My mother in law was diagnosed with Parkinson’s disease just over a year ago. She is currently in her early 50’s and we believe that the Parkinson’s was triggered by a traumatic event in the family. Since her diagnosis, my mother in law has decided to take no medication and is on a fully liquid diet (of maybe 300-400 calories a day), of only fruit and salad as her digestive system seems to have been badly affected by the Parkinson’s. She has read online about some “herbal treatments”, and has decided to take this route instead of taking any medication. In the past year, we have seen a deterioration in her movement (she is extremely stiff on her left hand side and is now dragging her left foot), she has lost a considerable amount of weight, and in the past few months she is in near constant pain. We have also noticed slight lapses in her cognition recently, such as very slight forgetfulness. Despite a great amount of research, I am unable to find any information that may be able to help us prepare for the potential future that we could be facing, or the implications of the illness and her decisions.
Any advice or information would be massively appreciated.
Thank you so much in advance for any help you can provide.
I’m sorry to hear about your mother-in-law; however, I can assure you that you’ve come to the right place for information and support, and I’m sure you’ll hear from members of the community with their own experiences. In the meantime, feel free to explore our website for information and support: https://www.parkinsons.org.uk/information-and-support/complementary-therapies
You can also contact our Helpline and Local Adviser Service on 0808 800 0303 or email: [email protected] where we have specialist nurse advisers who will be able to discuss your concerns, and our helpline and local advisers can also link you in to support in your area.
Has she used Ginsing to keep her energy level up? I can maybe give you some thoughts to look into for pain if I knew more about what she’s tried so far, and if she’s willing to try a medicine derived from a plant.
Hello there Rachel
I’m sorry to hear of your Mother In Law’s diagnosis.
I can’t tell you anything about herbal / alternative treatments as I have no knowledge of experience of it.
However, I can tell you about my Hubby.
He was diagnosed nearly 3 years ago at the age of 52 and we both struggled to come to terms with the diagnosis.
He was put onto medication immediately and we noticed some improvements quite early on.
This forum was invaluable to us and I’m so pleased that I found it.
I did lots of research and ringing everyone that I thought may be able to help and finally found a Neurological Personal Trainer.
My Hubby had ‘one to one’ coaching twice per week and began to make big improvements in his strength, balance, co-ordination and mood.
There were days that he didn’t feel like exercising but with a little gentle persuasion he got on with it.
He’s currently doing very well and we’re both in a better place than we were at his diagnosis.
I’m not trying to discourage your Mother In Law from her treatment choices but I just wanted to let you know how much of an impact exercise can have on this condition and wondered whether it’s something she may consider alongside whatever else she’s doing.
I realise that this condition affects people differently, as do treatments but I can honestly say that the combination of Sinemet and exercise has given my Hubby back a better quality of life than he had 3 years ago.
He can now do push ups, pull ups, sit ups and many exercises that I myself am unable to do.
I’m sure you’ll get more replies forum other members and will get lots of suggestions that you can discuss with your Mother In Law.
PS When I first joined this forum I gave myself the username ‘Worried Wife’ as that’s exactly who I was. I thought our world was ending. I cried most days and couldn’t say the word ‘Parkinsons’ as it made me sob. That seems so long ago now. I’ve recently changed it to ‘Proud Wife’ as I am so so proud of the work my Hubby has put in to keep himself active and as well as he can.
I’m not suggesting that this is the only route to take but wanted to share it with you in the hope that it may be useful to your Mother In Law.
Just reading your comments and couldn’t help but notice your username was worried wife…my first post was worried wife! My hubby is also 52 diagnosed in July, we are coming to terms with it all,infact I spent the best part of of a year in tears, it is so scary, but this forum has really helped and even tho I tell my hubby when he is ready, to take a look, as there is some great advice on here, he is not entertaining it…just yet! He is also not on meds Rachellouise as he is adamant he does not want nor need them, his neurologist said only he will know when he should need them so he opted for supplements which is coq10 advised by his neurologist , B12, vit D…I am keen to find out more about Mucuna Purien as apparently this is very good?
Very sorry to hear about your MIL’s recent diagnosis.
I am a carer for my mum age 60, diagnosed 7 years ago but had PD for around 10.
It is insanely scary and took us a handful of years to really accept it and about 6 to fully understand it. It’s a CONSTANT learning curve, new medications, new therapies, advice, tips etc.
One thing I would recommend is having a look on YouTube for some Parkinsons Disease TED talks etc. There are some INCREDIBLY informative people in the videos, whereas in real life, its SO difficult to find a knowledgeable, good and easy to visit Parkinsons Specialist.
Theres lots on there from people without the disease, incase you are too scared to watch a video of someone with late stages of the disease (took me ages to pluck up the courage).
Having knowledge feels really good in the face of such a confusing and cruel disease. I wish I’d done more research and watched more videos at the start. We spent ages so clueless, worried and scared to look. Having knowledge means you can spot symptoms and get them treated early and suggest things you’ve read about online online to help, plus loads more.
Another recommendation I have is to read the book ‘So I’ve got Parkinsons’. This will give you a good idea of what the next few years looks like, but without being a serious book to read.
Mucana Pruriens is a natural source of L-Dopa. Levedopa is of course the pharmacological prescribed drug for PD & gold standard. You know I had always thought that the prescribed version crossed the blood brain barrier better then the natural herbal version, and I believe that when combined with Carbadope that is true as more of it gets there (which it is in my prescription), but after doing some more due diligence on Mucana, I’m not so sure I shouldn’t be taking it too (or even instead of my low dose prescription if at some point my Ambroxol use permits me). I may just try the combination for awhile. Thanks for inspiring me to look again at it!
