Rant alert!
Diagnosed in December and have been on Co-careldopa 12.5/50mg three times a day- 8am, 1pm and 5pm. Minor improvement in symptoms, especially leg cramps but otherwise I still feel lacking in stamina, physically exhausted after basic tasks, my voice is lowering, I get breathless on small inclines, have insomnia, nocturnal and early morning micturition. When I mentioned the latter to the Parkinson’s nurse he said, “Many of us need to pee more as we get older.” My first, post diagnosis appointment with the nurse was cancelled at the last minute. When I queried my meds I was promised a telephone call from the neurology doctor. That was five weeks ago. Today I got a letter with a doc appointment in December! The nurse told me that Parkinson’s was like a different jigsaw puzzle for each person, yet when I asked about my medication I was told it was the standard dosage for this stage.
So my question is - 'How am I supposed to feel at this stage? Normal? Able to carry on with my ‘old’ life ? Or do I have to accept that standing cooking is exhausting, looking after grandchildren now a chore, no longer a pleasure, bed at 9.30 and maybe 4 hours sleep the norm. Do I keep phoning the neurology clinic in the hope that one day someone will actually ‘get back to me.’ Is anyone else on this dose with these timings at this stage? I’d like to hear from you.
I am old. I’m 73 but have kept myself fit and active over the years. Right now I’m paying a neuro-physio to teach me PD Warrior exercises and these do make a big difference . I know the NHS is understaffed and overworked but I can’t help feeling abandoned after a diagnosis, a few pills and then left to get on with it. There are a huge number of support options out there but we’re really on our own finding then.
In light of what you’ve shared, your concerns and feelings of abandonment are completely understandable. I’m really sorry that this has been your experience.
Due to Covid-19, there has been a lot of pressure on the NHS which has resulted in a backlog of appointments and probably the reason why your appointment has been scheduled in December. This, of course, isn’t helpful for you and doesn’t negate the impact it has on your overall wellbeing. With that being said, we have an amazing team of advisers via our helpline service who can arrange for a Parkinson’s nurse to contact you so that they can answers any questions that you may have at this stage of your condition.
Do give us a call on 0808 800 0303 when you can and we’d be happy to provide you with more support on this.
H8 Anna.
I am the same age as you but have lived with PD for 19 years. I was diagnosed by a consultant under the NHS but after the initial consultation I never saw him again but the Parkinson’s specialist nurse was fantastic and very knowledgeable. She also respected the fact that I knew my body better than anyone and was quite happy for me to ‘tweak’ my medication to suit me. I saw her twice a year. Unfortunately she retired 5 years ago and when I saw her replacement I knew I wouldn’t be happy. I decided to see a neurologist privately and it was the best decision I could have made. The general ambience of the private hospital so different from the NHS - you get seen on time and the consultant never makes you feel rushed.
I can see him whenever I want and his secretary knows who I am…He also makes it clear that I can phone him any time. I won’t say what his fee is publicly but would be p!eased to give you his name and fees privately. I think its money well spent. However going private isn’t a magical cure- my Parkinson’s is gradually getting worse but on good days I can walk two miles and cycle ten. Keeping active and positive is the key to living with this unwelcome visitor.
Janey
Hi janeyS,
Thank so much for the reply and, yes, I have indeed been considering seeing someone privately. I was referred by my GP last August and it was taking so long to get a NHS appointment that I made one with a neurology consultant at a local private hospital. As it happened the NHS appt came through the same week and the private consultant basically confirmed diagnosis and answered any questions which I’d failed to ask in the shock of the NHS diagnosis two days earlier .I decided at that point, and he advised, to go with the NHS.
I can understand from what you are saying that going privately would be money well spent, especially for the peace of mind and reduction of the stress. If this were a one-off surgery, I wouldn’t hesitate but this is going to go on for years. (And, by the way, it is nothing short of inspiring to hear what you are doing after 19 years of PD.) I presume you pay for the medication as well as the consultation fee?
I want to end this reply by acknowledging how fortunate we are to be able to consider going private. It’s not an option open to everyone.
Anna2
Hi again Anna.
I don’t pay for my medication - my consultant writes to my GP after each consultation with a detailed report and asking for the medication to be added to my repeat prescription.
As you say, we are very fortunate to be in a position to pay for private medical care and I do appreciate that others have no choice but to go with the NHS. I also pay for weekly reflexology sessions and also regularly see a physiotherapist who specialises in neurological movement disorders and by coincidence studied under my consultant.These wonderful, clever people make up ‘Team Janey’ and I am so grateful to them.
Hello
Sounds like you haven’t had the best of services regardless of Covid. I note others have said they’ve chosen to go privately- obviously their choice and if you’re able to fantastic afterall eases the nhs too. For those not in the position to seek private help I would say that you do have some choice within the nhs. We researched hospitals who are bench marked as hospitals of excellence in the treatment of Parkinson’s. Once found you are able to research the consultants working at the said hospitals. Return to your GP and request they refer you to whom you have chosen.
