Hi, I think that I initially posted in the incorrect topic , I’m sorry . Anyhow I’m 66 yrs old and female and not quite sure if I have PD or not.
I was diagnosed with MS ( Multiple Sclerosis ) in 1992 by one lesion which showed up on MRI. The rate of progression with that has been thankfully slow although I have not been able to walk a great distance for a few years and for long outings I use a mobility scooter and for shorter distances , a rollator . That is until we went into Lockdown in March 2020 when my walking deteriorated and I found increasing difficulty turning in bed and getting myself out of bed without my husband’s help . Because of difficulty accessing my MS team I finally had an MRI in September 2020 which showed up no abnormal activity relating to MS. Fast forward to this year and I developed Bradykinesia and finally got to see my Neurologist a month ago, who categorically told me what I suspect all along that this is not MS , neither is it idiopathic PD. She put me on a low dose of Madopar for three months and has referred me for a DAT scan.
At the moment I’m feeling confused as to whether you can have both MS and PD or whether I was misdiagnosed in the first place. As well as bradykinesia I’m also getting problems with my speech - my voice has become very weak and sometimes hoarse. My neurologist also noted dystonia in my right foot, and whilst I have no tremor in my arms or hands, fine motor coordination is almost zero when it comes to handwriting and handling small items such as buttons.
My apologies for such a lengthy posting , but many thanks for reading 
Hi Ezinda, My name is Cenn (Ken) age 85 and new to this forum. I am also a forum member of BHF due to being diagnosed with Micro vascular angina which has grown worse over the years. During the summer of 2018 at keep fit classes that my instructor notice that I slowing down and a slight tremor in my left hand which over time affected the whole arm. The story to obtain a referral to see a Neurologist is too long for this post but I was finally diagnosed with Idiopathic Parkinson’s disease in July 2021. He prescribed the drug Sinemet but that has not curbed the tremor. Last week he has doubled up on the medication which I will begin this coming week. Let’s hope that gives me some relief. Thankfully I live in a block of flats with long corridors whereby during this cold weather I can still get in a 2 mile walk prior to breakfast but to control the tremor I walk with my hands behind my back. Unfortunately due to COVID the keep fit classes for us oldies have ceased.
I still swear that any exercise is beneficial to one’s aches or pains especially to us oldies. Yes , I do try and keep a positive outlook but it is frustrating sometimes. The slowing down and most stupid of all doing up buttons !!??
PS I was advised by my cardiologist nurse to keep a record of daily blood pressure , medication and above all movements !, Sound advice
Cenn
Hi, I’m Sefka, and I’m a Carer for my husband who was diagnosed with PD in 2018, though it’s likely he had it for some time before that. He’s 72 and I’m 61 years of age.
Now, here’s the tricky bit. HE is also MY Carer. I have lupus, rheumatoid arthritis, osteo arthritis, fibromyalgia, depression & anxiety, and PTSD.
I’m also as deaf as the proverbial post, and PD has made my already soft-spoken husband even more quietly-spoken, so conversations can be quite surreal in our home, as I try to figure out what he said in order to avoid asking him to repeat it for the 4th time! 
We have no other family to speak of, so we simply prop each other up as best we can.
We’re both retired; he retired in 2016 just because he chose to at that point (he was 66 then); I was medically retired back in 2001, before I met my husband. I should mention, it’s 2nd marriage for us both - or as we say, we’re recycled!
I do “therapeutic work” as a minder with a home-from-home dog-sitting service - looking after peoples’ dogs when they go on holiday etc. Basically it’s an alternative to putting the dog in kennels.
My husband helps me with that, and we do dog-walking together, me on my mobility buggy, him on foot.
It helps keep me sane, and the walking has to be good for my husband.
Hi I’m new to the forum. My journey has been less fraught than some of the forum posts I have read.
