Parkinson's UK. I'm around to help with any questions about using the forum.
There's some more information here about using the forum, and please do let me know if you need a hand.
Our mum was diagnosed 20 months ago with moderate PD. We had been urging her to see someone about her deteriorating symptons for about 3 years - she believes she only had symptons for about a year.
There was a whole lot of confusion on her prescription betwen the consultant, the PD Nurse and the local GP - it took a further appointment to the consultant and a complaint as this was over a period of 8 months to finally settle down and for everyone to understand what levels mum should have been on for 4 months previous.
In October 2016, I contact the PD Nurse as mum was getting upset as should could no longer write, my mum had the most beautiful old fashioned writing - writing of old black and white movies! This was making her very upset along with occasions where should would give up on eating a meal because she couldn't negotiate it to her mouth. Not sure about anyones else's local support but here, we have to leave a message with the PD Nurse and they ring you back within 5 days in which I wouldn't ring them on a whim but mum was feeling pretty low which magnifies the depression she has already lived with for years. Well, I missed the call and they contacted mum, the conversation between the 2 of them was the PD asking mum what was goingon, mum replying with 'oh nothing to worry about, my daughters just think I'm going to pop my clogs'. They both finished off the conversation with a good ol laugh. I didn't hear from the PD Nurse and was left feeling very deflated with how this had played out anf frustrated with mum.
5-6 months ago, mums symptons seem to be getting worse at quite a rate and the consultant had put mum's appointment back by 2 months. I contacted the PD Nurse and also made an appointment with the local GP as I felt mum couldn't wait what would now be a total of 8 months to see the consultant and thinking all parties should be aware of mums current health status. We managed to get into see the PD nurse who was dismissive of the situration. In short, we were advised there was no increase available on her current medication, there were no holistic suggestions, operations, etc and that the medication was not meant to treat her tremors. I reminded the nurse that we were advised by the consultant that the medication was supposed to help alleviate some of the severity of the tremors. Only at this point, information on Dopamine Agonists was offered alongside existing medication with side affects. The one offered (sorry I can't remember the name) came with compulsive side affects, in which we are currently deliberating as to whether mum wants to go down this route.
We saw the local GP a few days later who happened to be a locum on the day and didn't want to review/amend the current medication as he had no knowledge of PD. When booking the appointment, I specifically said it was for this reason.
Unfortunately, my mum is not a self help kind of character and throughout her life, has always heavily relied on medication to fix things. She is also stubborn (not determined as suggested by the PD nurse), mum would rather end up taking a tumble, missing meal(s) or exagegerating her symptons by not taking her medication if she felt, even slightly, that someone was trying to tell her what to do (this is a life long characteristic). We have had the same battle with her depression tablets 20 years ago, her diabetes tablets/diet 10 years ago and now with PD (oh and she has osteo arthritis). Mum refuses to join any kind of groups, feeling this is too far out of her comfort zone, refuses to excercise as she says she can't, both of which I know could help to reduce symptoms.
We feel helpless, it's as if you are diagnosed, prescribed then just put on a 6 month checkup list. I know the above sounds very negative and actually we trying every which was to empower mum. However, we are caught between mum and the PD Teams. Having spent the last 6 years bringing mums house/garden up to date with major rework, the most recent project to change their bathroom (for point of reference, my sister and I are in our 40's, hold down our own full time jobs, homes, young children but still turn our hand to any kind of major rework in order to save our parents money).
We are not complaining about taking care of our parents, in fact we were born with an overwhelming sense of duty to look after them but surely there is some help out there or is this it? I'm wondering if we are missing a trick, if feels like there is no-one jumping in front of us and saying there are these services available now your parent has PD.
Which is why I am turning to you lovely lot for advice. Also, to note, I am a great advocate for the NHS, we just need some direction.
Many thanks and I look forward to listening x
Sorry to hear that you are going trough a bad time, my wife suffers with fatigue movement and balance issues and other things. She is taking sinemet 5 x a day and anti ds . We all love the NHS but like you we don't seam to get anywhere as if the PD nurses just go through the motions. The consultant don't seam to help much either, its so frustrating.On the help you need have a look and see what benefits your Mum can get you could get carers allowance join the carers trust or carers uk . Get in touch with your council they will also help you and your Mum, write key words ( like benefits ) in the search at the top rhs of this page and lots of info will come up.
Thank you so much :-)