Once we have Parkinson’s we notice the signs others show who probably have the disease. I really probably should not post on this forum. But for me every day I want to learn how others deal with PD. I think the other countries have things to learn from.
In America from talking to others here with PD the time it takes to get a diagnosis might take 5 years or longer. Our regular family doctors seem to have had just a minimal course on Parkinson’s.
Our General Family doctors have to give referral to get to a neural specialist. In my case a chiropractor looked at x rays, watched me walk and pulled on my limbs. Then told me to go see a movement specialist. Then my wife an RN went with me to an app. insisted on seeing a specialist.
Do you feel this problem might be the same in the UK. I look back and wonder if I would of gotten medicine sooner that my daily life would of been better. There would of been activities my wife and I could of done. By the time the medicine prescribed to help my disease. The parkies had progressed too far.
So now as part of my daily life if I know someone well enough and they remind me of the past. I do not hold back to say that their walk has changed, your voice is different, and so on. I don’t say Parkinson’s for I am no doctor. I just hope it points them to insist why.
One of my uncles, and aunt had PD before they passed and a cousin has PD. No one in the family talked about the secret.
We are taught to stay silent. But after reading posts on the forums from people who wonder if they might have Parkinson’s. Is the reason for their post because family doctors for the most part are no more aware that parkinson’s is not a one size fits all. The doctors treat the symptoms never putting the puzzle together.
So in your opinion is it a rude to mention your observation. Or should one remain silent.
Sometimes ignorance is bliss, but not in this case, I agree with you Tom, I have had many occasion to see my GP and other Professionals in the past few years, not one pointed out they noticed changes in my lifer may be down to PD.
Having said that, when I did go to my GP and asked him specifically why " I was living life in the slow lane"
He did some very simple basic tests and then referred me to a Neurologist who watched me walk up the corridor to meet him, asked me a few questions and again repeated the tests my GP had done, then confirmed t was Parkinson’s
From seeing my GP to being diagnosed by the Neurologist took only 3 months and within two weeks I was on medication. I am now reviewed every 6 months at the movement clinic. I am now taking 12 different pills for various complaints each day,( normally costing about £100 a month) all free on the NHS.;
I’m in agreement that local GP’s don’t know much about Parkinson’s,neither do the consultants in my eyes,I was diagnosed in January 18 so I’m pretty new to PD ,last Friday I had an appointment with my consultant and questioned him on how he came to the conclusion I have PD,he said from my family history, but when I told him my mother always said my dad had PD ,although he never progressed to get any worse or had any PD medication,the consultant looked at me and said he’d already thought it being possible I had PD ,he asked me what meds I was on,which were Co-beneldopar and Safinamide,and I told him the bottom dropped out of my world last November when he prescribed the co beneldopar,as my feet have been tremoring ever since,so he thought for a while,then said "I 'll take you off of all your PD medications now for 3 months and see what your like without them,up to yet I don’t have any tremors anywhere,but a condition I’ve had for years called Parashesia has kicked in ,and my legs are very irritable only at rest,one night the left leg,the night after it’s the other leg,I’m not sleeping very well at all with it,I get up at stupid o clock,no matter what time I go to bed,this is really getting me down ,somI went to my local GP who was kind of clueless as to what to give me for the Parashesia and help me sleep,he’s gave me something to help me sleep but it didn’t work last night,I went to bed at 22.45 and got up at 23.45 because of the irritable leg thing I get,I hope they don’t take 3 week before they kick in,that’s about it for now,bye.
Most of us in UK find the process time consuming to fully diagnose pd I am a rare case fully diagnosed within 3 months of gp referral.
Hello again Bettyblue. Here in the states we have to many people trying to get a peace of the pie. MONEY! One thing about money. If you don’t have much of it. You worry way less about how much of it you can accumulate. Your biggest worry is about people.
Not a PD thing, but magnesium supplements can help with restless leg, I believe.
From my own experience, I’d say the time to get diagnosed varies quite a lot in the UK. There are a lot of variables: symptoms, some of which are more easily recognised by GPs and neurologists than others; the GPs experience, the neurologist’s experience and, as always with the NHS, the ‘postcode lottery’ of local resources.
