Good morning Tot & everyone … I’ve had another “Today was a bad day”. It was yesterday, I will admit I’ve been playing Indoor Bowls for 8 of the last 9 days, Indoor bowls is not tiring, with 8 players I spend 7/8ths of the time sitting down. So yesterday I was playing in an important Club Men’s County game. for my club in one of our 4 man teams.
Almost immediately both my arms & legs felt incredibly weak & I had a strange shaking feeling inside me, a sort of light headedness, nothing like I have experienced before with Parkinson’s. To the extent that I could not bowl my bowl very far at all. This was incredibly embarrassing & I feel I let myself & my team down. I am normally of the required standard for a normal bowler not a disabled one.
When I got home I felt I was close to passing out. I was not close to it literally but I felt it was the next stage. I felt really weird.
So I phoned 1 1 1 & went through all their usual questions to find out if you are having a heart attack or have had a stroke. They arranged for me to see a GP at 5 o clock today. This morning that Gp phoned me & suggested cancelling as I clearly was suffering with a pre-existing condition & they would not be able to help. I agreed as I am struggling to walk.
I don’t feel any better today after a reasonable night’s sleep & I have cancelled bowls today & tomorrow.
Its so disappointing to see how 111, and out of hours gps lack empathy . I hope you can see your own gp tomorrow steve, who should at least check your bp, do some bloods if required. Just because you have a pd diagnosis doesnt mean other things cant happen as well. Obviously the mobility issue’s do create problems to reach a gp. We find any appointments after lunch can be a problem as wear off for j tends to increase through the day. Its also harder when you are on ur own as anxiety kicks in, which exacerbates all symptoms. We send virtual hugs , and hope you feel better soon, just get on to your practice asap in the morning. Keep us updated
Hello Jandc … Thanks for the virtual hugs & your concern & interest. I knew phoning 111
would be a waist of time & it was.
I won’t be phoning my Gp tomorrow as quite a lot is happening medically for me. I have my second visit to see the Musculoskeletal physiotherapist on Thursday & I shall mention it to her. Then I have the invasive bladder check in a few weeks time & my excellent new Gp has written to Benenden Health to instigate a “Private” sleep diagnostic test. So that’s three things on the go & my new “I feel really weird” might just complicate things a bit.
My money is on … although I’ve not done much I may have done too much bowling & overdone it & I’m so blankety blank tired all the time through lack of proper sleep.
I don’t want to contact my Parkinson’s nurse as he will only want to tweak my medication & I don’t want that.
Hi Steve
I’ll be back later, I struggle to read but want to do this thread justice as it resonates with me.
Re: dentist before I forget. The reclining treatment chairs are utter torture, aren’t they? I do feel that while mine is taking reasonably good care of my mouth, the rest of me just happens to be there to take my mouth to the appointment and my physical comfort, or lack thereof, is an irrelevance.
Back later!
Certainly an awful couple of weeks for me. Another Indoor bowls friend died a few days ago from Stomach Cancer. He didn’t know he had, just a pain in his back that was troubling him, not enough to stop him bowling. So he went to hospital to get it checked out, they discovered his cancer, kept him in hospital & 2 days later he died.
This morning I woke at 2am & could not get back to sleep.
My Musculoskeletal physiotherapy appointment got cancelled for the third time yesterday.
Today I got an email from the Musculoskeletal physiotherapy head of department asking whether my condition was getting better or worse.
Today I got an email from one of my local hospital Urology departments giving me a date for my cystography in 6 weeks time. [Camera up the you know where to look at the inside of my bladder].
Hello Steve2
I have been on the Forum a long, long time, but I don’t think I have ever spoken to you; and it seems strange because you have almost exactly the same symptoms as me! I too have spinal stenosis, which is kind of my worst thing I think, because it affects mobility so much - but mine is alleviated by sitting or leaning forward - when I try to walk, I look like one of those from the Seven Ages of Man, and end up at half my normal height! I have tried everything over the years, even yoga, which I don’t really enjoy. However, recently I came back to it again, and I have to say it is doing me some good at last. I don’t think you will agree to try it, and I understand why, but I felt I should at least record it here because believe me, I really have been everywhere with this. It’s so utterly depressing. I think the stretching part of yoga is what is good - so maybe you could find someone who would just do ordinary stretching with you? It also helps to build up muscles, which is so necessary. It has
Hello to you both
Have you had a look at you tube? I’ve just had a quick look and there are several videos incl this one which explains very clearly what spinal stenosis is with 3 key exercises - all of which will help the Parkinsons where stretching is also important. Might be worth a look.
