Hi Im new to the forum

Hello to all you brave P.D. sufferers, friends, family and carers. I was diagnosed with P.D. 6 months ago but have probably had it for longer. I was devastated on hearing this news. my symptoms started off as hand tremors and because I felt ashamed and embarrassed I used to eat my lunch away from the staff room (Irrational I know!). on my first visit to neurology I was given a leaflet plus a prescription for Sinemet and little else. Thankfully on my 2nd visit the neurologist helped me put things into perspective I wish I had seen him on my first visit. As my medications have been adjusted the tremor is well controlled at the moment.
I had my first visit from Parkinsons nurse last month. I appreciate that there are so many people much worse off than myself but her advice to " take on a less qualified position" in the workplace rather condescending. and people with Parkinsons cant swim (previously my favourite exercise) to use a float and stating one of her patients wears a t-shirt advertising the fact they have parkinsons, I can understand that some people may do this if they want to inform people incase they need assistance, but would people wear a t-shirt saying I have Epilepsy or I have had a stroke? As you can probably tell I am going through an “angry phase” at the moment and am cross with the world but I thought I would touch base and vent my feelings to compare notes and any advice others may have. Thank you for reading.

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Hi @Amelia37. Welcome to the forum. I was diagnosed 2 years ago and my symptoms are quite mild.

That does sound strange advice about swimming. Nobody has ever told me not to swim and I’ve had no problems. In fact, if you enjoy it as exercise, I would have thought it would be good to do more rather than less. I would also be unimpressed at the suggestion to wear anything saying I have Parkinson’s until my symptoms get bad enough to need people to know.

Best of luck anyway and remember that it doesn’t mean that you have to rush into any decisions or changes but take your time to adjust.

All the best

Clare

Hello there, what you will quickly discover as it is written time and again is PD is very individual it therefore follows in my opinion, that your response to it would also be individual. I too would be somewhat annoyed if told things as you were. The main decision I made early on was to always remember this is happening to me not my medical team, family, friends, work colleagues or anyone else although equally acknowledging it affects everyone to some degree. So medically I will listen to and generally go with meds since this is done in a very partnership way anyway. Over and above that although it took some educating to stop people ‘helping’ when it was not needed that is generally accepted now. I have chosen to be open about my diagnosis because it saves a lot of misunderstanding but not by wearing t shirts and the like but simply telling folk. How and when depends on circumstances but includes strangers. For eg recently I was in a small very full souvenir shop and my feet froze as I was going through a doorway with people following behind with no room to get round me. I simply said my Parkinson’s doesn’t like this doorway my feet will get going shortly when I’ll probably go off like a bullet it’s usually only a few minutes, there was generally a don’t worry response and people started to ask questions but I had to say would you mind talking amongst yourselves if I don’t concentrate we could be here all night. My friend came back and there was quite a conversation going when suddenly I was off to spontaneous applause and no bad feelings. My attitude has always been to stay positive and try and keep well and to do so for as long as I can. I have done lots of things to support this not appropriate to go into here but all I can tell you is almost 10 years on I am still doing ok and still doing it my way. Which is a very long winded way of saying, get information you need to make good decisions and then follow what your heart or gut depending on your point of view tells you and you’ll not go far wrong. This is not to say you don’t need to be realistic or foolhardy but if you are clear about how you want to approach this thing that is happening to you whether you see it as a battle or my preference, accept what it is but challenge its effects then you will be true to yourself and that gives the opportunity to make sure as far as you can that you retain control of your life. I am not sure how much that makes sense to you but I hope you get the gist. Feel free to ask anything you like. I hope you find a way to do it your way but taking others with you, it has served me well. I wish you well, the early days are a bit of a rollercoaster ride!

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Hi Amelia, I was diagnosed about 10 years ago. I still am nervous about eating in public and hate being starred at when shaking. Friends and family are understanding but it does make you think about where to eat/ timing it so I am under control/ type of food.

I couldn’t go through the wearing of a t-shirt. Its ok to go through the angry phase. I cant remember the guys name he wouldn’t give in to PD and had it tattooed on his arm
" I may have Parkinsons, but Parkinsons doesn’t have me"

Not suggesting you do the same but don’t let it beat you. v

Hi Amelia,

I was diagnosed in June this year and was told to do as much physical exercise as possible, including swimming but have to say this is quite difficult when only one arm is working properly!
I do Hydo-rider now, basically spinning in the water. It is great as the Water reduces the pressure on your joints. I also use the gym, again hard when your right arm refuses to join in.
As for the T-shirt…I have no words.
I totally relate to the embarrassment, like you I avoided the staff room on a Friday briefing. I could see staff looking but how could they not? I am now comfortable with this as are they. Socially eating out is still a bit of a struggle but if my husband spots me struggling, he takes my plate and cuts my food up without making a big thing of it.
I am still teaching although I have reduced my hours and you know the children keep me going. Today I met a little boy new to the school who I had briefly met the previous week.
After saying hello and introducing myself he said’ Yes I remember you, your the one who shakes. I have ASD and I have a twitch" Put it all into perspective.
I have found this site so useful and comforting, who knows better than those with PD? Tot gave me some brilliant, much needed support.

