Hello
I think I have Parkinsons. My mum has been diagnosed since 2003 so 16 years. I have enough of the early/ pre cursor symptoms- nothing that impacts my life yet. I haven’t mentioned it to the doctor or been diagnosed.
I have two children aged 2 and 3. Obviously, I want to carry on as normal and there are several reasons why I do not want to be diagnosed yet. Firstly, my children. I guess I don’t want to hear it being formally diagnosed. Secondly, my job. It was difficult enough to get a job again after returning to work after children…without the impact of them knowing I have Parkinsons. I work in freelance/ interim roles currently.
My questions are:-
What diet/ lifestyle/ exercise changes should I be making to my life? I know this doesn’t change the inevitable as I have lived through Parkinsons with my mum but you never know…there are new ways of thinking and new advances with science all the time.
Basically, I am just looking for your best advice. Anything that, knowing what you know now, you would tell yourself as advice if you were to go back to the early symptoms.
Hi Havana I am sorry to hear you are having problems personally I would not hide the fact you may have pd you must have given some thought to pd being hereditary I, m 9th member of my family with pd if I was in your position I would be asking for a dat scan to find out for sure and if it, s positive you need a pd nurse but that is what I would do it, s your choice I, m in process of trying to get my cousin to do same as I advised you please don’t think I, m unsympathetic it, s just I have seen so much of pd I tend to be straight talking if I can help please do get back to me
Pete
Hi Havana
After years of not knowing and thinking I was going mad it was a relief to know.
Yes, not easy to live with but I can now face it head on , get the help I need and make decisions to suit me. I currently don’t take any medication, I shake but I believe I’m not ready for drugs. My choice.
I am always out walking and two times a week in the gym. I am also still at work, work have been great even if they really don’t fully understand .
i hope it is not PD but if it is get all the support you need.
Wishing you well.
Annie
Hi
I have been symptomatic 3+ years, PD confirmed in May.
Tremor in dominant hand and stiffness are my main symptoms. Currently managing without medication . My Neurologist recommends staying off medication as long as possible.
I still work but haven’t felt the need to tell my employer as I don’t need any adjustments.
I dog walk- 3 miles every day, 5 at weekends, and gym 3-4 times a week, resistance training, exercise bike and treadmill, main limitations due to back problems rather than PD. exercise definitely helping with stiffness.
Getting diagnosis confirmed means there is support and help and you only need to go down the meds route when your ready.
Its a matter of finding what works for you. it may not make any difference in the long run but at least I feel I’m being proactive rather than just buckling under .
good luck
I just need to say this. Some of us on here have not been as lucky as yourself and have not been able ato stay off meds and be proactive as you so put it and not being able to stop yourself from buckling under as you so put it. P D is different for every person and some of us have other things to contend with as well. Just a wee reminder
Hi,
something which gets little attention in my opinion is the growing significance of treatments targeted at specific genetic mutations. Some peoples PD is caused by mutations of LRRK2 and GBA genes and there are treatments being tested right now,e.g. Ambroxol, which target them. So targeting should be more effective and have fewer side effects.
Regards,
Dave.
I think the comments and advice that you’ve received so far is really helpful, especially as it reflects how Parkinson’s affects everyone differently. I’m sure the prospect of having Parkinson’s is scary, particularly as you’ve witnessed the affects of the condition on your mum. However, I’d strongly advise that you speak to a health professional about the symptoms you’ve noticed as they are most qualified to offer you information and support on this.
However, I can appreciate and respect your decision to carry on as normal so the only other things I would suggest would be to explore the diet and exercise sections on our website for lifestyle adjustment tips/info. Lastly, as you know, you are always welcome to give our helpline a call if you’d like to speak to someone confidentially about this.
