Hello Tot … You are well organised.
I have had a VERY bad day today. During my away bowls match this afternoon
I fell over 6 times. Our skipper came over & made me stop playing. The skip drove me home in his car after the match & someone else is driving my car home later.
Oh crappy, crap, crap, crap !!!
I am at home now & still feel terrible. I can’t really walk, I suppose I better go to bed.
Ho hum.
Best wishes
Steve2
I am so sorry to hear about the bowls match Steve2. But remember it is another day today, and things will be different. I know how embarrassing these things are, but people do not always see it the way you think. So (I know it’s easy to say) - try to dust yourself down, and prepare for the next match, when I am sure things will be better.
Thanks Tamsin.
Best wishes
Steve2
Morning all … Well I suppose we all have bad days & worse days. But today has been a good day for me. After my many “falls” on Saturday during Indoor Bowls I decided to stop taking the Clonazepam & prescribed Melatonin that help me sleep. Yes they help me sleep but I do feel very sleepy / zonked for most of the next day.
After stopping the pills I had a bad night’s sleep on Saturday night, woke about 2.30am but last night I had a good night’s sleep. I did have a bad dream but not the worst I’ve had. I do feel way less tired today & my eyes feel normal rather than painful. Also been on my first short walk for quite some time which I managed easily.
I have health insurance through Benenden that costs me £15.85p a month & they have just authorized a “sleep study” for me today. The wait list on the NHS is 20 weeks plus.
I get my initial consultation with a consultant at the Nuffield Hospital a week on Thursday. I can spend up to £2,500 with this temporary Bupa cover.
Mixed Indoor Bowls match tomorrow. Let’s get back on that horse & hope I don’t fall over again.
Best wishes
Steve2
I don’t think you will fall over tomorrow Steve2! It’s probably a matter of meds timing. I find I have to get it absolutely right, down to the last minute literally. If I miss the mark, everything can go horribly wrong. The sleep study sounds really interesting. I wish I could get my sleep sorted out, it’s been awful ever since I was diagnosed with Parkinson’s-related anxiety - and I have been on the waiting list for some time for ‘talking therapy’, which is the thing I feel will help me most. Amazingly, that has just come up, and I am due to start after Easter. I feel it is easier for me than various meds, which make me feel terrible in the main. Apart from Clonazepam btw. I am sure you know, but be careful of just stopping that, especially if you’ve been on it for some time. It needs tapering. Good luck with the match!
Yesterday was another very bad day for yours truly. So I arrived at Eastbourne hospital. Urology was on the 3rd floor. I was tired after poor sleep
I took with me all my computer stuff and a very large bottle of water in another bag. I was early so I asked for directions and was told purple zone on the third floor. So I walked and walked. You would be surprised how many people asked if I was ok. I said I was fine, but I wasn’t really. The ground floor is actually the second floor. I finally came to the lifts, but two of the three lifts were out of order. The third lift said “Theatre staff only”. So it had to be the stairs. There weren’t many steps but 1/3 of the way up I came to a stand-still and could not move. Fortunately a lady came to my rescue and carried my two bags to the Urology waiting room and I was able to follow her.
I slumped down in a chair.
It was now 2.55pm, my appointment was at 3.10pm. I was bursting for a pee as I was told to arrive with a full bladder. At 3.30pm. I was called into Room 1 where there was a small fat Asian woman doctor and a tall fat English woman helper. Lots of camera stuff & syringes etc by the bench.
I was told to sit on the bench and remove my shorts and pants. It was clear that they were going to do the cystoscopy now, I thought I was booked for a cystography but I wasn’t. I said I had a full bladder was that ok. She said I could go and pee if I wanted. So I didn’t need a full bladder then. No I didn’t. So I pee’d. So I’m lying on the bench, shorts & pants around my ankles. The tall fat English woman was getting out a paper cover to go over me. I told her that wasn’t necessary, I mean what is the point?.
So she put it away.