Take Care Amelia
Annie

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Hi Amelia,
I was diagnosed 12 months ago and had the tremor for 12 months before that.
I knew something was wrong but had blamed it on side effects of drugs I am on for other conditions.
When the neurologist gave her verdict, I was not surprised, just a bit numb.
She pointed me in the direction of some information about PD and told me I had plenty of time to absorb the news. Things happen relatively slowly.

I have done a lot of reading and attend the local PD group. 12 moths on, I am definitely more at peace with the condition and while not excited about the future with PD, I no longer worry about it.

Most people I tell about my PD reply that they know someone else with PD so there is not the need to explain.
At a local coffee shop, the waiter asked if I wanted a tray to carry the drinks. She now knows that I can manage take-away cups OK.

I like it when we can joke about it. If I see a bottle that has “shake well before opening” I will always offer!

There are a few acquaintances who have written me off but I wouldn’t class them as friends anyway.

I do carry a PD card in my wallet but have never needed to bring it out.

It is spring here in Australia so I am about to start on some house renovations. I know I can use a hammer but not sure about holding the nails steady. A few bruised fingers coming up.

All the best,
Jim

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Hi, Clare,

I was so excited that people replied to my post so quickly, I find with swimming that I have more strength in my legs than my arms so I tend to "nosedive, which tended to scare me, there is no lifegurard where I used to go and years ago when I tried aquarobics and used a float I used to go backwards! thank you for your support have a great day

Hi Tot,
thank you for your good advice, I don’t freeze at present just very stiff and admire your strength and good humour. I find it scary when trying to cross a busy main road after getting off bus (unfortunately no crossings anywhere) especially when its dark - as it usually is when I finish work (2 buses and 2-3 hrs journey home after work). Thank you for replying and your good wishes,
Hope you have a great day.

Hi, Vaughan, thank you for your reply. Its sad the affect P.D. has on peoples confidence. I also find having to take regular meds and not eat for 30min afterwards (Sinemet) has an impact as working in a medical environment I am not always able to choose what time I have my breaks. Only my very close family and children know about my diagnosis I don’t feel ready to tell anyone else yet. thank you again for your reply. hope you have a great day.

Hi Annie,
Thank you for your reply, you have me intrigued - what is Hydro-rider? I used to go to aquarobics years ago and when I used a float used to make me swim backwards. The last time I tried swimming because I have less strength in my arms than in my legs I used to “nosedive” into the water and it frightened me.
When my husband and I go only holidays my best times were boat trips, jumping into the sea and swimming in the ocean, alas I cannot do this anymore, also he likes walking and as my legs are so stiff I cannot keep up with him. Sorry I don’t mean to sound full of self-pity just sad and frustrated. My husband and children are very understanding but I still lose my temper a lot at home - bottle it up at work as I haven’t told anyone there yet, have even looked after a couple of people with P.D. who have more severe issues so it does put things into perspective - I still miss my swimming tho! hope you hae a great day

Hi Jim,
greetings from UK. I too used to like diy - favorite was hanging wallpaper and upcycling. when first diagnosed I did a lot of reading and research but found it al doom and gloom - used wrong websites I think. Now that I am on meds that control my tremor I find that my P.D. isn’t on my mind 24/7. its only being so stiff when walking and not feeling “safe” to swim anymore. Apart from close family I haven’t told anyone else about my P.D. yet as still a sensitive topic for me. hope the house reno’s go well! have a great day. by the way haven’t heard of a “parkinsons card”.

Hi Amelia,

Hydro rider is bikes similar to those used in spinning but in the water!
The bikes have no gears and are static in the water, just peddle along to music ,watching and copying the instructor who is on a static bike. The water makes you feel like you are doing nothing as it releases the pressure on your joints. I also loved Aquarobics again because you can do so much more in the water. I may go back but not the deep end, I may never come back up!
And… you do not sound full of self pity, you have every right to feel sad and fustrated. I am sure we have all felt that way at times.
Are you a Nurse? You mention looking after people with PD?
My daughter is a nurse and doesn’t give me an inch!!
Take care

Annie

Hi Annie,

just got back from collecting my son from work and am about to research into Hydro rider in my area. yes I am a nurse only doing agency part time - but in a hospital setting. The ward I work on doesn’t specialize in P.D. just have had the pleasure of meeting a few. Just aswell we might get muddled with who is the nurse and who is the patient!!
I just want to try something to loosen up my joints as my legs feel so stiff, I worry about crossing busy main road at night when I finish work - no crossings available- after my long bus ride home. Hopefully I will find something that fits in with me - at least my meds have halted my tremor for now so I can shave y legs for water activities without cutting myself too much.
bye for now
p.s. re: your daughter Im a bit like that with my patients too!!

