I haven't posted on here for quite a while but popped on to read messages from time to time. It has been so reassuring to see familiar faces and see the support you are still giving to both old hands and newbies. Thank you for that. Reading out some of your posts to John over the years has been helpful and encouraging.
To recap for those who might remember us, John had a massive Stroke in Feb 2017. Our journey post stroke has been quite eventful, to say the least, but we are still soldiering on. Despite the many drawbacks, John has been able to achieve a lot of success in trying to maintain normality. However, he has now been diagnosed with Parkinsonian traits and we are now floundering to get help and advice because of Covid. Does the story ring any bells?
On the bright side, until Covid, we were able to have holidays in both the UK and abroad. We had travelling arrangements organised perfectly – help on plane, train, ship, car,,,,. Socially, we picked up where we left off, so we entertained, joined in U3A activities – boules, photography, history group, coffee mornings etc and even dancing. We were able to visit our families in Derbyshire and Devon. Obviously, John’s Stroke Fatigue impacted on this but we fitted in or adjusted our activities around him. People got used to realising he needed rest.
However, I realised his efforts weren’t showing the improvements we expected and realise, now, that early indications of Parkinson’s was evident even before his Stroke. I’ve written a summary of John’s experience on Word and will attach it for those who might be interested in reading it. In the meantime, I intend to get as much help and advice for him as I can. He deserves the best!
Keep plodding on. Sharing your own journeys has been so helpful.
I am sorry to hear of John's Parkinsons. I lost my Dad to Parkinsons so I know the struggles this brings. I do remember reading your stories of your travels abroad and thought how brave he was to travel despite his stroke fatigue. It's obvious to all you are both great fighters and that is something I think strokes bring out in people even in they didn't know it before.
Your story of being unable to get help due to Covid certainly does ring bells with me personally and the rules seem so senseless when you are faced with red tape and hitting brick walls with the whole system when all you want is help and advice.
As you say, keep fighting for John - he does deserve better. Brenda x
Hi Veronica. Thank you for your update. Sad that John may have Parkinson's, but what a lot has been achieved since his stroke. Covid has been a challenge to all of us but,yes, we have to soldier on.
What I have missed most is my exercise classes. They stopped overnight, and the ones I do on youtube have not really filled the gap, although they are better than nothing.
Best wishes to you both.
thank you for your reply. Whenever we have things clattering in the kitchen we think of how you would report on it. Broken crockery, spilled milk,,,,, hahaha. Today, we put a fresh duvet cover on the king size bed. We giggled as it decided to tie itself in knots. You see how we followed your good examples? Hahaha.
Well, we haven't had any holidays this year - since Covid, I mean, - but felt very protected and safe during Lockdown. Just before Covid whacked into our lives, John had been doing exercises with our local Movement Disorder Clinic. He has kept regularly to the exercise sheets given to him and we recently went back to the gym. He said that he's had to go back to square one on all the apparatus! We've looked at the Parkinson's website and many of the exercises suggested are the same. Hopefully, he'll be joining a class again in September!
Take care and keep safe,
Veronica and John ??
thank you so much for responding. You regulars are so, so supportive. I did stop posting because I felt we sounded so smug being able do all the things we did. Well, we're adapting yet again. Our little dance group insist we rejoin them (just to socialise) once this is over and our U3A are similarly supportive. We're very blessed.
I don't know how much John has taken in about his Parkinson's diagnosis but it is a bit scary for me. I might need to cry on your shoulder (virtually speaking) in the months to come. I've read up quite a bit and intend to join their society. This afternoon, I spoke to one of the local volunteers this afternoon so know there is support out there - when we're allowed! The biggest issue we have is John being prescribed medication by a Consultant who has never met him and there are no appointments available yet.
However, we're getting on with life, socialising, exercising, entertaining. We've even had family visit although the two young ones (aged 4 and 7) were a bit boisterous for John at times. I told him he was a grumpy old grandad! They'd travelled up from Devon so it was really lovely to see them.
Thanks once again and take care of yourself,
Veronica and John ??
