Misdiagnosis?

Hi. I was diagnosed 11 years ago at the age of 48. I have never accepted the diagnosis but the have always been told that the DATscan I had shows that I have Parkinson’s. However I play tennis competitively at club level, I play table tennis competitively at club level, i regularly play 9 holes of golf - occasionally 18 when time allows (walking not in a buggy) i regularly walk 4-5 miles. I cycle 4-5 miles, I swim confidently. I work out in the gym and my personal trainer says I’m one of the strongest ladies he knows. I do yoga (beginner level) and play bridge competitively… My consultant says it’s doing all these things that keeps me going. My husband says I react well to the medication. 24 mg ropinirole/ 10mg escitalapram / 4 x 25mg/100 mg sinemet. Everyone I meet says you can’t tell I’ve got it ? Is anyone else as active?

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Sounds like you’re doing something right.

I use to be a runner & cyclist before Postural Instability struck. I’m still a powerful swimmer.

Hi lemon. Thanks for your reply. How long after you were diagnosed did postural instability strike?

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I am 73 next week ,diagnosed 91/2 yrs ago and for the first 7 yrs was only on Mirapexin and Azelect. I then started on Madopar 100/25 3 times a day. Within 6 months started to get dystonia and dyskinesia… Dosage changed to 50/12.5 five times a day 3 hrly and was fine on this for about 9 months.Then needed to increase to 6 a day.
I ve gradually increased to 100/25 5 times a day 3 hrly plus a slow release at bedtime.

Until a ruptured bicep ( throwing ball up to serve)4 weeks ago I was playing tennis twice a week ,cycling 35-40 km twice a week ,and walking 40-50 km a week and archery.
I’ve a turbo trainer now for the bike and have upped the walking till normal activities resume!
I also still skii 2-3 times a year and managing diy/ house maintainance ,plus gardening.
Much research has been done on the power of exercise and the latest research by Bas Bloem has shown that in the early stage ,exercise is AS good as meds.
Meds do wear off a bit towards the end of the day but generally people are always surprised to hear PD is living with me.I’ve also found protein affects meds working so try to have most of it in the evening.
I find I need more rest now and nap most days at some point. I sleep 41/2 -61/2 hrs a night and generally have
a sleep score between 75-80 on Fitbit.
My goal is to do as much as I can for as long as I can and not let PD take control.

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Hello
Well done keep it up for as long as you can as all the research suggests exercise (is it is proving the case for everything) is a key factor to remaining strong and well with Parkinson’s. How do you manage with work wise ?
My husband was diagnosed via a DATscan 10 years ago at the age of 68, he was still working full time which involved commuting an hour each way by train. He cycled 20 miles twice a week and spent hours in the gym including swimming and played golf. He retired aged 75 having had a couple falls rupturing arm muscles. His cycling and gym hobby despite replaced hips and knees continued until 3 years ago when Sepsis came calling. People were unaware he has Parkinson’s and those who don’t know him now are still surprised. However the general public’s perceptions/knowledge of Parkinson’s is very limited; tremour, freezing and blankness being the most common symptoms recognised. My husband still doesn’t portray these symptoms- however his cognitive ability is poor, he suffers bowel and bladder problems along with general muscle weaknesses. He has poor balance and awareness of where he is within his space. He zones out mentally and struggles to maintain awareness in conversations. His speech is beginning to slur esp when he is tired and his sleep is exceedingly disturbed. He also suffers badly from anxiety.
Parkinson’s is soooo very different for each and every one of the unlucky ones it attacks. It appears the researchers and doctors are getting closer to the term Parkinson’s becoming an umbrella term for a number of different dis orders they will be able to identify. Hopefully medicine will be better able to target these disorders.
Having had a great uncle who was diagnosed and experienced seeing his decline Some 40+ years ago, I was very fearful when my husband was diagnosed. I am happy to say the team at Kings College hospital he sees are wonderful. They and Parkinson’s U.K. provide great resources and support.
Keep up your activities for as long as you can they are obviously working .

Hi flossie and plus 1. Thank you so much for your replies although if I’m honest I feel disappointed that it is possible to be so active and have Parkinson’s. My husband says I’m in denial so I guess he’s probably right and I’ll just have to accept it. I’ll keep going though and I know that even though I’m writing this I still can’t believe it. I think being in denial probably helps me cope so I may just carry on with it.

I was diagnosed in 2004 when I was 55. At that time I was doing triathlon and although I was fitter than I had ever been I knew something was wrong. Following diagnosis I resolved to keep as fit as possible and continued to swim and cycle but had to give up running due to an old back injury. I did start playing tennis, which I hadn’t done for 20 years. My efforts paid off and with the help of medication I amazed everyone. After 15 years my consultant said he had never known anyone stay so well and active for so long. Sadly it was not to last. I began to have falls when playing tennis and the medication became less reliable. This year I have really gone downhill and have developed some of the more unpleasant side effects including constipation drooling and weight loss and could no longer predict when I would be ‘on’ or ‘off’. I have changed from sinimet to stalevo and after a few difficult weeks am now much better. I still cycle and do a lot of walking (sometimes on the treadmill.) I have had to accept that the honeymoon period is over but I am still determined to remain as active as possible.
All I can say is keep it up as long as you can but unfortunately pd will probably win in the end. Sorry.

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Hi @janeyS @Papillon @Flossie88
I take my hat off to all you fitness fanatics…you put me to shame whilst also inspiring me to get up and exercise properly whilst I still can! All very impressive.
But anyway, on the subject of denial. Why is it assumed to be a bad thing? Obviously in some circumstances it probably is ( refusing to believe you are driving towards a cliff edge, for example) but in others it seems to be a good position to adopt. What is the alternative?..surrender? give up? I guess a refusal to take prescribed medication due to denial could be problematic, but in my view mindset is so important…I wouldn’t go so far to say that it can change objective reality (if there is such a thing) but it makes the world of difference to how you feel about and perceive your reality, and that makes a huge difference to what you do in relation to it. Maybe there is something of a parallel with a cancer diagnosis. Some people “fight” it, some people ( and their family and friends) automatically assume it is a tragedy and that they are going to die within weeks, other people give up. But the reality is that it is different for each person, both the illness itself and the treatment and how they approach it. Many, many people “ survive” these days and yet it is still seen as a death sentence ( which it obviously is for some) and can take over people’s lives completely. I say all this having had cancer myself many years ago, of the type that would have finished me off had I not been “ lucky” enough to discover it early. Life itself is terminal…it has become something of a worn out cliche to say we never know when our time is up, but it is so true, whether we have a diagnosis of something or not, so why not live the fullest life we can, whatever our circumstances and not be defined by diagnoses, whilst accepting the treatment that we are lucky enough in this country to have available to us. And surely we should live our lives in the way that works for us, not what other people say we should or what works for them.

When I had cancer I wasn’t in denial it was just a b….y inconvenience .Chemo was chore but I still continued with my normal activities…Chemo Tuesday ,tennis Wednesday,blitz the house Thursday, S… day Friday then back to normal for 21/2 weeks till the next one. Swam every day rode my bike,skied, just let it know who was in control. Never put off till tomorrow what you can do today live life in the fast lane and enjoy every moment.I’m a doer not a thinker!

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