I’ve recently been diagnosed. I’m sixty two years of age and I’ve had a flood of sympathy and concern from all my family and friends. They have all expressed their sadness at my diagnosis but they are all stunned by my reaction.
I am upbeat and relieved by the diagnosis and this surprises everyone until I explain the alternatives.
It could have been ALS, MSA or MS.
So, by comparison I think that I’ve got off lightly.
I’m not looking to diminish the seriousness of the condition or to demean those suffering from the disease but it could have been so much worse and I’m taking the positives from the situation.
This disease is manageable with medication and isn’t a death sentence so I can cope with the situation.
Tell me though, am I deluding myself or am I making sense?
I look forward to hearing from you all.
Hi @Timmygee and welcome to our friendly forum. I’m sure others will be along soon to chat to you and tell you their own stories.
What a great attitude you have. That’s always a real plus. You may find some interesting information on our website about a new diagnosis. As well, do call our helpline if you have questions or for support and advice on 0808 800 0303.
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@Timmygee Hi Tim,
No you are not deluding your self and you make perfect sense to me. I was dx in 2016 having originally gone to see my orthopaedic consultant about a hard lump on or near the left hand side of my spine. Reassuringly he told it was not a tumour but felt like muscle damage or that my spine had moved slightly, which I always new was a risk due to a previous spinal injury, whilst skiing in 1985. During the follow up consultation he noticed a few things that gave him concerns to send me to see a colleague in neurology.
By the time I had walked from the waiting room my neurologist had already noticed the symptoms and after a few test and questioning of my myself and my wife, gave a preliminary diagnoised of PD. This was 8 weeks later confirmed by a DAT scan. This is when at 54 mr parky as we affectionately call PD entered our lives. We were both happy that it was just mr parky and not as you say something more serious. Having just witnessed in the 2 years before hand my Father in law dying of motor neuron disease, MND or ALS as our American cousins call it.
mr parky and I always refer to it with a small p and not a capital P, why because though I have parkinsons it does not nor will it ever define me or stop me from trying to live a normal a life as possible. Yes it was a blow, yes it was traumatic to be told mr parky had arrived (more do to my parents than me), but also as the consultant said at the time “you will not die because of it”. He explained that many people live a full and active life post dx with the help of; Postive attitudes, exercise, sticking to your normal life style as much possible and taking medication as and when it becomes necessary. It is not all a bed of roses as I am sure you know or suspect, however it is not all too and gloom either. But will not dwell on that today. @JaniceP has already told you how to contact PUK helpline and as you have found the forum hopefully you have also found the main website www.parkinsons.org.uk
The website has lots of useful resources but don’t read ahead of where you are as that is not necessary for now.
Yes overtime the number of meds have increased, I have had to make some changes to my life style such as I no longer ski, white water canoe, rick climb or play rugby. However I still remain active as I can with various sports, hobbies and past times. Some new and some of the older ones like more sedate and gentler river canoeing. We still or rather did until the pandemic travel all over the world and enjoy lots of family holidays.
Laughter can be the best medicine, along with a positive mental attitude, continuing to remain active or if necessary become more active by finding a new hobby or pastime, a balanced diet, medication as necessary and required. Also making me time or our time more important to make lots of new memories and friends as you travel along the often bumpy road of life with mr parky in tow. Wishing you well in your journey of discovery and pop back now and again to the forum which is an excellent sounding board and also where you will find people who tell it as it is and give practical tips and coping mechanisms. All the best John
Hello and welcome to the forum and Parkinson’s club. I happen to agree with jps1926 as a positive mindset is my way too and it has served me well for over a decade, but you have posed an interesting question. Everyone finds their own way to live with Parkinson’s and there is no right or wrong way, only your way.
Some do assume that positivity amounts to denial, it doesn’t. It’s about taking on board and accepting facts I can’t change but finding ways to accommodate changes to suit my lifestyle, to let me be me for as long as I can. It’s not everyone’s way some do well regarding it as a battle, have a need to fight all the way, some will hunt endlessly for the latest ‘cure’ and so on.