I struggled at first … hoping my symptoms would be down to something else like stress or a trapped nerve. I had tremor in right arm and leg, suddenly tiny handwriting, stiff right hand and arm and greatly reduced control of fine movement in my right hand. I also slept really poorly. I eventually mentioned my concerns to my GP on a visit. After a few quick tests he referred me to a Neurologist. Months went by and as lockdown descended I waited for the hospital appointment, my symptoms remained and seemed to worsen particularly with stress. When I finally saw the Consultant he quickly gave me an initial diagnosis of PD. Following a Dat-scan I was confirmed as having PD. A subsequent MRI ruled out other potential causes of the symptoms. As my work was being impacted eg typing and writing I opted to commence drug treatment. I initially started on Rasigilline tablets that didn’t seem to do much for me. I talked to my PD nurse and she advised that in line with the consultants recommendations I should also take levodopa tablets. The nurse emailed my GP and I started my Levodopa meds treatment a month ago and after a few days noticed a great change in my handwriting, typing and greatly reduced tremor in my right side. I’m feeling much more secure and on top of things now, although I’m nervous for what the future holds for me in terms of the progression of the disease. I know I have the support of my amazing wife and family and friends along with the PD nurses and Consultant. I keen to help with research studies and will be asking my neurologist what he recommends.
Hi Duncan,
We just wanted to say hello and welcome you to the forum. We’re inspired by your positive outlook and scientific mindset, and we think you’re going to settle in well among our lovely community. We encourage you to check out our website, where you can find loads of helpful information, like this information section for the newly diagnosed. We also have a team of knowledgeable and friendly advisers at our helpline, which you can reach at 0808 800 0303.
Again, welcome, and we wish you and yours the best.
Jason
Moderation Team
Hi Duncan,
Welcome to the forum. I have been diagnosed now for over a year although I am not on medication yet. I think that will come fairly soon but as I am now retired I don’t need to worry so much about the symptoms.
Like you the process of diagnosis took a very long time but when I got the results from the DaTScan it was quite a relief to know what was wrong with me. I have heard of and know personally people who have had PD for a very long time (over 10 years) and still lead entirely normal and active lives and continue in paid employment. Of course it affects everybody differently but PD by itself is not a cause for despair. Don’t worry about the future - whatever will be, will be - just think that for many years you should be able to continue doing the things that you want to do.
As for research I really wanted to get involved in this and still do but after trying to volunteer a couple of times and getting no response from the emails I sent to the names given on the PD UK research pages I have given up for now. I hope you have better luck
Mark
Thanks Mark your kind words are much appreciated. I have just seen my neurologist last week and have already participated in a genetic study into genetic markers that may signal some people being predisposed to developing Parkinson’s. This involved giving blood and a few tests walking etc. The consultant tweeked my meds and upped the dosage which seems to have worked well.
On a negative note despite my consultant saying he had no concerns with me driving the DVLA have decided that I have to have a medical driving licence which will be reviewed every 3 years!!! .
My drug treatment is a revelation and I’m so much happier at work.
Good morning. My name is Stephen though my login is Broonerz. I’m 61 and live on a Scottish island. I retired early due, in part, to coronary heart disease. Within the past month I have had a preliminary GP diagnosis of Parkinson’s and although this is yet to be confirmed (the waiting list for a neuro appt is open ended due to Covid etc) joining the dots this diagnosis makes sense. Although only recently has a label been attached to my symptoms I would guess that Ive probably been displaying signs of the condition for about 10 yrs or more that went unrecognised . However, it is only recently that these have progressed to the stage where I’ve been diagnosed. Symptoms include - very still shoulder; inability to full bend or straight my right arm; loss of fine motor control in right hand so difficulty in writing, shaving and brushing my teeth etc; loss of balance; fatigue and most recently severe headaches. Obviously this is worrying both for my quality of life and life expectancy. Having no confirmed diagnosis I’m not on any meds so I suppose my first question would be how likely is it that meds will improve these symptoms?
Hello and welcome @Broonerz. We have a very friendly forum here and I’m sure you will be hearing from our members soon with their own stories about their medications, since it is a very individual experience.
As well as medication, you’ll find some information on activity and exercise that will help you with the symptoms here. While you’re there, take some time to explore our site. You’ll find lots of helpful advice and some answers to your questions.
If you’d like to speak to someone while you wait for your next appointment, you can ring our helpine on 0808 800 0303. Our advisers are there to support you.
