Today was my neurologist appointment, today she told me I had Parkinson’s. Today I was put on medication.
Today is my Parky birthday, my way of dealing with it was to get cake. Today I got to tell my manager as she has helped me in the last 12 mths adjusting hours etc for me to continue to work. Today I got to tell my family. But most of all today I am relieved that I am finally diagnosed and I can move on with life. Today I have PD but PD doesn’t have me.
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You got cake to deal with it – well done lady, come aboard!
More seriously, I do remember that feeling of relief, that at last you know, hang on to that and get more cake. There are always people here.
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Welcome, so glad to hear you’ve had great support at work. Hope it’s the same at home. I found the first year really stressful until I decided to have Friday’s free of PD. It was the only way my brain could cope. Just listen to your inner self, be kind as you learn to live with it. It’s your body - love it.
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It will be challenging but your attitude very much mirrors my own and almost ten years on I am holding my own more or less. I hope it proves to be the same for you. Good luck and as has already been said, you will always find support here.
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Welcome Lisa, You are giving off the positive attitude that I try to instill in new members on here, carry on in this mind set, it is the only way to be. If you find that there is more information you want, just ask, we are all here for you to give you the support you may need. Remember you’re never alone on this Forum, we all have the disease in different forms and can relate our experiences.
Les
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Welcome. I only joined recently but I would say the people on this forum are ESSENTIAL in our lives. So helpful and supportive and hilarious! I think I might celebrate my diagnosis next year with a cake. Top idea!
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Hi there it’s not the end of the world only if you let mr parky
win
10 years for me down the line still doing wot I won’t to do
Course it’s been hard .
But if you need to speck too some there’s always someone hear
All the best
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Hi Lisa1968 welcome to your new family having pd can be scary I am 9th member of my family to get pd though my cousin is showing signs now having seen many different problems I am here to help if I can what I will say is Don, t over read what could lay ahead as none of my family have exactly same symptoms so try to deal with things as they arise and most important get to know your Parkinson’s nurse as soon as possible you will find loads of help here if you need it all the best
Pete
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Hi Lisa
I’m glad your company is doing the right thing.My company was very supportive, even allowing me to have 5 weeks off for a holiday of a lifetime to Australia and New Zealand. We had a lot of holidays pre PD diagnosed in 2010 and continued to have more until just recently. Since 2010 we have been on several river and sea cruises , a China tour including the Great Wall and a Yangtze cruise. If travel is your desire then there’s no need for Parky to dictate what you can do at least in the short term. It’s only this year that I have curtailed some of these., as the condition is getting troublesome.Family holidays have also played a big part in each year, when I rent a house in the UK and take all the children and grandchildren on holiday. It’s good to involve them all and there’s now 15 of us away together.
Also I suggest you get involved with the local Parkinson’s Support Group where you will have friends and he fun. My local group in Telford holds monthly meetings with a variety of speakers in we hold weekly therapy sessions on either Physio, Speech or Tai Chi. We also have weekly indoor bowls with some members also competing in an indoor league against more able people,
I must not forget the carers who we look after by organising regular lunch meetings just for them.
I suppose what I’m saying is that there’s still plenty of life after PD
Thankyou, yes staying positive, yesterday and today have been bad days with pain, getting through it.
Thankyou, we all cope with it differently don’t we, I love PD free Friday’s, that’s awesome. Family especially daughter are supportive, my son just said hope sumptoms don’t get too bad, I think it’s because we don’t know much about the illness and just taking it day by day. Hubby works away and I don’t think it’s a phone call I want to have so will wait till ge comes. Home next week.
I am from Perth Australia, have travelled to Italy Spain USA France and Hong Kong a couple of these when I had Parkinson symptoms Hong Kong was challenging because I was having walking issues, stiffness and fatigue, but with rest stops we had a fabulous time.
Having couple of bad days today hoping to return to work again Monday. Yet going with the flow. Excruciating pain in shoulder blades and back for last couple of days, so hunched over. Just started low dose Madopar yesterday, less stiffness but seems to be wearing off around 4 hours , this morning pain was so so severe where I couldn’t walk because of pain took meds 6:30 am but buy 9:30 am back and shoulder pain was back. So not even sure if I am taking meds correctly. Will ask neuro on next appt, could it be too low a dosage?
Thankyou so much, i definitely will and have been posting, not offering much to others as I don’t really know what the disease is and how it will affect me and my family, treading through mud at the moment. Yet as family still make jokes and treat me no different helps.
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When isn’t cake a great idea:grin:
I have been stalking for a while when I suspected I might have Parkinson’s. I agree all are very helpful positive and warped sense of humour right up my alley.
thankyou, yes dealing with it best way we know how by cake and laughter:grin:
Thankyou, that is one thing I know about this disease that everyone is different. I have had a couple of bad days with extreme shoulder back pain that keeps spasming, takes my breath literally away. So unfortunately no work for me for couple of days. On meds now madopar lasting between 3-4 hours on low dose three times a day, yet not sure if the dose is too low, guess it is a guessing game till we get it right. A discussion at next neuro appt.
I was on 4 x 250mg Madopar until recently as I have two tremors, it was thought that putting it up to five a day would help but is making no difference at all. I have been recommended to try Clonazepam for my Dystonic tremor and having taken two tablets in two days, it is making me very drowsy. On the brighter side it is good to be able to laugh at yourself and have friends join in with it. Remember, take each day as it comes and do the best you can within your ability, there is no need to dramatically change your lifestyle because of it, just carry on as you are.
les
What a superb attitude you have towards PD - positive, defiant, determined. Well done. So often people seem to collapse when they get the bad news. It is no good feeling sorry for yourself. We Parkie Folk just have to pick ourselves up off the floor and get on with life. I’ve never seen it expressed so well in so few words.
JCPB
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Hi I was diagnosed 2 weeks ago and tbh just really scared, got a call from the doctor today about the meds but how can they be prescribed after a 15 minute consultation. I have a brain scan next week should I wait till then? Also worried about the side effects I work in an office got visions of doing all sort of daft stuff!!! Is it advisable to take a break in case I have side effects ?
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