Hi Charlotte
I am waiting hopefully to be assessed as a suitable candidate for DBS. Your story has given me hope, as has another member today.
I hope that your problem with saliva is remedied soon. In Liverpool we have a community outreach occupational team who deliver speech therapy and methods to help with drooling and swallowing. Maybe you have the same service where you live so that you can get help. Contact your GP for a referral or get the contact number to self refer.
Hi, I think that I initially posted in the incorrect topic , Iām sorry . Anyhow Iām 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 husbandās 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 Iām 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 Iām 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 Parkinsonās 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. Letās 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 oneās 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, Iām Sefka, and Iām a Carer for my husband who was diagnosed with PD in 2018, though itās likely he had it for some time before that. Heās 72 and Iām 61 years of age.
Now, hereās the tricky bit. HE is also MY Carer. I have lupus, rheumatoid arthritis, osteo arthritis, fibromyalgia, depression & anxiety, and PTSD.
Iām 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.
Weāre 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, itās 2nd marriage for us both - or as we say, weāre recycled!
I do ātherapeutic workā as a minder with a home-from-home dog-sitting service - looking after peoplesā dogs when they go on holiday etc. Basically itās 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 Iām new to the forum. My journey has been less fraught than some of the forum posts I have read.
I struggled at first ā¦ 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 didnāt 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. Iām feeling much more secure and on top of things now, although Iām 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. Weāre inspired by your positive outlook and scientific mindset, and we think youāre 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 donāt 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. Donāt 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 Parkinsonās. 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 Iām so much happier at work.
Good morning. My name is Stephen though my login is Broonerz. Iām 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 Parkinsonās 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 Iāve 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 Iām 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 Iām 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, youāll find some information on activity and exercise that will help you with the symptoms here. While youāre there, take some time to explore our site. Youāll find lots of helpful advice and some answers to your questions.
If youād 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 āfull blownā Parkinsonāsā¦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 Iād be most grateful.
Thank you.
Hi Pumpkin,
Weāre sorry to hear about your conflicting diagnoses. We understand that sometimes this can be a difficulty in and of itself. Youāre 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. Iām lucky got a good team from consultant,gp, physio, speech occ health. Hearing consultants and gpās say āwell nothing we can do just live with itā is positively angersome. Next time, ie phone for appointment, 1st question āhow would gp react to ānothing we can do live with it. Demand treatmentā second opinionā, whatever you think you want/need. It astounds me how many oeople get shoved aside and told āLIVE WITH ITā 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 wasnāt really the cause of my problem. In reply to another couple of posters about opening can/packaging nightmares. Try being me, Iām 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,
Iām new to the forum because I am waiting for a neurology doctorās appointment to ask for PD testing. Iāve had mystery symptoms for the last year and a half now and all the other testing isnāt pointing to anything. Itās 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):
Intermittent sleep disturbancesāI can sleep perfectly for two straight nights, feel extremely tired for bed, and then the next three nights I donāt feel sleepy at all, melatonin doesnāt 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.
Heart rate variability and paroxysmal blood pressure, especially at night, especially alongside insomniaāIām developing some kind of sensitivity to exercise where my heart rate doesnāt 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. Iāve 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.
SweatingāThis 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 Iām 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.
Sudden onset of intermittent anxiety and depressionāI 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 Iām shallow breathing, anxious, my whole body is tensed, and thereās 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 Iām feeling lethargic, I donāt want to go anywhere, and Iām not thinking about anything. Thereās no trigger for it. Iām 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.
Stiffness and issues with back, right leg, and right hipāIāve 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 ālocked inā and itās hard to move them. Iāve 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. Iām dominant right-handed but my left cramps up all the time and Iāll get pain in my fingers and knuckles. Iāve 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, Iāve noticed the sensation that I donāt 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.
I experience formication rather frequently. Itās reached a point where people ask me why Iām touching my arms or legs so much or if I have a bug on me. I have days where Iām itching myself every five seconds because it feels like I have something on my skin. Itās 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.
Bathroom difficultiesāOver the last year Iāve swung back and forth on a GI pendulum and experienced much worsening urgent urination or nighttime urination. Itās to the point that family have pointed out that I need to use the bathroom a lot, whether itās 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 āattacksā of symptoms that all happen in swarms and I will go to the bathroom 3-4 times.
As for tremor, I havenāt 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. Iāve had a few episodes of a stinging/jabbing/burning sensation in my left wrist as well.
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 couldnāt 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 itās not due to Cushingās. Bloodwork and cardiac testing (EKGs, chest echo, etc.) do not show my heart is causing the problems. Itās not my thyroid, which is checked every time I visit a doctor and every time itās 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 youāve been on quite a journey so itās 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 Parkinsonās is diagnosed.
If you want to speak to someone or need support, our Parkinsonās advisers are available on 0808 800 0303 when youāre ready.
We look forward to hearing how things go in your appointment.
Best wishes,
Janice
Forum Moderation Team
Hi Janice,
Thanks for the welcome! Iām scheduled for a neurology appointment in January. It was the earliest they had available. My cardiologist that Iāve seen because of the symptoms told me yesterday he thinks neurology is the next best destination because he doesnāt 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 Parkinsonās on fathers side, and my wifeās 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 Parkinsonās. 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 wonāt ever minimise what youāre 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 youāll find value in your time here, and we wish you the best,
Jason
Forum Moderator
