EOPD females help

Hi my name is Donna I am a 50yr old mother of 2 with 2 grandchildren. I am awaiting a diagnosis of early onset PD. I started having strange symptoms 2 yrs ago, after an appointment with a neurologists registrar & an MRI I was told I had essential tremor & it would be a mild inconvenience at most. Over the last 2 years I have noticed symptoms changing & have seen GPS, physios & talked to a rheumatologist. I was told I had frozen shoulders & had treatment for that with no difference. I started to notice a change in the way I walked, I felt off balance & my right arm
didn’t swing when I walked, my fatigue became overwhelming & I felt very stiff. I also struggled with stuttering speech & words not coming out right or not at all. My tremor isn’t that bad & when I’m at home relaxed it barely moves at all. I saw the consultant neurologist on the 7th Dec expecting a change of my ET meds. After examining me he said it looked like early onset PD. This came as a huge shock to say the least. I have had blood tests done that have all come back normal but I’m still waiting for a DaT scan. I have read lots of stories online from people with PD, Some days I think no he’s wrong I don’t fit the normal PD symptoms & other days I think that’s definitely me. Are there any females on here that have the same symptoms as me ? There is so much info about older men out there but I can find very little from young women. I’m so confused, scared & frustrated. I have only told my husband about the possible diagnosis but I don’t feel I can tell the rest of my family until I’m 100% sure I have it. Sorry for the long post but I didn’t know where else to turn. Thank you x

Hi Donna, and a warm welcome to the forum.

I’m sure you’ll receive responses from your fellow members, however, I just wanted to say hi and let you know that we have a lot of beneficial information on our website at Parkinsons.org.uk including daily activities and research news. You can also call us at 0808 800 0303 for free and confidential one-on-one support.

Here we have a lovely community with other members who can relate to what you’re going through so I’m sure it won’t be long until you hear from some of them with their own advice.
In the meanwhile, I’d encourage you to look around and see what you discover.

Best wishes,
Moderation Team

Hello Dildon
Welcome to the forum and the feelings you have about a possible Parkinson’s diagnosis are entirely understandable and quite normal. It may seem like you are getting nowhere fast but it is not always easy to get a definitive diagnosis and it can get complicated because other conditions can present with similar symptoms.
I was 53 when diagnosed, only a few years older than you are now, that was 13 years ago, and I no longer work but otherwise am still happily living on my own, getting about and doing what I want to do. I am actually quite content with my lot although I know you will find that hard to believe.
I think the key thing I can tell you at the moment is try and stay calm if you can, I appreciate that’s not easy but worrying won’t change the eventual diagnosis whether you have Parkinson’s or not. I would also suggest you don’t go mad reading anything and everything - chances are you will end up with information overload and only remember the blackest of black scenarios, which is not the reality.
I just want to comment on a couple of things you mentioned for now. First you wrote about not fitting normal PD symptoms. Parkinson’s is a strange condition in many ways, it is often described as being individual. That is because we can share many symptoms but the effect or impact on any individual can vary enormously and that may be why you feel like you don’t fit. Interestingly I too was diagnosed with frozen shoulder before my Parkinson’s diagnosis. I later found out that frozen shoulder may sometimes be an early indicator of Parkinson’s but this possible connection is often not considered because there is no reason to see it as anything other than a stand alone condition. When to tell people is an issue everyone who has Parkinson’s has had to grapple with at some time or another. The short answer is other than the DVLA if you drive (and it doesn’t mean you have to give up driving) you are not obliged to tell anyone anything unless you choose to, not even your employer. You can even tell your employer that you have a medical condition so that any support or workplace adjustments you might need can be given, but you don’t actually have to say it’s Parkinson’s. Personally I opted to be open about it from the beginning, saves people second guessing wrongly because little things slip out (it’s called non verbal cue or communication leakage) but everyone makes up their own minds about that - like so much in Parkinson’s there is no right or wrong way only the way that suits you. I did wait until I had a formal diagnosis.
The period leading up to diagnosis and immediately after is a difficult time for many of us everything becomes uncertain and it can be confusing and frightening, but things do settle down and 13 years on I still have a good life albeit not the one I saw for myself.
Try and stay calm, take each day as it comes and accept any feelings are normal and probably very changeable. The diagnosis will be made when it can and if it is Parkinson’s you will find a way to come out the other side and be able to live with it. It can take time and it’s not always easy but things do settle.
Let us know how you get on.
Best wishes.

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Thank you Tot, I’m trying to stay positive but some days are easier than others. Will just have to wait for the scan & see what happens from there.
Best wishes

Hi, I’m 58 & had a similar set of symptoms, including the frozen shoulder, and balance problems, reduced arm swing, and a tremor, and stiffness (in one hand). I was diagnosed with Parkinson’s and started on levodopa which had some effect. Then some months later I noticed that my symptoms improved after lying down. By this time my postural instability was so bad that I needed assistance to walk. I also had a few trips to A&E with a rapid heart rate (which can be a side-effect of levodopa).

I spent a lot of time researching what could be wrong, and I saw a specialist in CSF leaks and was diagnosed with Spontaneous Intracranial Hypotension which was then treated successfully with an epidural blood patch. My instability resolved overnight, and my other symptoms (hand stiffness, high blood pressure, rapid heart rate) within days. I still have a slight tremor (Parkinsonian in origin, confirmed with a DaTscan & perhaps caused by mechanical damage due to brain slump), but it’s improving since treatment and I’m hopeful of further recovery. I’m no longer on any Parkinson’s medication.

A massive headache which resolves when lying flat, is usually a feature of a CSF leak, but I didn’t have this until nearly two years after symptoms started. When I first raised my concerns that I had a CSF leak I was told my symptoms were Anxiety, and so I paid to see the specialist privately, who then transferred me back to the NHS for treatment. The incidence of CSF leaks is 1/20,000 which is more common (& so more likely) than Parkinson’s Disease for women under 60.