Best wishes,
Janice
Forum Moderation Team
Hello! I am a newbie here. My problem is one neurologist said I have “full blown” Parkinson’s…Another tells me I have Parkinsonism due to the amount of medication I take.
Neither my Neuro. or my GP are willing to do anything and my GP says I have to learn to live with it. It began with trembling that I could not control. Then I had a stroke and the trembling got worse. I cant even write my name! I have now developed tardive Dyskinesia where I cannot control my head and facial muscles. I need help. If anyone can give advice I’d be most grateful.
Thank you.
Hi Pumpkin,
We’re sorry to hear about your conflicting diagnoses. We understand that sometimes this can be a difficulty in and of itself. You’re likely to hear as much from our other members soon. We would recommend calling our free and confidential helpline at 0808 800 0303, as they can help with these kinds of things, and are happy to do so. You may also find some helpful information on our website, here.
Wishing you clarity and offering our warmest welcome,
Jason
Forum Moderator
Thank you for your warm welcome.I will keep trying to. get through to the helpline, thank you.
Hi your post makes me, normally laid back,fizz with anger. I’m lucky got a good team from consultant,gp, physio, speech occ health. Hearing consultants and gp’s say ‘well nothing we can do just live with it’ is positively angersome. Next time, ie phone for appointment, 1st question ‘how would gp react to ‘nothing we can do live with it. Demand treatment’ second opinion’, whatever you think you want/need. It astounds me how many oeople get shoved aside and told ‘LIVE WITH IT’ i have to say my medical support has been very good. Even down to ortho consultant who had been treating me for hip, back and knee pain.both of us conviced it was musculoskeletal cause. Both of us laughed at the time dpent on trying to fix a problem that wasn’t really the cause of my problem. In reply to another couple of posters about opening can/packaging nightmares. Try being me, I’m left handed makes everything a bit more problematical. Anyway good luck and fight your corner, noone should be denied treatment because medical staff are short in knowledge
Hi all,
I’m new to the forum because I am waiting for a neurology doctor’s appointment to ask for PD testing. I’ve had mystery symptoms for the last year and a half now and all the other testing isn’t pointing to anything. It’s time for neurology to get involved. PD is my personal guess based on the collection of symptoms. I look forward to the doctor trying to prove me wrong.
Main symptoms at age 34 (female):
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Intermittent sleep disturbances—I can sleep perfectly for two straight nights, feel extremely tired for bed, and then the next three nights I don’t feel sleepy at all, melatonin doesn’t work, I feel restless and alert in a survival kind of way. Then, when I do fall asleep, I wake up frequently without ever falling into deep sleep. Exercise past a certain point can also cause failure to sleep restfully.
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Heart rate variability and paroxysmal blood pressure, especially at night, especially alongside insomnia—I’m developing some kind of sensitivity to exercise where my heart rate doesn’t recover from moderate aerobic exercise. I also will develop palpitations at random times and become very aware of a throbbing heart that I feel especially in my neck or stomach. I’ve also had feelings like I have an arrhythmia but these are very infrequent. The blood pressure issues can range from 149/98 while at rest or trying to sleep and then I will go into the doctor office and have 121/78.
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Sweating—This goes hand in hand with the sleep problems and heart rate issue. I sweat buckets from exercise. Just walking to a train to go to work will leave me with fogged glasses in an air-conditioned office because I’m giving off so much heat, and it will last for a half-hour before it calms down. Sweating and feeling overheated is very common at night as well.
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Sudden onset of intermittent anxiety and depression—I started experiencing strong attacks of anxiety that would come on like a panic attack. Those have calmed down a bit but I still have days where I’m shallow breathing, anxious, my whole body is tensed, and there’s no reason for it. I lead a pretty quiet and easy life and I feel intense physical symptoms of anxiety with nothing precipitating it. And then I can wake up from a good night of sleep and feel perfectly fine for a few days. And then it starts over again. Or I wake up deeply fatigued for no reason and I’m feeling lethargic, I don’t want to go anywhere, and I’m not thinking about anything. There’s no trigger for it. I’m just down. And then I sleep well and pop back up the next day in a new mood. This has all become really roller coaster-like over the last year and a half.
