Parkinsons in the family- what is new in terms of scientific testing? What do I need to know? Advice appreciated


#1

My mum has advanced stage Parkinsons and recently (probably due to the fact that my brother and I both have children aged 2 and under), I have started to think about whether this might be passed onto us. We are in our 40s. I guess I am asking…bearing in mind that there is no current cure for Parkinsons, is there any benefit in knowing what might/ or might not happen in the future?

I know that approximately 15% of Parkinsons is passed on to family members (I hope I have communicated this in the right way). Are there any new scientific advances to slow the progression? I know what all the symptoms are and that some can develop years ahead of the tremor. Is there anything that you can do as a precaution? For example- is Caffeine something you should drink or avoid? I have read mixed things. Is it significant in the scheme of things or not? Any other advice?

Thank you


#2

Hi, I am unsure of the latest on this but would be interested to know more. My mum and her brother had PD, I am currently experiencing several symptoms and waiting for second opinion (first consultant didnt examine me properly or do tests). Mum always watched me for a tremor, but she died aged 90 a few years ago so never saw my shakes.


#3

Hi @HavanaS and @Roro,

Hope you’re both well.

This is actually quite a commonly asked question which is why we have a lot of information on our website. With that being said, most people have what is called ‘idiopathic Parkinson’s’, meaning that there is no known cause and no clear genetic cause.

It is estimated that only a very small number of people may have an increased risk of Parkinson’s linked to their genes. So, it’s very rare for people to pass on Parkinson’s to their children. There more info on this here - https://www.parkinsons.org.uk/information-and-support/does-parkinsons-run-families

I hope you find this useful, of course, if you have any more questions then feel free to contact our helpline on 0808 800 0303.

Best wishes,
Reah


#4

HiHavanahs I Don, t know if this helps but here goes I, m 9th member of my family over the 3 generations my late auntie and I traced my dad his brother and sister all had pdas did their father his brother sadly I, m only one with pd still alive my bloods were sent away for gene testing but no rogue genes came to light I guess gene testing is one way of finding out if you want to know what lies in future good luck
Pete


#5

Thank you for replying. It’s helpful to hear from others in the same situation. I called the Parkinsons helpline yesterday and the person I spoke to re-assured me that there is nothing to be done and no precautions necessary other than try to live a healthy lifestyle as the scientists still don’t truly know the causes. Apparently in studies, one person in a set of twins has gone onto develop it and the other hasn’t. Hope you are feeling fit and well


#6

Hi Peter
Thank you for taking the time to reply. I don’t know how long you have had Parkinsons but I hope you are doing ok.

How shocking that 9 members of your family had it. If there were no rogue genes, were there any common environmental factors? I guess not- or you would have mentioned it. I think when we have a family member with Parkinsons and we have lived through it, we probably know TOO much in terms of the symptoms (my mum has had it for 15 years) so we have a sense of how things might play out.

Thank you for getting in touch and sharing the information


#7

Hi Havanas your welcome I have been diagnosed for 4yrs but had symptoms for about 18 months previous to diagnoses my major problem is my balance and my uncanny ability to walk into door frames but you just have to keep fighting if you think I can help please do get in touch all the best
Pete