In a state of shock

hi I’m Sarah. I’m 47 and diagnosed 4 weeks ago with early onset PD. I am still in a state of shock and very emotional. I was diagnosed eventually but started with a muscular skeletal consultant who scanned my painful shoulder, gave me physio but no improvement. (i’d had a bad shoulder and dexterity issues for many years before).Then he referred me to a neurologist privately, Dr Zoukous who within 2 mins after me describing my dexterity issue in my left hand and my arm not swinging properly when I walk, suspected left sided PD, after many weeks a DAT scan confirmed this. I’ve been started on Mirapexin (Last 3 weeks), then soon to also take Selegiline, plus Vit E and CO enzyme Q10. I’m exercising cardio everyday and lots of walking but mentally i can’t get my head around it; i.e. what caused it, why so young etc. Will I be able to lead a normal life? i have 3 children and a very busy senior job on a pharmaceutical site and my confidence has taken a nose dive as I am petrified about the future. Does anyone have any tips or advice to be positive about the future? Me and my partner just feel devastated at the moment, thankyou Sarah

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Hello Sarah take a deep breath so you’ve been diagnosed with pd what changes nothing go about your life as normal this is a slow progress disease i was diagnosed 2yrs ago i work ,i drive ,i ride a motorbike, i may have parkinsons but parkinsons doesn’t have me think positively talk does get easier

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Hello Sarah and welcome to our friendly forum. Here you’re bound to meet others willing to share their stories with you and show you that you’re not alone. Getting a diagnosis of Parkinson’s is never easy and can be particularly difficult when you’re younger and don’t know what this means for your future.

You may find it very useful to read this section of our website, especially the information about Young Onset Parkinson’s and the To Do list. You’re already ahead of the game with getting some exercise. Coming to terms with your fears may take a little longer, but we’re here for you. Don’t forget if you need someone to advise you or just simply listen, you can call our helpline at 0808 800 0303.

Let us know if you have any questions,
Janice
Forum Moderation Team

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Hi @SarahLou
Welcome to the forum.
I would like to say to you that it’s not the end of the world. Be positive and move forward. Yes it’s a fact that you have diagnosed with Parkinson’s disease. The worry is natural but don’t let that conquer you.
I am 43 years old and diagnosed 2 years ago. Like you it was a shock for me even though I knew it’s coming. But the diagnosis is not stopping me in my life or in my profession at the moment. I was a band 5 nurse in NHS and after 6 months of my diagnosis I took band 6 junior sister post and still continuing. I know getting a diagnosi of a chronic progressive neurological condition doesn’t have a complete cure is not easy to deal with. But thinking about it keep on worrying is not going to take you any where .

Parkinson’s affect each person differently. So finding your way to cope with this is very important. If you are looking through Parkinson’s UK Facebook page or the parkinson magazine you can see lots of inspirational stories.
You will hear from the other friendly forum members and their advice. Don’t stop nything what you are doing now. Enjoy your days with your lovely family.
Take care
Tinku

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Hi SarahLou
Glad you have found the forum, you will find lots of support and guidance on here. I can honestly and totally relate to the feelings, I called it my emotional rollercoaster, I am fairly new to all this, started meds August 2020. You are asking all of the same questions of yourself that I did,similar position, I kept a diary (advice from another member on the forum) symptoms, mood, diet,exercise, fatigue, side effects of meds, sleep or lack of it. For me it helped in two ways one, I could look back and see any patterns, what was a better day and what coping strategies worked (particulary with busy job), what did not work so well, how I can change a routine, what practical help around the house, it’s a starting point, doesn’t matter how you get there but you do, just doing it a different way. Secondly, I take it to appointments, with time being limited with consultant he can scan through and ask me questions rather than me ramble on and forget something (which I do). I also found the first steps programme on here amazing, I think it was only after this when asked the direct question, have you accepted your diagnosis that I did. Maybe call the helpline and see if this is still running, there is information and support tab on the website. Take care :smile:

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Hi Sarah

I see it as fate having served up a different future than I expected. It’s not the worst thing that has happened in my life.

My advice is to let it settle as new information, and concentrate on being happy on a day to day basis, perhaps until the New Year, and then gather together a self-care plan for the rest of the year.

I’m ten years older than you, but was very fit and took great care to eat healthily, avoid stress, and get enough sleep, so I need to overcome a feeling of “its not fair”.

I read a lot of research, and the current best plan seems to be to maintain physical fitness.