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Stiffness and issues with back, right leg, and right hip—I’ve had problems with back stiffness since I was about 16. But especially since turning 30 my hip flexors have become almost nonexistent. Even though I have a long history of walking everywhere, cycling (I used to bike commute for several years), running since 2015, and swimming (since 2016), I struggle with a perpetually tight right hip and a perpetually tight right hamstring along with more stooped posture over the last year. No amount of exercise or movement helps the hip and leg. I can sit down for 10 minutes in a crosslegged position and when I try to get up my knees and hips have “locked in” and it’s hard to move them. I’ve also noticed that my left glute has just stopped working. I walk up and down hills where I live and I never feel the left glute activating. I also struggle with my left hand weakening and feeling achy and stiff. I’m dominant right-handed but my left cramps up all the time and I’ll get pain in my fingers and knuckles. I’ve started waking up sometimes with clenched toes in my right foot. Also a burning right toe. A big deal is also climbing stairs. My legs, especially my right leg, weakens and becomes very heavy very quickly. Relatedly, going downstairs, I’ve noticed the sensation that I don’t feel quite as agile on my feet and I get off-balance and feel like I need to carefully watch where I put each step.
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I experience formication rather frequently. It’s reached a point where people ask me why I’m touching my arms or legs so much or if I have a bug on me. I have days where I’m itching myself every five seconds because it feels like I have something on my skin. It’s especially strong on my legs and also my face and is worse at night, such where the feeling of the blankets on my legs is too much sensitivity.
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Bathroom difficulties—Over the last year I’ve swung back and forth on a GI pendulum and experienced much worsening urgent urination or nighttime urination. It’s to the point that family have pointed out that I need to use the bathroom a lot, whether it’s when we got out places or just over the course of a whole day. When I did urine testing, the volume I turned in shocked the medical assistant. The nighttime urination has become a major topic with some nights where I have “attacks” of symptoms that all happen in swarms and I will go to the bathroom 3-4 times.
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As for tremor, I haven’t developed a regular tremor but I have noticed at least 3-4 instances over the last year of my left pinky twitching/moving on its own as well as my left pinky and ring finger going numb, mostly at night or realizing upon waking. The twitching will usually last anywhere from an hour to most of a day. I’ve had a few episodes of a stinging/jabbing/burning sensation in my left wrist as well.
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Finally, I recently went through covid and lost my sense of smell and taste for about six weeks. However, although it all finally came back, it is dramatically poorer than it previously was. I mopped the floor yesterday (which caused me back pain and wore me out within just a half-hour of sweeping and mopping) and I couldn’t smell any of the cleaning products I used in the room.
So far the only thing my bloodwork has confirmed is that I have high serum cortisol and high urinary cortisol but it’s not due to Cushing’s. Bloodwork and cardiac testing (EKGs, chest echo, etc.) do not show my heart is causing the problems. It’s not my thyroid, which is checked every time I visit a doctor and every time it’s normal. This will be my first time seeing a neurologist about everything that has been happening.
Hi and welcome to our friendly forum, @manwelio. Waiting for an appointment can feel like forever. Have you been given any idea when it might happen? Our other members are sure to jump in with their own stories and what led up to their diagnosis.
It sounds like you’ve been on quite a journey so it’s time for some answers and a plan going forward. I hope this comes sooner rather than later.
Meanwhile, do explore our site. It could answer a lot of your questions and tell you how Parkinson’s is diagnosed.
If you want to speak to someone or need support, our Parkinson’s advisers are available on 0808 800 0303 when you’re ready.
We look forward to hearing how things go in your appointment.
Best wishes,
Janice
Forum Moderation Team
Hi Janice,
Thanks for the welcome! I’m scheduled for a neurology appointment in January. It was the earliest they had available. My cardiologist that I’ve seen because of the symptoms told me yesterday he thinks neurology is the next best destination because he doesn’t think my heart itself has problems. I did a stress test this week and they found nothing wrong except that I have occasional skipped beats that go away with exercise. I asked him are my struggles autonomic and he said they could be.