The painkiller in the syringe was inserted you know where & was not pleasant. Then a minute or two later the huge camera was inserted, again quite uncomfortable. Looked around my bladder and I saw it on the screen. No cancer, no polyps, no stones, all normal. I dressed & she had filled my bladder with water. I then had a very, very, very painful pee.
Then I went to the waiting room as a wheelchair had been ordered, but they were busy. Had 3 more pees which were also incredibly painful. We are talking 8/10 or 9/10 on the pain scale. Peeing razor blades comes to mind. I decided I couldn’t wait for the wheelchair so I started walking. The stairs were easier going down hill. I’ve had about 20 pees since I got home, the last one only hardly worth the effort but it effing hurt. Certainly not getting easier. I doubt I was at the hospital much over an hour.
While I was there they fixed an appointment at another hospital for today. I left at 6am to go to Hastings Conquest hospital. Going to have some dye put into my bladder through my John Thomas & then getting it X ray’d. They said I was the first patient, prep at 8.15am, appointment at 9am, should leave at 9.30am & bowls at 11am to 1pm. I don’t think I will be up for bowls. Well that’s my bad day news. I hope you didn’t find it boring to read.*
I have been given a measuring jug & will have to make a note on a form of how much I drink & how much I pee 3 days before my next appointment,* *morning & night. That will be fun [not].
This is all a Parkinson’s related examination from way back.
Best wishes
Steve2
Sorry to see you had such a difficult time at your latest appt. It will have been worth it if gives you some much needed answers, but I know you won’t be holding your breath on that. I hope your week has improved a bit.
Tot
Good evening Tot … The pain I had peeing after Tuesday’s cystoscopy has gone.
Wednesday’s 9am procedure at the Conquest hospital in Hastings was way more pleasant. As it turned out the dye was put into my body through a vein [cannula]. It made my body feel hot and my face flushed and my bladder weird, but not at all unpleasant. This was to do a scan of my bladder and kidneys. Lying on the bench that went through the scanner was a challenge. For the first scan I lay on my back and the second scan on my front. What a struggle that was. I was asked if I could lie on my front and I said we will find out won’t we. It is strange that something so easy to do in times gone by is now so difficult.
It was only maybe an 80 yard walk to Radiology and no stairs to be climbed. Excellent.
You’d think hospitals would let patients know if the lifts are out of order. Eastbourne hospital take note. Also maybe a good idea to let patients know how long a walk they have to get to Urology etc … Also when you are told you need a full bladder but then you don’t you should be advised. Rant over.
I’m going to give my Eastbourne hospital experience a 1/10 score and Conquest hospital a 10/10 score.
Also why were both procedures not done at the Conquest hospital? For the cystoscopy you only needed a room and a computer screen. The procedure is over in less than ten minutes.
Best wishes
Steve2
Who knows how they work steve2 but glad you had a better experience. As it happens I too had the dye treatment about 10 days ago when I went for a CT scan - I was just grateful I managed to keep still for the duration of the scan 
Evening Tot … I think my lungs are the only thing I’ve never had any trouble with, I know I shouldn’t have given up smoking when I was 15. Then I could have had a full set.
Best wishes
Steve2
I hope your sense of humour doesn’t desert you steve2 - humour especially black humour can get you through a multitude of trials and tribulations although I accept it’s not everyone’s cup of tea.
Tot
Evening Tot … I think humour is my way of dealing with things. Having a cystoscopy isn’t something 99% of men might own up to, bit like having a prostate exam. Something we men just don’t talk about. But it is quite funny. Like that female nurse wanting to cover my body with paper for modesty reasons on Tuesday. What was the point ?
Best wishes
Steve2
Good evening everyone. 16 days ago I had a CT Abdomen and pelvis with contrast scan and a CT Urinary tract with contrast scan at the Conquest Hospital in Hastings.
It was a strange but painless experience. I was told that if nothing was found I could expect results in 1 to 2 weeks. Today I got an email from the “patients know best” where
I get my test results.
The email I got today said that …
“The report will be available on 05 July 2025 at 08:16”.
That is a months time, that strikes me as a long wait if nothing is wrong.
