I’m Jon 66 years old and newly diagnosed(?) with PD. I’m told I have ‘classic’ symptoms but feel like the overworked Nhs doesn’t have enough time to fully explore the diagnosis.
I haven’t really been able to accept the news either so excuse my ignorance. There’s so much to learn in such a small amount of time.
I’m here on this forum to see if other folk have had similarly speedy diagnoses. Maybe I’m just in denial! Apart from having several falls, resting one sided tremors and having had a series of clinical neurological tests to establish my pain, lack of flexibility in muscle tone and some memory /brain fog problems - I am in reasonable health. I’ve had no scans or nerve signal examinations. And there doesn’t seem any likelihood that this will happen soon.
I’ve been given levodopa to ease symptoms but also to help confirm the diagnosis.
There is lots online about fancy modern research into more definitive testing and I wondered if these would be routinely available on the NHS anytime?
It would really help if I could talk things through with more experienced PD folks.
Thanks for reading!
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J0nstandard
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Great site Tom! I added a link to your site from my web pages of interest page: rbd-pd-protocols.blogspot.c... (let me know if you would like the description improved).
Thanks very much! - really interesting reading. I seem to fit the bill re tremor. I’d also say that I can have good days and bad days. Is this typical in your experience?
Learn all you can about PD. Go to Parkinson.org to order free booklets and other info about Parkinson's. Keep a log of your Movement Disorder Specialist visits so you don't forget those questions you want to ask and write down the answers. Wishing you the best.
No, the NHS doesn’t routinely scan people with PD. That’s because the only one that works is a DATscan, which can only confirm a clinical diagnosis. It is used occasionally but not routinely.
Sometimes a DATscan produces a SWEDD - Scan Without Evidence of Dopaminergic Deficit. This is where the scan is normal but the clinical signs say PD, so it’s not sufficiently accurate for routine use.
Yes I have been through the DAT scan twice, but that was due the first time to Epilim for my epilepsy, long term use in 2016, [my father had PD], it was negative, then after severe reaction to AZ vaccine in 2021, [both injections in my left arm, a reaction to Schwannomatosis NF3] I was again subjected to it, again negative, the same doctor both times. I now have serious "essential tremors" in my left hand, but that 100% was due to the AZ vaccine! I still have the threat of PD hanging over me, and as you say Cagey84 I never really had much faith in it's accuracy🙄
Morning Cagey24 - thanks lots for the reply. This forum is a godsend!!
About 6 years ago I had a spell in the Movement Disorder Clinic due to suspected TIA - had a brain scan then (normal) and found it very difficult and stressful. Discovered a trigger for claustrophobia for sure.
On reflection that was possibly the start of my PD symptoms albeit atypical at that point.
Some folks say that a diagnosis can take months/years? I’m not bothered so much about that - but would just appreciate finding ways to deal with the symptoms asap.
Thankyou for this - maybe this diagnosis is a good wake up call.
I’m not exactly lazy - I cycle and hill walk and do Pilates - but… all things that I have been finding so much more difficult to do since covid - because of muscle stiffness and a ridiculous tiredness! Would you say that exercise is effective at reducing symptoms?
Yes I think it helps some people. I think that and a Mediterranean diet and stress reduction is likely to slow down progression at least.
But note stress reduction does not mean avoiding all stress. You need to keep doing as much as you can even if it is hard so you don’t lose that function. (Use it or lose it).
Have you had blood tests to pick up any deficiencies? Lots of people have low b12 and folate .
Yes - I have low B12 and folate. I’ve been taking the meds to rebalance this for a long time however. I’ve attributed the crushing tiredness I feel to this in the past.
And thanks!! I hear what you say about use it or lose it. There’s little chance of stopping me walking in the hills (unless I’m truly unable to do so one day).
Your diagnosis looks sound. The other tests are more helpful for earlier diagnosis or resolving uncertain diagnosis. i had a DAT scan to eliminate drug induced parkinsonism. If you respond to levadopa its definitely PD
Don't panic! there is a lot in the pipe, and whilst its not something you would choose, it's probably less bad than you think
The one sure help to slow down PD is exercising.Find your nearest P.D Warrior classes,if you have been assigned a PD specialist nurse( which you should have been)she should direct you to a good class.It’s a 10 week course that will teach you special ways to retrain your brainDont expect anything from the NHS.They are at breaking point,but most neurologists can’t think outside the box,and have no time for alternative therapies and supplements that many of us have found really helpful.Search this website for things other members have found that have helped their symptoms.One size doesn’t fit all,but it will give you a general idea what you need.Research supplement purity,lots out there have so many fillers and binders that they are t worth your hard earned money.Parkinsons isn’t the end of the world,there are loads of things you can do to keep on having an active happy life for the foreseeable future.