In the same way that I do not consider I am in a battle with Mr Parky nor do I use the other word always bandied about when speaking of any chronic or serious condition (and which the media use all the time) and that is suffers with. I don’t suffer with Parkinson’s, I simply have it, live with it. Often it is a superfluous word that can happily be left out. I can say I am suffering with it if I so choose, it is not in my opinion, for anybody else to say that of me.
Living with Parkinson’s does bring challenges, it is not always easy and positivity or not, I have my moments but on balance it works for me. I trust your approach will do the same for you.
Welcome to the forum. I am glad to read that you have approaching your diagnosis with a positive attitude. You are right , if the diagnosis is MS OR MND, the life is different. But with PD we can treat the disease with medications, adjust the diet and follow good exercise regime will help us to move forward. Ofcourse , PD affects each person differently. I believe positivity plays a good role when you have PD.
I do agree with you, I don’t like the sympathetic approach from others. I was diagnosed when I was 41 yrs old ( nearly 2 yrs ago). I am able to continue how I was before, so far. I did cry when I was told it’s PD ( even though I diagnosed myself before going to the neurologist). But I am going with positivity. I know life will change eventually but until then go with positivity and determination , that’s my policy. If you’re always thinking about this , you won’t be able to move forward. So stop over thinking and fill your mind with positive thoughts and be with people who can give you positive energy. Don’t let the disease to take you, instead you are taking over it. I hope you have a supportive family and friends .
I finds this forum is very supportive and informative. Hope you will find it in the same way.
Hi you should fare well with such a great attitude and with well prescribed medication at the right time you will be able to live well with the disease for at least another ten years.
This has been my experience.
However as I move into the late stage, every hour, every minute is a challenge and relentless.
It is essential that a way of stopping the disease and reversing it is found as soon as possible.
I am desperate for this to happen so that I am no longer a burden to my family and can once again find myself of value to others
If you are deluding yourself then a lot of us are. I was diagnosed in March after a DaTScan but I am not on medication yet. I intend to put this off as long as possible but even if I wanted to be on it the vagaries of the NHS mean that my first appointment with a neurologist will not be until August.
On first getting the diagnosis I was a bit shocked but I soon picked myself up. I try to do daily exercise. I am sure the exercise helps but even if it doesn’t help directly at least I feel I am taking positive action. I also try in every way to live my life as it was before and only concede to P when I have to. For example even though my main symptom is a right side tremor I will still use my right hand for everything as before except holding drinks.
Mentally I am very absent minded - I don’t know whether this is P or just old age (69) - but even so I try to keep my mind active. You may not be able to stop your body or mind deteriorating but at least you can slow it down a bit.
Anyway be positive and good luck.
Thanks so much for all your kind words. As some of you have put it, I’ve joined a club. It’s a club with rules like any other club and I’m honoured to be a member.
I’m in esteemed company. Do you think that Parky singles out the intelligent and creative? If so then I’ve slipped in through the back door.
In the 70’s and 80’s Ray Kennedy played for Liverpool whilst he had Parky’s. Given that it’s unlawful to discriminate on the basis of age or disability then I’m digging out my boots and heading for Anfield.
I think that this forum is an incredible resource and that you’re a group of incredible people.
Thanks for your support.
I guarantee not to be a stranger.
May I just say how nice it is to read such positivity about living with Mr Parky. We all know that as things stand the challenges will increase as time goes on but I fully intend to keep positive in any and every way I can I sincerely hope you will all continue to do so too. My best wishes to you all and thank you.
Yay for all the positivity! I wasn’t exactly happy when diagnosed but my mind was put at rest when at least I had an explanation for all the odd symptoms I was experiencing. And I agree there are worse things I could have. My symptoms are currently mild and I view my PD simply as an inconvenience…long may that continue for all of us.
Great attitude to have mate, positivity is so important as there will no doubt be bad days where you need to stay strong. The only thing I will say is that don’t hold your breath on thinking that the medication is a silver bullet and answer to the symptoms. Nearly 4 years after diagnosis I am still trying to find the right combination of meds. Nothing has ever worked effectively. Daily exercise and a good diet is the key.