I have an event monitor for the next week to try to catch when I have these episodes brought on after exercise.
Hi
I am new to the forum, after getting a formal diagnosis a couple of months ago at the age of 54, but I have shown signs for at least the last 5 years. Mostly ignored by my GP when brought to their attention over the years and it last two years symptoms put down to long COVID!
Having family history of Parkinson’s on fathers side, and my wife’s father a former Parkinson sufferer it was something I was watching for. So it was kind of a relief when a new doctor linked all the symptoms and medical history and sent me for tests etc. leading to formal diagnosis
Whilst I am coping with physical sides of it tremors etc fairly well. It is the mental aspects that are hidden to most people I meet, I struggle with most such as; depressive thoughts, frequent periods of vagueness and fuzzy thoughts. speech problems forgetting words, names etc. I am taking Madopar at present which has helped a bit with mood swings but not a lot of change with physical side of parkinsons
I am also finding it difficult to come to terms of the loss of my career, having previously worked as a senior engineer on ships for over 35 years, I can no longer find suitable jobs due to medical restrictions, And when looking for work locally find a big reluctance to take on some one with a progressive illness such as Parkinson’s. Is this the same case of others in the group?
Hi Adewrigs,
We noticed this was your first post and wanted to take a moment to welcome you to the forum community. We won’t ever minimise what you’re going through, but we can assure you that you are not alone in it. You are sure to hear from our lovely forum members soon, always with some measure of advice and support to share. Please do have a look at our website, which can be a rich resource for loads of different kinds of data. This section might be a good place to start. Added to this, we have a free and confidential helpline staffed with advisers who can answer any questions you might have, connect you with groups and orgs in your area, and just lend an ear. You can reach them at 0808 800 0303.
We hope you’ll find value in your time here, and we wish you the best,
Jason
Forum Moderator
Hello Adewrigs and welcome to the forum.
On reading your post two things immediately came to mind but I wasn’t sure which way round to put them because in a way they are linked, First it was that your family history will give you some understanding of the condition that many do not have when newly diagnosed, indeed you wrote that it was something you were watching out for. The second is that you now have a formal diagnosis of Parkinson’s yourself. There is a subtle but nonetheless distinct difference between having some knowledge and understanding of Parkinson’s and having it yourself. While you will undoubtedly recognise some elements that you may experience as similar to those of your relatives, it doesn’t mean you will react in the same way or that they will have the same impact. What you are is a unique individual whose experience of Parkinson’s will be uniquely yours.
You have only had your diagnosis a short time and like many at that stage your brain goes into overdrive with all sorts of conflicting thoughts and emotions as you try to find out what your future may look like or indeed if you can see any future for yourself. at all. In one way or another we’ve all been where you are now and have come out the other side, and you may not believe it at the moment but so will you… It takes time, I can’t say how long because it’s your time.line and will take as long as it takes. Medication is often a bit trial and error to find the routine that suits you and it does take time to get used to the diagnosis but it is good that you are already aware of some things, notably the loss of your career. It sounds to me as if your work was important to you and that you were good at what you did which gave you a certain status that was important to you as a person. That may not be wholly accurate of course as I know nothing of what your work entailed but I suspect you will see some truth in that somewhere. What you are experiencing is similar to a bereavement, a grief process common in the early days when life has dealt you a hammer blow and the life you saw for your future seems to be no more, it feels like everything will be different. Up to a point that is true, Parkinson’s is life changing but in most it is slow moving and there is time to change and adapt in such a way you can still have a quality of life and a life of worth in which you will be able to make a positive contribution. I know this is not a lot of help in terms of practicalities but my feeling is the conflict in your brain is the big issue for you being pulled every which way with no concrete answers. Give it time, don’t be so hard on yourself, and don’t try to sort out everything at once. As things get sorted, as you get used to the diagnosis and find ways to cope and manage that which seems too much just now you will start to come into a calmer patch and when the time is right for you join us all on the forum who survived the early days, lived to tell the tale and learnt that Parkinson’s is not a one way street down to a black hole unless you choose it to be - and I don’t believe that will be your choice.
Tot