I need some help please

Happy Christmas! I know it’s Christmas Day, so I won’t expect a response from anyone for quite a while! ; ) No problem.

I now have a (what feels like constant) tremor in my right thumb. I knew this was coming. I have managed to hide it for a long time by tucking my thumb away or holding my hands in a certain position. However, I was carrying my 7 year old daughter this evening and she asked why there was a small shake. I also have a 5 year old.

I have seen a Neurologist twice over the past few years. No diagnosis. Other symptoms aren’t troublesome enough to have impact right now. I am on HRT. I am 52.

Please can you give me your best advice. I just wish the scientists would hurry up and come up with a cure or at least something to halt things/ stall things.

I should say that my mum has had Parkinsons for 20 years so I know what’s going to happen further down the line (hopeful for interventions from science) but could anyone give me any hope on how long I have before other symptoms can emerge?! I know it is all very individualistic but looking for some feedback. Also- advice on what I can take. I take Vitamin D on the advice of the Neurologist. Thank you. Happy holidays

Morring justed seen your message and no one asgot back to you so hear goes not been on for a long time have you been diagnosed with Parkinson’s and as you twitching in thumb it mite be a trapped nevr in your thumb making it shake I have afriend who shakes her head none stop like she as it but no Parkinson’s there Parkinson’s can come in so meany ways I have had it now since 2010 people who don’t no me don’t no I have Parkinson’s sorry icarnt help you eny more in depth s justed don’t let it soil your Xmas with your Children iam waiteing for my 7year old grand draughter to wake up as she staying with her mum like thay do every xmas put it behind you if you can and enjoy life don’t let parky win god bless you all x happy new year :partying_face:

What other symptoms? Symptoms don’t have to be troublesome to be relevant.

How many of these can you tick off?

People can live for decades with PD, sounds like you already know this from your mum. It’s a marathon not a sprint.

Was diagnosed at 49 three years ago. Good luck.

Hello Havanas. I am so sorry to hear of this development. There is nothing I can say to ease your anxiety over this and having spoken to you before knowjust what a lot you already have your plate. I wish you were closer so you could come to our Parkinson’s cafe just through your role as yr mothers carer.

It is oh so easy to jump the gun with these things especially given your family history but if you are able to try, not to cross the bridge into a full PD diagnosis until it happens.
You could consider taking symprove the probiotic. I firmly believe for many pd starts in the gut and when my husband was taking it this was applauded by his gastroenterologist.

However things unfold feel free to message me.

Much love to you xxx

Hi Havanas. This just popped into my brain -Have you thought about researching all the various trials that are going on especially those for early onset/diagnosis if you are showing the relevant bio markers for PD.
It might be worth contacting the research department of this charity and/or the CureParkinsonsTrust.
I am sure our neurologist ProfessorHu is doing a lot of research in this area. She is in Oxford. John Radcliffe Hosp.

If you can get onto one of the trials you will be well-looked after. Additionally some of the trials are suitable for those in the really early stages. Also be good for your psychological well being to be taking some positive action.

Go well xx

Thank you. It’s good advice to focus on the kids. I appreciate it. :blush:

Thank you pcyc. Yes- I sadly know the symptoms very well due to living with them with my mum for 20 years. I am clutching at straws and wanting collective wisdom as to how long I may have before other (more bothersome) symptoms emerge. I would also love to hear from anyone who appears to be in the same boat as me:- and can identify with the challenges……young kids, similar age or similar stage of the Parkinsons path. Or someone who has lived through it and can just say:- ‘don’t worry, you are going to have a good few years yet after the first tremor in the finger or thumb’ :grimacing: I also would love to know if there is anything I can do now to stop the decline. Realistically, I know that there is not. However, the ever-hopeful part of me thinks that science is going to catch up soon (fingers crossed) and some interventions are going to be possible. Thank you for your time in responding. I appreciate it

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Hello Yogalady
Thank you so much. I will research into Symprove and find out how it helps. Weirdly I do eat a lot of natural yoghurt. My mum couldn’t get enough Greek yoghurt when she developed Parkinsons and weirdly I eat quite a lot of it too now. Never used to like it. Will read up. Thank you so much for your reassuring message.

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Hello Yogalady- yes, I like your thinking. It’s a good idea to get involved in a trial. I think I would be reassured if I was taking some positive action. A huge thank you!

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It’s very possible that this is something other than PD. Have you had your thyroid hormones checked recently? If it turns out to be PD, continue your life, reduce stress, exercise, eat well and start medication when symptoms no longer allow you to do the things you want and need to do. I was diagnosed at age 55 after 4-5 years of vague symptoms. I’m 67 now and still live a full life and doing well on Sinemet (Carb-Levo) only. Early on I was able to leave my stressful job and that allowed me to exercise and do the things that make me happy (gardening is my favorite hobby). Good luck - it will be okay. Iris

Hello Iris1
Thank you so much. That is really re-assuring. I appreciate you taking the time to let me know that! I will try to stop freaking out! :sweat_smile:

The one major thing I learned from First Steps and Fighting Fit (2 multi-day Parkinsons courses I have done and recommend) is that vigarous exercise helps keep symptoms under control. 30 minutes a day 5 days a week when you’re out of breath. I don’t always manage that but I try my best. It does seem to help me.

Hello Pcyc
That is good to know. I swim and cycle but perhaps not enough. What kind of exercise do you do that is classed as vigorous? Aside from staying fit, how does it help? Is it the endorphines that are released from exercise? My mum always did play a lot of golf and perhaps that helped her for a good few years.

I do wonder on the Nightmare front and why people with Parkinsons have more and more nightmares as time goes on. My mum used to have such vivid dreams where she was lashing out.

I cycle (though not so much in the winter). I have an 8 minute cycle to work 5 days a week - nowhere near enough. I cycle some weekends, perhaps 30 miles.

And I play badminton 4 hours a week. PD has slowed my reactions down and worsened my game which is very irritating.

I think the exercise helps my PD. Even if it doesn’t, it definitely helps my general health and wellbeing. So I consider time spent exercising very well spent.

Interesting to note that both my activities are quite social occasions as well.

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