Whilst we live in Sussex we choose to be seen at a London hospital; 100% worth the effort involved in getting there. Best Wishes Jane
I am recently diagnosed. Took me two and a half years to get diagnosis. Had ECG, Blood tests, MRI Scan, Cat, Scan etc etc. Like you I have has two and a half years of rotten nights sleep. Recently averaging five hours a night.
My savior is a local private GP who is willing to keep me supplied with Zopiclone (3.75mg) The man who invented Zopiclone should get a knighthood. He/She has rescued me from suicide more than once.
I was a pilot for over thirty years and could sleep any place ane time until PD kicked in, sod it. I have long periods when I lose the ability to sleep.
I’ve tried any therapy known to man. Budist chanting, warm baths, self hypnosis, Scotch Whisky, hot mistresses, etc. You name it I’ve done it. The only thing that works for me is Zopiclone. Try it.
Hi Aerobatic,
Apart from the hot mistresses, we have been on a similar track, including in length of time and variety of scans, blood tests, ECG etc, eventually getting a diagnosis from an observant physio. I have contacted my sympathetic GP and am in possession of a box of Zopiclone, one of which will be swallowed tonight. Watch this space.
Loving the exchange of ideas here! Awaiting with bated breath to hear the Zopiclone outcome.
True but you can private message people on the forum. It’s not easy to find though. Click your own icon top right. Then click the little envelope twice and you are into the private message area and can send another user a message.
Hi Pcyc,
Thanks for info about private messaging.
I would love to be the facilitator of a satisfying long deep breath out for you by reporting a Zopiclone-induced restful, restorative and reinvigorating night’s sleep but, you know, it was OK. Bed at 10pm, up for a pee 1.30, back to sleep till 4.30, another pee, then restless dozing till 7a.m so, yes, better than usual. I don’t want to take a sleeping pill every night and become addicted. I probably need to contact Gp re frequency and urgency of overnight micturition, as I worry about getting into a really deep sleep and wetting the bed (sorry, too much information). This disease sucks.
Thanks for the update! Thankfully sleeping isn’t one of my issues although I can’t compete with my 19 year old son who can quite happily stay in bed until 3pm.
I don’t know if this is allowed but I have seriously, over the last year, thought about taking the soldiers way out and taking my own life. If I was on my own I probably would have done it by now but I have responsibilties in the shape of a dependant wife, son and daughter, and five grandsons. The fall out from this action would be awful for them, I think.
This thought must have occurred to numerous people with PD. Any thoughts out there?
Hello Aerobatix
It was so sad to read your post but I am glad you came to the forum. I don’t pretend to be an expert when people are feeling as you do, much less feeling well placed to say anything that will probably make a difference to you. Only you know how you truly feel and I respect that but as you haven’t carried out your thoughts yet and are still able to think of others if you did and that you have come to the forum suggests to me that maybe all is not lost and with help and support you can begin to understand there may be other options open to you. I know you probably don’t believe that when you are in such a dark place and maybe you don’t want to hear it because it contradicts what you are feeling. I can understand that but don’t you owe it to your family and yourself to at least let someone help you find out? Please speak to your GP or call the helpline or ring the Samaritans you can speak to any or all in confidence but please do contact someone, even a trusted friend or relative if you have one. You can’t do this alone feeling as you do. You bravely reached out to the forum and I urge you to be brave again and reach out to someone who can help. You are not the first person to feel like this and you won’t be the last but it doesn’t have to be this way if you let someone in to help.
Tot
Hello again Aerobatix,
I think it was very brave of you to openly air these thoughts and yes, the thought of taking my own life has also occurred to me, especially when I think ahead to the life of complete dependency which awaits us. Like you, I have grandchildren who would be traumatised and I wouldn’t contemplate self-euthanasia at this early stage of the condition but I’ve googled Dignitas, had blackly humorous conversations with friends of similar vintage, one of whom has promised to find out from her consultant oncologist daughter the ‘best’ way to cleanly and efficiently dispatch oneself.
I tell my husband that I dread the thought of having my nappies changed and being hoisted in and out of bed. “Och, something else will get you first” is his comforting reply
So, black humour (and mild anti-depressants ?) save the day, week, year, but at some point over the next who knows how many years I will have a serious conversation with my adult children.
I’m thinking of you and hope you’re ok.
Anna 2
An excellent and honest post Anna2 and it is brave of anyone who speaks up on the subject of suicide in whatever way because it remains something of a taboo subject. I actually posted a poem on this subject in May. It was my friend’s uncle, he does not have PD, but has his own demons. It is not an easy read and you don’t have to read it but if you would like to this is the link
I myself have not had any such thoughts but i can imagine it is a lonely place. I hope both you and Aerobatix know you are not alone on the forum. We may not be expert nor have experience of such black thoughts, but I am sure i am not alone in understanding the despair and utter hopelessness Parkinson’s may, can and does inflict as it progresses on some.
Tot
Hello Tot,
Of course I read your poem and found it a moving expression of the point of view of the loving but helpless looker-on. You are an articulate and valuable contributor to this forum.
