Hello to all of the Parkinsons community
I have been watching the London Marathon today, I have always loved the inspirational stories and great examples of courage of many of the runners.
I found myself today feeling very emotional and reflecting on my own life and where I am today.
I wa diagnosed 3 years ago this month! As we all are on our own personal journey, we are individuals but we have this in common. I thought I had accepted my illness, but at times it has brought me to real distress and a loss of the sparkle and vivacious spirit that makes me who I am.
I love to dance and that has always made me feel alive, I dont dance regularly, and when I last went out i found it challenging but was able to get lost in the sheer enjoyment and passion that I have. There were moments to feeling a little sad as I found my balance and stamina had changed.
In addition to my dancing, I really want to get cycling. I do love to ride a bike, but have never really done very much of that since my youth, except a short period a few years ago when living in Sussex and i clocked up a few miles in a single week.
I am here in Dorset, and I am looking for anyone who has Parkinsons Disease or who cycles regularly and is happy to become a mentor for me. I haven't got my bicycle and need to buy a second-hand bike.
I am fortunate to be living on the cliff top near Bournemouth and that gives me access to the wonderful promenade which gives cyclists several miles of path, only unavailable during July and August in the day time.
I have been through a tough few years since my diagnosis and they are not even related to coping with PD. The London Marathon and its personal stories have moved me and I recognise so many with great burdens. I know I want to take control of my life and learn to manage what I can.
The last week I have been having pain in my left leg on walking, at the moment my PD nurse feels it isn't related to PD and so my GP is looking into things. I have felt distressed, I am not ready to give up on life and wish to be of help/inspiration to others. I know I have much to give.
I have to get my game together, I do not work currently and have flexibility as to making plans for cycling with others. I make friends easily, so no concerns there.
Please please, get in touch with me if you can help or give me encouragement.
Hugs and love to all my PD friends/community out there!
Aye aye lets be clear I live in Scotland so we will never cycle together but it's great cycling feels amazing . The main thing is enjoy it and go your own pace and when you need a rest just stop and recover and the more your out on the bike the shorter your recovery time will get . Good luck enjoy stay in toutch tooraloo Ian
Hi
Can only echo what Ian has said.
I am in Somerset, but still too far away from Bournemouth.
My walking leaves a lot to be desired, but I can cycle and feel relatively normal!
Enjoy the fine weather and longer days.
S
Sorry to but in but how's edd supa , not heard from you in a while good to hear your cycling keep it up we got something that works tooraloo ma wee sunflower
Ian
Hi Ian
Ed is fine, enjoying spring sunshine, and longer days so he gets two walks some times. He is enjoying, or enduring, the company of my daughters Border Terrier, Lucy, for a couple of weeks. Trouble is, she wakes up very early and lets us all know!
Yes, cycling is good, although the next day I can't walk anywhere. Seems it uses up every bit of Dopamine and takes a day to build up again.
But, essential for my sanity!
Has the York fandango been yet, can't remember what date it was set for .
S
Thank you Ian, for taking the time to reply, I hope to get my bike next month. I have a cousin in Scotland, he lives in Edinburgh.
Thank you Supa, I havent been on the bike for a few years, but hope to get it next month, in time for the good weather!
Good morning. Well as you watched the London Marathon. I was running in the Longhorn run at Thorsbury on Sunday afternoon.
I am not safe to ride on the road (I wobble too much) but enjoy riding in country parks. Good luck . Mike
Hello Het, I'm a carer, my husband was diagnosed a year ago! Speaking for myself, our new lives are certainly throwing us those challenges we've been hearing about. Bill wouldn't be able to ride a bike because he'd be too wobbly! But he's fine in the car! I can't ride a bike because I've got no balance on one. I even cling on for dear life on an exercise bike!!!!! My point is, if you feel safe and have had a couple of practise runs where you can topple onto grass, wear the correct protection, a helmet is surely a given. Your promenade sounds great, do buy that bike and go for it!
sending you good vibes, lots of confidence and safe wishes
Hello Supa, it's interesting to hear you say - you'd use up all your dopamine and need the next day to build it up again - is that how PD works?
I'm a carer for my husband, diagnosed a year ago. We understand that he doesn't "make" dopamine any more so he's on meds to give him some. I haven't heard it put like that before. He can only see his neurologist once in NINE MONTHS, so he's due to see him in August, there's never enough time to remember all the responses we get from him. I do write our questions down now, but don't always remember all the answers. He does have a PD Nurse but he doesn't want me to keep bothering her!
Is that what someone with PD does - use up their "allowance" of dopamine? I'd be really interested to hear anyone's response.
I've only just joined the Parkinson's Forum and have posted in the Carer's Forum, but nobody responded! Which has made me feel even more isolated. My husband isn't interested in joining in any sort of group, but I need to.
thanks for reading this x
Mummabear, hasn't your Neurologist suggested Deep Brain Stimulation ? Perhaps you should mention this to him at the next appointment. PD Nurses are there to help you so why shouldn't you ask questions of them. I have never heard of a Dopamine Allowance or building it up naturally, it is my understanding that if your brain isn't producing sufficient dopamine that you would be recommended for DBS.
Aye hello mama bear
sorry I haven't posted sooner , I don't know nothing I am not a dr or a neuro but I can say it does feel as if I do build up sometimes like if I sleep ( switch off) when I wake up walking is a little better for a short time a very short ltime but if you push on ( do to much ) nothing works the best way is to try and do everything in slow motion . Slow and smoothly , this is just me please understand we are all different with PD I don't think there is two people the same . Please don't listen to some of what you read on here as what's poison to one can help another and we are NOT doctors . We are in the hands of our neuro and we can tell what we feel . But we can't tell them their job . Good luck mama bear all the best Ian
Hi Het,
Just wondering if you have seen a physio therapist who has an understanding of Parkinsons. I do not know how fit you are and bearing in mind any exercise is better than none , check first if cycling the right activity for you.
I am no expert but now in my ninth year of Parkyland struggle at times to get up out of the chair, and am like a beached whale marooned in the bath.
My physio told me not to do any cycling as in the same position as sat down on the settee. Forgive me did not understand all the technical stuff on muscle groups, position of spine etc but just know swimming and yoga best for my mobility issues.
It might be worth checking but we are all different. There is a Parkinsons uk excercise dvd that is good. Socially joining a club to swim, cycle or do yoga etc should lift your spirits, and I wish you well, without nagging just check whats best for your individual needs. I wish I had seen a physio sooner. x