Hi @Dildon and other Young Onset people. There is a bunch of us YOPD people who used to meet on Zoom; for various reasons we got out of the habit but member @AnaElsa and I are trying to reboot it. We are having a YOPD Zoom on Thu 5 Jan at 8pm (UK time). Message me or @AnaElsa for the connection link. The idea is to link up, exchange introductions and ideas about keeping symptoms at bay and whatever else is on your mind. Hope to see you there!

Hi Pcyc thank you for your response & invitation. As I haven’t yet been diagnosed I wouldn’t feel comfortable crashing your group meeting but if & when I get a diagnosis I would love to join you all. Not sure if I’m being optimistic or I’m in denial. X

Hi Dildon
I have recently been diagnosed with PD after going to the doctors with a bent finger yes it really is a shock but the reason I am replying to you is this last few weeks I have had shoulder pain going into my next which I put down as frozen shoulder or I had done something and not noticed it never thought it could be anything to do with PD although I do get pains in my legs, have they told you that your shoulder is to do with PD. wish you well

Hi Peterb1951, I have had shoulder pain & stiffness for more than 3 yrs now. Steroid injections & physio haven’t really helped. The last time I saw the physio he recommended I see a neurologist. I think he saw my tremor, shoulder problems & lack of arm swing when walking & decided it needed further investigation. No one ever mentioned PD until I saw the neurologist. I finally have an apt for my Dat scan so hopefully I’m a bit closer to knowing what’s going on. Can I just ask if you have a tremor too? I do but it’s only when I’m doing something. It seems to stop when I’m at home chilling bu starts when I’m tired, stressed or emotional. This is another reason I’m not sure he is right. I hope you are doing ok ? Take care, Donna

Hi Peter I’ve not spoken on here before now. I have EOPD and my shoulder was looking back one of my earliest symptoms along with left sided tremor. My shoulder still plays up quite a bit. My legs also aren’t pleasant especially at night time ( I’ve always described them as more than an ache but less than a pain ) though my consultant told my off for using child birth as a pain score :see_no_evil: I have found that lush the bath bomb shop sell a cbd bath bomb and that does help ease my legs and I get a better nights sleep after using it. Maybe worth a try :blush:

Hi Dildon
Hope it turns out well for your Dat Scan yes I have had a tremor for years but I had always put that down to my middle finger bent inward as I say shock when I put everything together and they said I had PD but am getting lot more pains and aches in my legs and shoulder, the tremor is there all the time can not carry a a cup of tea (or glass of beer haha) in my right hand and like you it gets so bad when stressed or upset ,I am also getting really vivid dreams, are you getting other symptoms at all Good Luck

Hi Flora19
Its nice to see you on here I not on here to much but does help sometimes just to see what others are saying and to get things off your chest as I don’t tell family or friends to much what I am going through, I do agree think most of the time my is more of an ache than a pain but really don’t know where to put my arm and legs sometimes I suppose like most With PD good days bad days, you have to have something to compare the pain with, Glad you found something to ease your pain (nothing like a nice long soak ) but unfortunately I do not have a bath just a shower (OH Well), Do you sleep ok I have trouble sleeping and have very very vivid dreams
Take care and if it works for you keep doing it

Hi Peter yes vivid dreams are horrible. I did have them very frequently until my medication was increased, I still have very vivid dreams to the point it takes me a while to figure out they were a dream but not as much now thankfully. Sleep and me aren’t very good friends, getting my legs comfortable at night is a real issue they ache quite a bit and my feet hurt quite bad in the night too. The red tiger balm is quite helpful on your shoulder. It’s a little more expensive than others but definitely worth it. It heats up after a few minutes and takes the edge off. Knowing where to put arms and legs is errmm very technical sometimes isn’t it, I know where I’d like to put them some days haha

Hi Flora19
I will give the Red tiger Balm a go anything to ease the ache, I think problem is now every ache and pain I am putting it down to PD I went to see the PD nurse last week and she said don’t put it all down to PD I am 72 so ache and pains are going to come with PD or not, did mention upping my tablets but think I will leave that to last minuet as have never been one for taking tablets, Dreams, pains, aches, bit of memory probs, freezing on the spot sometime, not getting my words out sometimes, go job we can sill laugh (well sometimes ) take care

anyone know what I missed out or things to come I love to know so I am prepared

Hello Peterb195
Your last post did give me a wry smile as it highlighted just how different our approaches can be - your wanting to be prepared by knowing what may come your way and my own ‘I’ll cross that bridge when it happens’ lol. Which is a perfect example of something i have written endless times on tbe forum ie there is no right of wrong way to approach or manage Parkinson’s only the way that suits the individual. What we do have in common and i have seen this time and again, is that however bad things seem there is often at least a glimpse of humour shines through albeit not necessarily immediately apparent. If we can keep that at least some if not most of the time, Parkinson’s will never be the outright winner as far as I am concerned. I send my best wishes to all who have contributed to this thread and hope your current individual challenges won’t eclipse that glimpse of humour which can give you the strength to go on when it can seem too hard

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Thanks Tot
And how right you are we are all different, I read loads since i was diagnosed (which is only about about six months ago) and don’t get me wrong, it is a thing I will live with and hopefully keep my little sense of humor, well on good days anyway :slightly_smiling_face: , Its just that as I said before (may be too many times ) its the initial shock, now i got into my tablets hopefully soon hopefully i get my head around it and I will come to terms with it completely, Its my poor wife i feel sorry for having to listen to my oohs and arrrs every time I get up or bend down she said one day she put them to music :smile: anyway take care and thanks for the reply