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Hello Sarah Lou
Everything other members of the forum have written is absolutely right but to my mind you’ve identified the main problem with many newly diagnosed people ie ‘I can’t get my head around it.’ As I have written elsewhere the brain is a powerful tool in your body and is expert at arguing opposing views. What happens time and again though, is that when you hit an obstacle such as you have now with your diagnosis the negative voice is usually the strongest and it is a very difficult thing to counter. You can end up feeling like your future is one very deep black hole from which there is no escape. Up to a point it is true. Parkinson’s is a chronic condition and at the moment there is no cure. What negative voice doesn’t tell you is the reality of living with Parkinson’s. I’m not going to insult your intelligence by suggesting that your diagnosis and mine and that of everyone else on the forum who lives with Parkinson’s makes for an easy life. It doesn’t. It can be challenging, tiring and frustrating, will keep throwing something new to cope with usually when you going along nicely and to be frank at times you will wish you can stop the world and get off. The other side of the coin is that it is perfectly possible to have a good life with Old Parkie in tow. For most people it is a very slow moving condition that gives you time to adjust. You have a lot of reasons to stay motivated and do what you can to stay well through diet and exercise. Almost everyone on the forum would have gone through what you are going through now and like us all, you will find a way to come out the other side. There are no right or wrong ways, just what suits you. The roller coaster of emotions you are currently feeling is entirely normal as is the questions you are asking. Unfortunately there are few clear cut answers because as you will have gathered from previous responses we may all have Parkinson’s but the impact is different for us all. You and your family need to give yourselves time to get used to the diagnosis but you don’t need to change anything about your life, plans, hopes or dreams right now. Your life hasn’t ended. You are still the person you were before Parkinson’s and you always will be. Your life has just taken a different path that’s all. I know that sounds glib but it’s not. You just need to find your feet and that can take time. I was five years older than you on diagnosis and next month will be my 12th anniversary. I live alone and manage very well. I am still enjoying my life and you won’t believe this but I am actually quite content with my lot and that’s because for me staying positive is key. I am Tot first and I happen to have Parkinson’s - it never gets top billing. Hang on in there and trust what people have written however hard it is to believe right now. You too will find your own path and you will be fine
Tot

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Hi Sarah, I’m also 47 and diagnosed by neurologist end of September, I’m currently on medication adjusting each week, been for a MRI, just got a letter today for a DATSCAN, If you would like to private message I would love to chat more

Similarly recently diagnosed at 54 - greatly encouraged by what I’ve read here and gathered from the website resources. Can certainly relate to the elements of shock, and information overload but knowing there is accessible support helps. Thank you.

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Hi Sarah. I was diagnosed at 50 and now, 14 years later, I still have days when I wonder if they got it wrong! The initial shock is inevitable but you will gradually come to terms with it, I had an attack of the glums quite frequently in the early years but now I never get depressed or worried by my PD. Yes, it’s a bummer taking 14 pills a day, and yes it’s a pain when I’m out walking 10 miles and have to sit down for five minutes because i start to go “off” slightly and when I’m trying to do something that requires dexterity and I can’t do it is annoying, but other than that I forget about it. I saw a friend I hadn’t seen for two years the other day and he admitted he’d been worried about seeing me in case I’d gone downhill in the meantime. He was shocked and pleasantly surprised to find me better than ever! My grandfather had a saying “this too shall pass” and it will. You will find that the initial terror (and it is terror of the unknown) will die down as you come to terms with your diagnosis, the “why me?” becomes “why not me?” and you realise that life goes on. It may be different but it goes on.

They call Parkinson’s the designer disease because it’s different for everyone. I’m very lucky. I have, to my mind, a very mild case but I’m a very positive person. Others may not think it mild. It is all down to your state of mind. Tell yourself that, yes, you have PD and yes, life’s a b*tch, but then remember it could be MND or terminal cancer then count your lucky stars it is “only” Parkinson’s.

It is very early days for you but I hope you take some solace from the fact that you are still you and you are still here. Be positive, and if you can’t then be positive instead!