Hi @Amelia37, :wave:

A warm welcome to the forum. :slightly_smiling_face:

It’s great to see that you’ve received such great advice from the community. I just wanted to chime in to let you know that we have a lot of helpful advice, information and tips for newly diagnosed people with Parkinson’s. There’s an introductory guide which contains information about symptoms, treatments and living with Parkinson’s. You can find this section here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.

We also have a team of supportive and knowledgeable advisers via our free and confidential helpline on 0808 800 0303 or email us [email protected].

I hope you find this information helpful.

Best wishes,
Reah
Forum Community Manager

In the UK it’s called “Parkinson’s UK alert card” and can be ordered from Parkinson’s UK.
https://www.parkinsons.org.uk/information-and-support/ordering-our-resources

Handy if you end up incapacitated for any reason. If I get run over by a bus (more likely a tractor here), I would like the ambos to know that my tremor is ‘normal’

Jim

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@Amelia37 , Hi and welcome. What advice I always give to people such as yourself is to carry on with your life as normally as possible, don’t change a thing. If you enjoy swimming, then keep on doing it and as for wearing a Parkinsons t-shirt, I don’t think so, why would you want to draw attention to yourself ? Be positive in your attitude and do the best you can every day. In time, your body will tell you when it is time to make adjustments. Live for the moment and don’t allow yourself to get depressed by it, in fact I have always made a joke of it and laugh at it and make people around me laugh at it, even allowing them to have a little fun with me. Don’t be afraid to tell those closest to you about your condition, they will understand eventually. Anything else you want to know about Parkinsons just ask on here, we are all in the same boat but with varying differences. Most important of all, we are your friends and are always here to listen and offer any useful advice. Take good care of yourself and remember, you’re not alone.

Les

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Reading this advice - and it all came flooding back about my own diagnosis when I was in my 40’s. I’m 60 now.

I had been to see the neurologist and was still reeling. I knew nothing about PD (no family history) and my first question was about whether I’d die. It sounds stupid now, but his neurological expertise didn’t transcend into information and patient support, and I left his care that day absolutely none the wiser.

My GP sat me down and he was so lovely. His starter for ten was that he was no PD expert and that his knowledge was based on the two patients with PD on his books who were under 50. That was me and one other! A bit of a shaky start I thought.

But…He said as far as he could see, positive thinking made the best route to coping with anything in life - but even then, things would be tough. He went on to describe (generally) the difference he has seen with mental attitude to long term condition management and simply said I may still get depressed but which lens I chose to look through was up to me.

I can honestly say I’ve carried his words with me every day - including those days when I’m sad, angry or feeling sorry for myself. I feel it’s important to get those feelings surfaced sometimes - it’s not about walking around with a painted grin on.

I know too that PD is personal to everyone and that everyone is different but just wanted to share what helped me in my darkest moments. Things have been tough over the past decade or so, I often have to give myself a good talking to and my family are an incredible support - but despite the many, many challenges I’ve really come to believe in his words. I can’t think myself better, but I can think myself happier.

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Hello, I think I would liked that GP whose view ì share wholeheartedly. I also love your last sentence which, if you don’t mind, I might well repeat in posts on the forum. My own ‘go to’ saying is I have Parkinson’s, it doesn’t have me. Here’s to the power of positive thinking!!

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Hi Amelia37

I was diagnosed 2 years ago but I’ve hade symptoms at least a year before which were disregarded by my GP. I had to seek private diagnosis. But enough about me. I was chocked to hear that you’ve been advised to step accept a lower position in your employment. I am an accountant and auditor as well as a manager with many responsibilities and I haven’t changed any of these since diagnosis. In fact I feel that this position helps me cope with my disease. I also swim with no problem whatsoever. Carry on being positive and lister to your instinct.
Thank you
celeron1

Hi Celeron,

Thank you for your words of support, I am doing my best to stay positive. Initially because of my hand tremor I was unable to carry out some of the more precise movements needed at work so I had to take a paycut in my hourly rate which is fair enough as accuracy and safety for my patients comes first. I still have the irrational feelings of being ashamed of my P.D., especially as my medication at present is keeping my tremor under control I suppose I am still a little bit in denial!
My lovely youngest son has just bought me some resistance bands and weights to try and build up some strength in my hands . Initially thought my overall light headedness and overall body weakness was the side effect of my meds but is probably my P.D.
Thank you again for your words of encouragement
Amelia