Due to Parkinson’s in other family members, I recognised the symptoms several years before I was diagnosed, although I kept hoping I was wrong. I first went to my GP about it 2 years before she referred me to a neurologist. The NHS neurologist I saw 3 months after referral seemed reluctant to diagnose me. By that time I was anxious to start on levodopa asap and because of NHS delays I opted to see a neurologist privately to get a diagnosis. The only regret I have about the time it took to diagnose me is that I think I would have benefitted from starting physiotherapy earlier.
Jane-L I feel the same as you about the physiotherapy. My flexibility had diminished that my wife and I passed on activities our friends enjoyed. The hands of time lost don’t have a rewind like a tv remote. If we had it to do all over again we would have been pushy to get the referrals.
First time I saw my Neuro he said “God you look gormless”. No, I jest. What he did say was, 'I knew you had Parkinson’s as soon as you walked through the door, because you have an expressionless face, you don’t smile". I was a kind of shocked thinking, that’s funny I always thought I was a happy smiley person.
That was over ten years ago and bang! I had joined the Club. They don’t mess about in Wakefield.
Westrider thanks for your reply. From what I am seeing is in the Uk getting to see the right doctor must be easier. Been thinking about how Health Insurance set the criteria on getting the referrals. Our doctors try to avoid those without insurance. They know each other often. I suspect that if a doctor sends to many patients without insurance to another doctor he or she knows. It will effect their income. Money how it changes some people. Money is one of those things that without it living is more difficult and those that have allot might have a hard time living. Because they worry about losing it. Tom
I too feel strongly that GP’s know little about Parkinsons and the need for them to be taught. In my case after I had been diagnosed, my GP didn’t think I needed to see a neurologist. Also, once my back condition had eventually been diagnosed, I saw my GP (different one, same surgery) for another matter, I asked about my condition (Captocormia) and for some advice as to how I needed to deal with, medication, physio, etc - my GP went on the internet (google) to see what it was - my GP said in all the years as a GP, had never come across Captocormia !!!
The what’s coptocomia,I’ve never heard of it either,bye.
Hello,when I first saw someone about whether I had Parkinson’s it took him about 2 minutes to say yes you have Parkinson’s,a year after I challenged him as to how he came to the conclusion that I had Parkinson’s,he said because you have tremors,I said it could be the medications I was on ,one being Tramadol,he then said that my dad had Parkinson’s that’s why you have it,but my dad had a mental breakdown when I was 15,now I’m 63,my dad never had Parkinson’s I told him,he looked puzzled then my wife said to the PD doctor that in the 20 years she knew my dad he never got any worse,because it was the medication he was taking for his nerves,the consultant looked puzzled again and said to me that he’s taking me off of all my my Parkinson’s medications for 3 months then asking to see me then,that was 2 weeks ago,and up to yet there’s no tremors or anything to do with Parkinson’s,so I’m hoping that if i"'m ok in 3 months he might discharge me ,saying I don’t have PD,but up to yet it’s only hope,bye.
Hope springs eternal Wag. I hope your doctor is correct.
When you ain’t got nothing, you ain’t nothing to loose. Dylan.
Hi Wag Coptocomia - what it means to me - is I have gradually started to bend forward and am now nearly at a 45 deg angle - and my balance is getting worse as I feel and am falling forward. This has only just begun to happen. I am fine sitting down or laying down. I understand only around 10% of Parkinson sufferers get it.
The message from my brain tells my muscles to send my body forward instead of telling it to stand straight. It is extremely painful and my stomach upwards muscles cramp up. It makes stomach acid come up into the throat despite taking medication. I have found recently it feels harder to breath as muscles are now cramping up under rib cage. I went onto internet - wish I hadn’t !!! Just hope that is all that happens. It doesn’t sound that bad writing it down, but, believe me, it is awful and I mean awful.
My Husband was diagnosed with Parkinsons by a Neurologist as he had a slight tremor in one hand. He suggested my Husband come back to see him if it got any worse. His parting remark was we can treat it with medication but did not say Parkinsons is a degenerate condition.We would have had more holidays and outings before it became more difficult if we had known that.
Don’t worry too much,that’s what I had when I was diagnosed,but I didn’t let it upset me,chin up,worse things happen at sea,bye.