I’ve recently been diagnosed with parkinsons after a DaTscan and somewhat of a long trip of seeing physiotherapists, osteopaths and finally a neurologist.
I’m currently waiting on my neurologist prescribing my medication so I am keen to see what results they bring.
I’m 50,fairly healthy and active but this has sideswiped me a little. No mention of PD in my family so wasn’t expecting it.
Looking back over the years I’ve always had tremors but my GP diagnosed these as essential tremors.
only recently have I noticed tightness in my left side and slowing down of my left arm swing whilst walking.
So I may have had PD for ages and only now has this progressed.
Looking forward…
First things first is to get started on my medication and then I can see how this will all impact my life.
I want to get running again and do a marathon, so if the meds help me I will be happy.
Not sure how this is going to affect my mobility, driving, working etc. but hopefully that’s decades away. That actually scares me a little but I need to stay focused on today, get my meds underway and see what the day brings.
BTW my partner is really supportive. She has done lots of reaching out on social media and found similar stories to mine so I don’t feel so alone in my symptoms. She is far more likely to talk about these things than I am!
Hi Darren,
Welcome to our lovely forum community. You’re sure to hear from our members soon, a great group of PWP and carers with a wealth of wisdom to share. Please also make use of our free and confidential helpline, at 0808 800 0303. Our friendly and highly knowledgeable advisers can assist with everything from medication questions to finding local activities, to just listening when you need to vent. You may want to also peruse our website, a wonderful resource for news, events, and archived forum discussions. This intro section for the newly diagnosed is full of valuable information, so you may want to have a look for a start.
Best to you and your partner, and warmest welcome to the community.
Jason
Moderation Team
Hello Dhobbs and welcome to the forum
Just thought I would stop by to say hello. Instinct tells me that now is not the time to write too much but I wanted to say it’s perfectly normal to feel sideswiped as you put it by your diagnosis and it does take a bit of getting used to. The fact you’re looking ahead is a good sign because you are seeing a future for yourself even if not sure how things will pan out. You may choose to read a few of the posts in this category, I think you will quickly get a feel for some common themes that are given in response to those who are newly diagnosed. I am fast approaching the 13th anniversary of my own diagnosis, still standing, still positive and crucially, still enjoying life; not always a bundle of laughs I grant you but that old adage holds true even with Parkinson’s - life is what you make it.
Stop by whenever you need.
Best wishes
Tot
Thanks for the kind words.
I have read a lot of about PD and it’s still early days for me. I’ve heard some people’s symptoms don’t progress that much over the years so fingers crossed. In just waiting to get the medication started and then see how that impacts me, don’t want to make rash decisions yet.
Seems to focus your mind on living life for the moment now rather than put things off for another time.
Hi @Dhobbs Darren, I’m sure this is a “club” you didn’t particularly want to join, but welcome! Sounds like you’ve got the right idea. I was diagnosed at 49 in 2019. @Tot is right with their thoughts (they normally are) but I would add:
Exercise exercise exercise. We are told it keeps symptoms from getting worse. And that is largely true for me. I’m still on a low dose of medication. For me that’s cycling, badminton and running.
Consider the First Steps programme, I found it useful although I did it rather late; better to do it soon after diagnosis.
Then consider doing the Fighting Fit weekend, I did this a couple of months ago, it is ideal for people of working age and really opened my eyes to the level of exercise we should be aiming for. https://fighting-fit.org.uk/
I go for quite a few days without even giving my PD a thought - it’s just a part of who I am, not the whole of me. Long may that be the case for you too.
Hi @Dhobbs(Darren), Welcome to our World. If you do as @Tot suggests, read through the Introductions section of this forum you will see the responses given, there’s no need to look anywhere else. The one thing I tell new members is to not change anything about their normal routine, if you want to run a marathon, do it. With Mobility you will know when to make adjustments to your routines, with your partner on board she can come on here & ask the questions that perhaps you feel unsure about but nothing is off limits.
On Driving, my wife is my barometer on this, if she didn’t feel safe beside me she would say, until that day happens I keep on renewing my licence every three years. On the medication subject the first one you’re given may not necessarily work for you, in which case you get straight back on to your Neurologists Secretary. I have taken Madopar for tremor & this works for me. Check with your GP Surgery to find out about your local Parkinsons Nurse, you may even get an appointment with them to get registered on their books, a useful person to have contact with if you should have any problems. I won’t ramble on but just remember we’re always here if you need a sounding board, we do listen & if we can, someone will give you a response. Take care & stay safe.
@Pcyc some good stuff there thanks.
I definitely want to keep active and that seems like the thing to do. @cruisecontroller i have just sent off my letter to the dvla so await their response, maybe change to an automatic. Thanks for the tip about the local parkinsons nurse, I will inquire.
Still not got my meds yet so can’t make any decisions yet.
Oh yes, not the club I wanted to join but need to deal with it regardless. There are people worse off than me so I just need to get on with it (no other option really), plus you’ve all welcomed me massively
Blimey @Duneman that is a long time to wait and potentially worry. Hopefully their response to you was good news.
When we phoned them up they did say i should take the advice of my doctor and if he thinks I’m still safe to drive that’s fine with them
The DVLA response was “we have completed our medical enquiries” and I needed to hand back my full license and get a medical review licence valid for 3 years.
And then words to the effect that if I deteriorate or are advised by my doctors not to drive in those 3 years then notify the DVLA again
Sounds like you’ve got the right idea. I was diagnosed at 49 in 2019. 