Thank you Veronica. At the height of the pandemic I had a second mild stroke. It only affected my weak left hand from elbow to fingers. Knocked my confidence more than anything. Now on blood thinners.
Tell John I've had to go back to some basic hand exercises. But I can still walk, cook and bake and can still change the duvet....
Oh dear John, that must have been upsetting. Thank goodness you can still change the duvet! Seriously, though, you have come out fighting and that is so encouraging. Thank you for sharing.
Veronica and John (still entangled in the duvet)
Hi V & J,
Sorry to hear about John's latest diagnosis.
Then as I continued reading your post I could see how the two of you are dealing with it like the amazing team you are.
Your approach is inspiring to keep doing what you love until you have to participate in a different way.
Go for it!
Stay strong and be safe.
thank you so much for your encouraging post. I didn't realise how much I missed the company and support from you all until I started posting again. Yes, we battle on and hopefully will enjoy life for as long as we can. It's such a shame Covid has hampered our efforts especially as I see John coping with less and less. On Friday, I contacted the local Parkinson's group but, like every other organisation, they're still constricted by the current crisis. Watch this space!
John is a social animal but a dinosaur with technology! However, technology has kept him going as we've been able to Zoom our friends weekly in the dance group and the same with our U3A. We've had virtual coffee mornings, local history videos and photography 'exhibitions' plus opportunity to interact with other groups. It sounds exhausting, all put together, but we manage as we're sitting comfy in our own homes and John can opt out when he needs to. Recently, we've started venturing out for 'coffee in the garden' and even ate out last week.
I've written his story for our own benefit, to see how far we've come, and will share it on the Forum. I expect many people will have similar stories,
sending you virtual hugs. Your thoughtfulness has meant a lot,
Veronica (and the invisible John) ??
Hi V and the invisible J,
So glad you have found away of maintaining a social life in these strange times. It sounds a perfect way to, no travelling to different places and having to park. You can have the perfect cup of tea etc. Win win in these uncertain days.
As everyone I will look forward to reading John's story when it's published. For me I have found more answers and support from the forum than Healthcare professionals. I used to be one, we have a lot of "book learning " but not always the practical understanding. In the beginning of your journey in my opinion you need practical advice and ideas. What works and what doesn't. Even now over two years on I can still discover something new.
Keep up the good work. I look forward to saying I know a published author.
Stay strong and be safe
Kay, I just passed the 2 year mark, so it's interesting to me to hear of someone in the same place timewise. I am still struggling with energy and tiredness. I hope some day I'll feel more peppy. How are you doing? What did you do to deal with it? Jeanne
I have learnt to pace myself and on bad days prioritise what has to be done and what can wait.
I also picked up a tip from Nicabella though not an SS herself her husband is the SS. She started writing a log / diary of her husband's achievements each day ans I did the same.
Seeing the tasks written down and completed sometimes several times in a day is a great boost. Even if all I was doing was taking the kitchen bin bag to the dust bin outside and making a tea or coffee. In my book it still counts.
I also allow myself a maximum of a 30 minute pity party when needed. Then the ultimate boost is the posts you read on this forum.
Bottom line you are already a winner you survived. Learn to be kind to yourself and most important accept help and support when needed.
I'll get off my soap box now sorry!
Kay's words are very wise. I am nearly five years past my major stroke and three months past my mild stroke. I think pacing yourself is the hardest thing to learn. I am resting at the moment before preparing the veg for a meal. However, I still have some after effects of both strokes that irritate me, especially the lack of sensitivity of the fingers on my left hand.
We all, I think, get irritated at our lack of ability to do things, but, gradually, I have been able to do so much more than when I lay in my hospital bed unable to move either my left arm or my left leg. I do,occasionally, feel self pity and anger, but mostly I get on with things. And with that, I'm now off to attack the veg!
You go for it. JJM - 1 veg - 0.
I'm so pleased that a second bite from the stroke dog hasn't dampened your spirits.
Keep up the good work
Thank you Kay- We need to hear those kind and wise words. Love, Jeanne
Thanks for your response. It really helps to hear from others going through the same thing. I am working at pacing myself- a bit of a newbie at it, but I'm catching on. Best wishes, Jeanne