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.
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”.
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
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!!
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].
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’
@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.
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.
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!!
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
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
Hello Amelia, I just wanted to say please don’t be too hard on yourself about what you think and feel about what’s happening to you. Maybe you could be seen as being a bit in denial, maybe some would say your feelings are irrational, maybe you are ashamed to admit to having PD, all of that may even be true. Truth is real or not it is the way you are reacting, it is your way and that’s ok. I suspect and I would stress it is only my personal opinion, there’s an element of your brain going into protective mode if you like only letting you think up to a point to prevent your being overwhelmed. It is a complicated and complex condition which delights in taking every opportunity to trip you up, the only consistency about it it seems to me is its inconsistency. You will find you will become used to this and develop strategies of one sort or another but whatever you think and feel is legitimate there are no could and should. It is not always easy, to an extent you have to grieve for a life gone and replaced by one on shifting sand foundations. Not easy but not impossible. Seems to me you are working through things as best you can. That’s all you or any of us can do. Your thinking, feelings or whatever will evolve over time at your pace, I think that is happening to you and ì think you will be fine. I wish you well.
Hi everyone,
I got Parkinson’s in the second half of 2016 but was not diagnosed properly until halfway thru 2017 I live in Houston where there is an awesome medical center and I go to a “motion disorder specialist” now. She put me on Neupro patches and Sinemet and I am doing well at the moment. By the way, the reason I joined your forum is because I was randomly searching thru PD forums and noticed that someone was recommending your forum to someone else with PD because yours is “very active and easy to use”, so I decided to join. Hopefully you don’t mind having a Texan on here . I am 68 years old and have been married 46 years. My wife and I have 2 grown children who provided us with 7 grandhildren. I retired from being a petroleum engineer at the end of last year.
Although I am new to PD I hope to be able to maybe provide someone with a helpful comment or two as well as getting answers to my questions about this nasty condition.
Al S
A warm welcome to the forum!
We’re glad to hear that you’re doing well at the moment and hope the forum provides you with more insight and a friendly community.
@Al_S Every one from all walks of life and country are most welcome on this Forum, we have got people from Australia who contribute so you will never be short of someone to talk to about this subject. As @Moderators2 Elan has pointed out, we are a friendly and most importantly, helpful bunch of people on here and will try to answer as many of your questions as we can, if not, then the Moderators step in and give you pointers as to where you may find the answers, hope this helps and that you continue to enjoy the Forum.
Amelia. I can only say how sorrry I am. I guess from your use of the term staff room you too are a teacher.Angry is norml, and in my case long lasting, PD has been resonsible for the breakdaown in relationships, an inability to work, early retirement…but it is what it is.