Tot
That’s great, thank you. Sorry for late response, but had a tough night. Suffering from REM sleep disorder as well as newly-diagnosed Parkinson’s-related anxiety disorder (who knew?!) which manifested itself by waking me up in the middle of a panic attack (which I have never had before). But enough moaning. Let’s start the day with spinal stenosis as usual, making a cup of tea with your hands on the floor is never easy… I can see why the bowls would encourage the kind of movements we need Steve, and as you say, it doesn’t matter how we get results. It’s great that you play so much. I am doing yoga three times a week now (that’s a lot) but although I find it a bit serious, it does seem to improve the symptoms a bit, so it has to be good. Sometimes I get overwhelmed with all the problems there are just to get through the next half an hour though…
Morning Tamsin … I too had a bad night. It wasn’t really a nightmare but a most unpleasant dream about the work I did & the problems I had. Some of my dreams are amazing & I dream in detail about things I have no interest in or know anything about. I cannot explain these dreams, some are way in the future. I used to play hockey & football & I dream I am playing in a match. Almost an hour of activity, I bet I am thrashing around in my sleep, the bed is usually wrecked when I wake up.
I am due to see a Somnologist [sleep clinic] through Benenden health. I pay £15.50 a month & I will get a private referral to see a Bupa consultant for free. You have to be a member for 6 months before you can get a referral. Also the NHS wait list has to be longer than the private option. So hopefully that will help me.
My back is hurting again this morning [spinal stenosis] as it does every morning but the pain does go after an hour or two & it’s not that troublesome. Mixed Indoor Bowls match this afternoon at an away club. I hope I play as well as I did yesterday.
I do suffer from stress & the silliest things can upset me. My writing has become quite bad, not that I write often. Just things like writing in my diary & the odd time I have to sign my name. I like to eat alone as I shake when taking my fork to my mouth & I am so slow eating & I can’t carry a cup of tea / coffee without spilling the lot.
Why don’t you treat yourself to a cup with a lid Steve2 and I don’t mean a two handled cup with lid and spout, I mean an ordinary cup with a lid - some of them lockable - which can be removed for drinking when you get to your chair. There are all sorts af ‘on the go’ cups these days which have some kind of spill proof top. Alternatively use a thermos flask to transport your drink and pour it out when you get to your chair. Personally I only fill my cup about 2/3 full to allow for spillage room lol
Tot
Hi Tot … Good idea, but what I do is take my empty mug into my bedroom & put it on to my bedside cupboard. I have already put in the milk & sugar. I then boil half a kettle of water in the kitchen & carry the kettle & fill up my mug. This works well.
Now if I have a guest I go to plan B which is they make the tea or carry the mugs to the table.
Hi Steve, I also have restless legs syndrome (day and night), so my bed looks like a war zone in the morning as well! In the daytime, this condition is plain embarrassing, the rest of me is normal (to a point)but my legs are continually on the dance floor! It doesn’t really help in yoga either, I am a bit of a disruption to the class. The pain from spinal stenosis wears off with me too, but it is always present to some degree. The exercises involving leaning forward are fine for me, but my problem is that I cannot stand up straight, whatever I do. Standing against the wall, for example, practically none of me is touching it! My morning got better today though, just for having contact with someone who understands what I am talking about. I hope you have a good game today - I think bowls will be your saviour! Enjoy!
I take Amitriptyline for the spinal stenosis pain & it works really well, Before this I was on Ibuprofen [which also works], but I am not allowed this as I am over 70 years old.
If I don’t take these drugs I cannot move my head. It feels like there is a knife stuck between my shoulder blades. I can feel the pain now but only at the 1/10 level.
My main problems are gait freezing & walking much more than 80 yards. Also if I sit down for 10 minutes plus, I struggle to move my feet & legs. If I lie in bed & get up I’m fine.
Yes, I was taking Ibuprofen and it worked a bit, but they told me to stop as well. You have just reminded me that my spinal stenosis started in my neck and In literally couldn’t turn my head at all. But then the pain moved, and now it’s been in the same place for about 5 years. They are so weird about prescribing proper painkillers aren’t they? - when you think what a difference they can make to quality of life. My pain gets worse the further I walk (which nowadays is not very far). You are lucky you can get out of bed, this is becoming increasingly difficult for me and I start to panic, thinking I will get stuck there! I used to love having a nap in the daytime, but now anything to do with going to bed has become a huge battle! Also a couple of years ago I suffered a bit of a setback because I had a fall in the bathroom and was not found for 3 days. So I nearly had it, and it knocked my confidence hugely as well as all the other implications of such an event!
As long as you are sorted Steve2. Some time ago when my meds were a bit out of kilter and the evenings were a bit of a non starter, I actually put a tv, travel kettle, cups, coffee, tea, bottled water etc in my bedroom with a small jug of milk or I collect those small portions of milk if in a cafe - I don’t have milk in coffee but pay the same as those .who use milk so figure I am entitled to take mine home. So I can always make a fresh drink if I retire to the bedroom early and be quite comfortable. I actually use it most frequently in the morning to have an early morning cuppa before I get going. The travel ketttle is great because it is small (enough for 2 cups) but light. Looks a bit like a hotel room I must admit but so what if it means I can manage.
Tot