Hi Jonstandard. I have had PD for over 30 years and at the age of nearly 89 I am still enjoying a good life.
I have been doing BRISK WALKING for many years, every second day for up to half an hour.
I used to do BRISK WALKING for an hour every second day but now I only do brisk walkking for half an hour every second day and am keeping fit and feeling well.
Try doing BRISK WALKKING because it is the ONLY WAY i KNOW HOW TO OVERCOME THE SYMPTOMS OF PD. tHERE IS NO CURE SO, GET USED TO IT!
Hey Jon, sorry to hear about your diagnosis but you are in the right place to learn more about pd and what lifestyle changes can help you do better. Do you have any autonomic dysfunction - bladder issues, less or more sweating. Is smell or taste affected in any way?
Thanks for your message. I feel like this forum is soooo useful and reassuring.
I’m a coeliac so the gut issues I’ve been having seemed to be related to that. But it now seems that it could be down to early stages of PD.
Chronic (like 6-7) years of constipation and bloating and I thought I was lactose intolerant at one point. It was never fully followed up because the GP just attributed it to Coeliac.
My sense of taste rather than smell is off. Although that’s not something too hard to cope with - Is that a PD thing?
My husbands sense of smell wasn’t great quite a few years before his diagnosis. It comes back now and again.
Mostly sorted out constipation, not full proof, though with organic inulin, prunes, dried apricots and lots of berry fruits. Also whole meal grains but not sure if you are coeliac whether your diet has to be adapted to that. We stick to mostly Mediterranean diet, with wine and lots of freshly prepared food!
Lack of arm swing was another initial symptom but funnily enough it’s come back!
He does quite a few other things, I ll try and bring my profile up to date!
Zella23, I'm curious, was the lack of arm swing one sided, or on both sides? My husband had lack of arm swing, only on one side for many years as well as lack of good ability to smell for many years before diagnosis.
Both sides I think I noticed, gradually as the shoulders seemed stiffer and didn’t move as they had been doing. Sense of smell had been problematic for many years before diagnosis.
My husbands diagnosis was similar, a private Neurologist, but we have since changed. He was never interested much in alternative treatments but never put us off them, called it the holistic approach.
Plenty of information on this Forum, it’s been so helpful and beneficial to us. Have tried many things to help with symptoms. Settled on some alternatives and stuck with the ones that seem to help.
In 8 years only seen a Parkinson’s nurse twice and only after many phone calls and emails.
The Neurologist my husband sees now is in Queens Square on the NHS, and he is really approachable and helpful. Not sure where you live, but there are some Neurologists that are excellent.
Hi Jon. You've gotten some great advice on this site. An amazing group of resilient and resourceful people who were/are where you are today. The shock and anxiety was the hardest thing to manage IMO. It exacerbates all symptoms you currently have. Invest in things that will calm your mind. This disease generally progresses very slowly, so try not to do the "what if's". There is a clinical trial you may be interested in. Biogen changed it from 5 years of diagnoses to two and have included idiopathic PD and not just people with the LRRK2 gene. classic.clinicaltrials.gov/...
I follow Dr Corcoran’s research about exercise. I’ve had PD for 2+ yrs w right side tremor. Nothing else and no meds. I also follow a MIND diet and stake supplements. Take a look at NAC and Taurine for your tremors. It has reduced mine.
A very good introduction is this little video done by a anesthetologist who it is very good at describing things simply and easily. Very good for newbies but even some of us who've been diagnosed a while.
Also there is this which is an excellent intro to diagnostic exam provided here in this video by a Stanford University neurologist. Both the bit of reading AND the embedded video.
I second the suggestion to check out Laura Mischley's work.
Also endorse the suggestion to "Invest in things that will calm your mind." My spouse uses a meditation app called "Waking Up." I believe they offer a free trial, so you can see if it resonates before committing.
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