Sharing the love


#1

Today I met with Jayne Maitlin …I joined this site a couple of days after my diagnosis 20.01.18 Jayne was the 1st person to reply to me her post helped me so much even though she had only been diagnosed exactly 4 weeks before me
Jayne did everything she could to help me…we met today, cried together, hugged eachother, laughed at our stories “our journey so far” our trips and fallls. we planned our next meeting and I can’t wait to do our journey as friends Nordic walking and Boxing …it’s great to meet new people through the forum people who you can laugh with …xx ( follow my instagram page Chantellsjourney)


#2

It certainly helps talking to someone in the same boat. Good for you meeting up.


#3

Aww it’s lovely to hear you and Jayne met up. Sounds like you got along really well and it’s just brilliant how this site started this blossoming new friendship :blush:


#4

Awww that’s lovely Chantell and I’m so glad I helped you just after you were diagnosed. I know how hard and frightening those first few days were for me…

Today was lovely to catch up, compare symptoms and coping strategies with someone who is on the same page. Someone who has the same positive outlook and sense of humour and wants to explore everything possible that will slow the progression…
We might throw in a few nights out and spa days along the way :clinking_glasses::two_hearts:


#5

How lovely that you both managed to meet up. I was diagnosed on the 27th November last year aged 48. This is my first post as I’m more of a lurker than a poster but I do enjoy reading both yours and Jayne’s posts.


#6

Hi Nikoli

It was great that Chantell and I could meet up as we’re not too far away from each other - we met half way at a tea room off the M62!

So you’re really new to all this too if you were only diagnosed in November… how are you getting on? There’s nothing wrong with being a lurker and just joining in every now and again… It’s good to know that you enjoy our posts though, I’m sure there’ll be lots more!!

As you’ve no doubt picked up on we’re both really focused on the exercise side of things and will keep you posted on progress… I’m no athlete but I’m determined to do as much as I can and hope it gets easier🤞

Jayne x


#7

Hi Jayne … Thank you for your reply. I look forward to reading more about your adventures with the exercise regimen. I know that I too need to do more. In answer to your how am I getting on ? Not so good to be honest, I’m still searching for my inner positive attitude but so far I’ve had trouble locating it :grinning: at present I am very stressed over having to have another MRI head scan. My first one came back with no significant abnormalities however there was one small bright spot that showed, so my consultant wants to do another test with contrast. He has tried to reassure me that he thinks this is harmless and most likely where the scanner rays have bounced off or that it’s just part of the general make up of my Brain, but the worry is sending me quite barmy :exploding_head:that and the stress of waiting for the DVLA to agree I’m still ok to drive. Again my consultant says I have no need to worry on that score, but I do as I’m a single parent and also self employed. My apologies for the long rant, bet you wished you’d never asked :joy::joy: I’m off to look for my inner positivity now :face_with_monocle:.
Kind regards
Nicola x


#8

Hi Nicola, I’m just going walking but will message you when I get back xx


#9

Enjoy your walk Jayne … I’m off out too… walk my pooch :dog2:xx


#10

Hi Nicola

How was your walk with the dog? Hope the weather’s better than it is in Leeds today.

I did my Nordic walking and enjoyed it even though I need loads of practice! My coordination wasn’t great as my left arm doesn’t do anything so I definitely need to keep going to master the technique!! :walking_woman::walking_woman:

Have you been diagnosed with PD or in limbo until you have another scan? Do you take medication? For me, the waiting was the worst bit and although it wasn’t the news I wanted, I now know and in some ways it’s a relief.

I’m waiting to hear back from DVLA too but I think everything will be ok judging by the questions they asked and that I answered no to most other than being diagnosed and taking low dosage meds. I also rang my car insurance and they werent concerned, just had next year’s quote and it’s gone down…that doesn’t happen often does it?

Hope you get a date soon for your scan… but if you’re really worried and need someone to talk to give the helpline a call, they are brilliant…

Jayne x


#11

Evening Jayne

I didn’t make it out with the dog as the heavens opened and it was blowing a gale here in Redcar. So I took to the kitchen instead and baked a pie to keep myself busy. Glad to hear you enjoyed your walking, are you part of a group or doing it alone?
I received my confirmed diagnosis on the 27/11/18 after a 10 minute consultation, I walked in with my main symptoms being stiff fingers and toes on my left side. The scan was just to rule out any tumors that could have been causing my symptoms. Previous to that I had been going to my doctor’s quite often complaining of hot flushes, various aches and pains and an internal fluttering, all of which I was told was menopause. Then I started with frozen shoulder, which I blamed myself for as I stopped using my arm because of tennis elbow. My doctor even gave me a stern talking to, stressing that I did not have Parkinson’s, motor neurone disease or any other illness. In the end it was the Muskular Skeletal lady who was treating my shoulder that wrote to my doctor and suggested a neurology referral. I started on rasagiline 1mg once a day nearly 2 weeks ago, my consultant said although there was no rush to start medication he personally believes the sooner the better.
I received my scan date this morning for the 1st of March. Not quite the post I would have liked for valentine’s Day lol :heart_eyes:
Nicola xx


#12

Hi Nicola

You probably did the right thing staying at home as it was very wet and windy.

I found the walking really hard as having to think about swinging my arm and throwing in a couple of poles was a bit confusing and I’m easily confused at the best of times!! I went with a group from Wakefield council called walking for health. They do the Nordic walking 3 times a week and I’m definitely going to keep going. It’s free which is also a bonus :yum:

I think I’m the only person who’s not taking rasagline, going to ask consultant when I see him in a few weeks why some are prescribed it and others not…

I’ve got a free session with a personal trainer today having spoken to her at length on the phone about what I think I need. I’m a bit apprehensive about it but I seem to feel like that about everything these days, I’ll be fine once I get there and she’s making me do sit ups and Burpees!!

Not the best valentine’s gift but at least you now have a date and you know you don’t have too long to wait.

What are you up to today, do you work?

Jayne xx


#13

Hi Jayne
Sounds like you definitely have your days filled with all the various exercise routines, and great that the walking is free, im sure you’ll master the art of the poles soon, like you I’m easily confused too, I tried cluberxise last year and just ended up looking like a baby giraffe learning to walk for the fist time😂arms and legs everywhere and totally out of time to the tunes. Needless to say I never went back. I looked in to the Nordic walking and there is a group near me but it’s £6 a time. So I’m thinking of getting on my bike instead and swimming plus walking the dog. Sounds great in theory, just need to push myself.

Im not sure about the rasagiline as yet, early days, but I feel more jittery since taking it ?

I do work, I’m self employed as a domestic cleaner, I have a good client base and on my bad days when I really can’t get my head around work, I tell myself … well at least it’s exercise and keeping me going.

I remember reading one of your posts that you too work. How is that going for you?

Nicola xx


#14

I’ve typed a reply but it won’t let me post, says it’s too similar to my last post… I’ll message it to you instead


#15

I meant to say check with your local council or GP there might be an exercise referral scheme and i think they’re usually free… xx


#16

Thank you Jayne I’ll make enquiries with my doctor xx