Should I be worried …
You would have thought that if the delay was down to being busy they might have said something like … We are very busy at the moment & reports are taking a long time to produce . Sorry blah, blah, blah.
Best wishes
Steve2
Instead of wondering and worrying steve2, why not contact them either by phone or by replying to their email and ask them. You would be quite within your rights to say if nothing was wrong you were told you would hear within 1-2 weeks and since you are being kept waiting a month what does this mean because you are beginning to worry? There must be a reason for such a precise date and time (most unusual to have a time like that.) In your shoes that’s what I would do- given what you were told what else do they expect you to think and did it not occur to them that you would worry when, as you say, they may just be busy.
Tot
Evening Tot … Yes, I will do as you suggest, thanks.
Anyway as usual I am not sleeping well & Friday I woke up feeling no different.
I stayed in bed, sitting up, having a cup of tea, looking at the laptop etc. 12.30pm I got out of bed & put my bowls gear on & got in the car. I backed out of my car park space & suddenly realised I felt quite light headed. Most odd. Drove the 10 minutes to my bowls club, arrived and sat down and chatted. I then walked to my bowls locker to put on my bowls shoes, I did not feel normal, my left leg from the knee down was completely numb, I do get numbness in my left leg but often just my big toe and the side of my foot & had my Parkinson’s poor balance / no coordination sensation. So clearly I could not play bowls as I would almost certainly fall over.
So I told the lady organising the role up bowls game that I could not play and was going home.
Arriving home I looked up 111 online and answered their questions, at the end it said phone for an ambulance. I did not want to go to hospital as my symptoms are most probably an “existing condition” and nothing will happen.
I am of course wondering whether these worse symptoms are because I no longer take my Parkinson’s medication.
I digress … so I phoned 999 and told them 111 online had said I should phone 999 but I felt quite well and did not wish to go to hospital. The lady asked me the usual questions and insisted she send an ambulance. So about 45 minutes later an ambulance arrived with two charming young ladies and they did the usual basic tests. All ok.
They wanted me to go to the hospital but I declined.
I have a league bowls match on Monday morning, I hope I can play as my team is top of the league.
Life is so complicated isn’t it.
Best wishes
Steve2
I have just received an email from the consultant neurologist I saw about 6 weeks ago.
Dear Steve2
Thank you for your email of 30/05/2025.
I had still not heard back from the Professor of Nuclear Medicine, but I have had an email today to say that she has looked at the scan and she believes that the scan is not definitely abnormal, and that the semi-quantitative analysis was within normal limits, except for the P:C ratio on the right, which she felt was borderline.
I think it would be a good idea if I reviewed you in person at my clinic, now that you are completely off the Sinemet and Rasagiline in order to see if there is any clinical evidence of parkinsonism and generally to review your case in the light of my review of the investigations.
Yours sincerely,
Dr xxxxxx
Consultant Neurologist & Sleep Physician
Can anyone tell me what the email means, all these double negatives are confusing me lol.
Best wishes
Steve2
Hi Steve2,
Think they are saying your brain looks normal from DAT scan. How are you feeling since coming off the medication?
Good morning JD2024. The second opinion contained in the email said “the datscan is not definitely abnormal, and that the semi-quantitative analysis was within normal limits, except for the P:C ratio on the right, which she felt was borderline”.
What I get from that is that the datscan is positive for Parkinson’s / Parkinsonism but only very marginally so.
“How are you feeling since coming off the medication?” What a good question.
Answer … Symptoms have been more or less the same. I continue to sleep very poorly, I still have REM sleep issues and bad dreams. The numbness in my left leg is far worse.
Most importantly I have had to cancel bowls on a number of occasions.
Best wishes
Steve2
Clearly the big question is do I accept that I have Parkinson’s and go back on the
Co-careldopa and Rasagiline or do I stay off the medication ?
Steve2
If it’s not doing anything what’s the point of going back on medication?
I’ve not been offered a day scan as my neuro said if they are positive or negative they don’t rule in or out Parkinson’s it’s just an indication. If that’s true or not I have no idea.