Best wishes. Jane x

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Hi SarahLou. I think It is alaways a big shock to us all to be diagnosed, even when you suspect you have parkinson’s. I was diagnosed 4 years ago at 60, bilateral parkinsons stage 3, I had known Id got it for about 5 years and my wife certainly thought I had it. I think we all go through stages, disbelief, anger, depression and at some point you sort of accept it, if they can get your medication right you should be able to do most things. I had a tough time with meds finding the right combination, eventually settling on Madopar and selegiline, I have managed to reduce dosage to just 3 capsules a day down from 10. I was also advised to take vitamin D. I exercise as much as I can, sounds like you do too, it will make you feel good. I still drive OK, ride a motorbike,the DVLA will review my license every 3 years, I run, cycle, row, do boxing, I paint, draw, do poetry. There is a online organisation called Parkinsons art if your into that. Give yourself some time to get used to it, you will get your confidence back and you might find you actually get stronger mentally because you cope with this. There is a lot of research going on, I recently did a drug trial and met some lovely people who happen to have Parkinsons, I found them inspiring. We all take it on in different ways, I am sure you and your family will be strong. Billy Connolly said, If this is Parkinson’s you can tell him he can have it back ! If its any comfort I feel better now than I did 4 years ago, I am a retired heavyweight boxer, played a lot of rugby, my wife says I took too many blows to the head ! You are young with supportive family, I think you will get your head round it quicker than you think and look for ways to knock Mr Parkinson on his backside. Best wishes. Jack

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thankyou for your lovely message, very motivating

thankyou so much, this makes me feel hopeful

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Hi SarahLou. You are welcome.Its easy to say don’t worry, but its human nature we all do. Its easy to say it could be worse count your blessings it could have been cancer, my reply to that one is it could have been better, it could have been someone else ! That big question why me ? that is always there, there is no answer to that one.Just had some tests for motor neurone disease, thank god they dont think it is, now that would have been a bugger ! Four years down the road I now think I am lucky, I can live with it, its not so bad, makes me someone a bit different maybe a bit special, quite a few of my hero’s had or have Parkinson’s, you are now a member of a special club,wear the badge, you can still do what you did before, maybe you make some adjustments. I have a friend who is 84 and has had this for over thirty years, he thinks its a bit annoying sometimes when the tremor makes him spill his drink ! Good luck to you. Kind Regards Jack.

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Hi Sarahlou

I was diagnosed at 41 and I am now 51 , still working , driving and doing most things I’d always done before.

I know when you first get DX it’s hard but it does get better as the days go by .

Try to relax and let the meds do their stuff.
The consultant should get your balance right.

Stay off the internet!! apart from Parkinsons.org. There’s a hell of a lot of misinformation on there that will not help how you feel .

Cheers
Liam

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Hi @SarahLou , For what it’s worth, I always get people to ask their GP Surgery if there’s a Parkinsons Nurse in the area, if so then strike up a rappor with them, they are very helpful people. You’ve had a lot of people chip in with good sound advice on how to deal with the diagnosis, so now absorb and take the positive attitude advised by many. We’re all here on the same journey but down different paths and as is said so often, you’re never alone on this forum there’s always someone around to offer kind words and help. Take care, stay safe.

Les

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What great comments! I’ve not had my diagnosis confirmed but the neurologist told me a few days ago he’s pretty sure I have Parkinson’s , my meeting probably only lasted 5 -10 mins at the most , and I was certainly shell shocked and still am , the tears come in waves from nowhere . But after joining this forum today and reading through all the comments I feel slightly more hopeful/positive about my future. My Dilemma is the medication, do I take them or wait until I really need them

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First of all Sarah I would say to calm down - not easy I know. I was diagnosed 12 years ago and for the past 10 years have been on medication which has enabled me to lead a fairly normal life. Your consultant will probably tweek the meds as you go along - there is a great choice they can use.

Everyone, I have discovered is different and has different symptoms so I tend to avoid support groups. I would recommend Warrior classes if they are available in your area. The exercises seem simple but are effective.

Good luck
Cathie

Hi Tzb only you can decide when to take meds i waited a year before i took medication but unfortunately the meds dont touch me but were all different what suites 1 person doesn’t suite all

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My husband was diagnosed 28 years ago and we still go abroad 3 times a year. For my husband Selegiline is a must. He has taken it for 26 years and he has never suffered with the depression sometimes associated with PD. Make use of any specialist PD nurse. They are more knowledgeable because it is what they specialise in.

As for meds try Mucuna Pruriens, natural dopamine. It works. I buy on Ebay Uk called Pure Selva from a seller in Scarborough or North Yorkshire. Not expensive either. My husband takes a teaspoonful with his other meds. We were not told this til 10 years in that protein prevents the PD meds working effectively so therefore medicate 30 minutes before food and an hour after. My husband had DBS in 2005 and this has improved greatly since then with a new version called Boston Scientific. Also, a very exciting device invented in UK by Charco of Cambridge called CUE-1. Non invasive and not too expensive.

Another very helpful site is an international one called Health Unlocked. There are people from around the world on that forum. Most of them believe in a protocol involving B1, Thiamine. It is very informative. There is a new probiotic being trialled called Lactobaccilus Plantera, PS128, All the details are on there. There are numerous trials for PD going on all over the world so keep your chin up xx

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