Women make up about 40% of all Parkinson's cases – but the Movers and Shakers panel doesn't often reflect that! Do we pay enough attention to a woman's experience of this disease? And does medical science have the same blindspot? On this week's episode of the show, we're talking about the female experience with PD, how the disease differently impacts the genders, and what we need to do to even the playing field for biomedical research.
By Podot
Each week Rory Cellan-Jones guides us between the laughs and moans in the pub. To read Rory's summary of this week's episode click here.
Guest Biographies
Richelle Flanagan
Richelle is a CORU state registered dietitian who has been practicing Dietitian for 18 years. She was president and CEO of the of the Irish Nutrition and Dietetic Institute (INDI), the professional body for Dieticians in Ireland. She noticed her own Parkinson’s Disease (PD) symptoms when she was 3 months pregnant with the daughter. She hid her diagnosis for 2 years for fear of the stigma both socially and career wise. After attending the World Parkinson Congress in 2019 she was inspired by other people with Young Onset PD to speak out to drive change in treatment, care, and research for people with PD. She has since become an ambassador for the World Parkinson Congress in Barcelona, 2023 and a committee member of the Dublin branch of the Parkinson’s Association of Ireland. She is particularly passionate about the unmet needs of women with PD. She recently co -authored a paper on the unmet needs of women with PD https://movementdisorders.onlinelibrary.wiley.com/doi/10.1002/mds.28921.
She is a co-founder of the Women’s Parkinson’s Project www.womensparkinsonsproject.com and co-founder of a start-up, My Moves Matter www.mymovesmatter.com, a digital health app to the meet the specific needs of women living with PD.
Shafaq Hussain-Ali
Shafaq lives and works in Yorkshire as a General Dental Practitioner, with an interest in treating anxious patients. In 2019 she was diagnosed with Young Onset Parkinson’s Disease (YOPD), at 40yrs of age. Since then she’s become a keen Nordic walker, Crochet-er, and regularly attends Kung Fu lessons – all of which help manage the YOPD symptoms.
In 2022, having reduced her commitments in General Practice, she took on the role of Trustee and then Co-Chair of the BDA Benevolent Fund a charity dedicated to helping Dentist’s, their dependents, Dental students and Refugee Students who find themselves in financial and emotional Strife. In addition to this she regularly volunteers to help with research into Parkinson’s, work with Dentaid and at Parkinson’s UK. Research within the field of Parkinson’s and other Neurological conditions has become a passion, and to this end, Shafaq was delighted to accept the role of Honorary Research Fellow at QMUL.
My Parkinson’s and Menopause Story
By Shafaq Ali
The average age of Menopause is 51yrs. 1 in 100 will experience it during their 40’s and 1 in 1000 in 30’s. I am one of the lucky few who experienced it during my 30’s and was done and dusted by the time I was 40!
At the age of about 34yrs my periods became much heavier, and as my husband kindly put it – my mood was more irritable in the build up to, as well as during, my Menses’. I was to put it mildly becoming a bit “snappier” with the children - then 4 and 6yrs old (cue violins!). In truth I’d already realised this – just him saying so to me was all I needed to go to the GP. The GP saw me quickly, and once it was determined I didn’t want any more children they consented me for insertion of the Mirena coil. This was ok initially but after a year or so of very irregular bleeds, I had it removed. But, this didn’t resolve my problems. Still at this point no one thought early menopause, me included - I was in my mid 30’s! My GP then referred me for a scan, which revealed that I had Fibroids. At which point they encouraged me to try the Mirena coil again. So at 36yrs, I had the Mirena coil placed again with more success!
I began to feel much better in myself, and my periods eventually stopped completely at 38yrs. At the same time I had also began suffering hot flushes and noticed that my cholesterol was increasing - despite me losing weight and eating healthily. So again I went to see a GP at 38yrs of age – a male GP in his late 30’s, with just a hint of arrogance. He looked at me when I mentioned night sweats and menopause and increasing cholesterol – then, not very subtly, cast an eye over my tummy and said I should reduce my “central obesity” and look at the Keto diet!! With regards to the night sweats and my query regarding Peri-Menopause the GP responded that perhaps I should see a female GP for this. I went away suitably shamed – and didn’t go back to the GP despite struggling considerably with lack of sleep due to hot flushes, restlessness and discomfort.
Then Covid happened. I went back to the GP - a year later than I should have - for coil change, I mentioned my concerns again. This time blood tests were supposed to be done to check sex hormones – but some crossed wires meant the phlebotomist didn't request the right tests. A year later at 43 I went back for the tests again – which showed I wasn’t just peri-menopausal, I was considerably post-menopausal. When I saw the GP – she was so apologetic that this had been missed, especially as the unexplained year on year increases in cholesterol I’d had should have been a red flag for the previous GP’s to investigate menopause! The GP advised me that I should have been taking HRT as I was so young at Menopause, and encouraged me to consider it. The Mirena had already protected me to some degree from certain cancers, but it was Oestrogen supplementation that would help protect my bone and cardiac health, the GP proceeded to explain. I was also referred for a bone health scan, which revealed I had become Osteopaenic - which means my bone density was below what it should be, and increased my risk of bone fracture. This is very important, as a person with Parkinsons, I am more likely to fall. There was no delay in me making sure I had oestrogen supplementation, to go along with the Progesterone the Mirena was giving me. I have to say - starting HRT helped me immensely. It took a while to get going though! My sleep became much better, going from very bad sleep to just bad sleep. Hot flushes and restless legs became much improved too! I didn’t do any motor tests, I belatedly realised it would have been interesting to see if the motor function had improved post HRT too.
It did not pass me by that I was diagnosed at about the same time I completed Menopause, so I began to wonder – just like menopause is linked with increased heart disease presentation in post-menopausal women – is there a link with early menopause and PD. Would taking HRT improve Symptoms? And so I eventually began my sleuthing – trying to find out if there was a link. But, when I started looking, papers were far from clear on the matter. There were few research studies, and even fewer that had yielded statistically significant results. There were conflicting reports re: whether early MP is associated with an uptick in Parkinson’s diagnosis or not – helpful huh? There is no doubt that more research is needed to investigate the neuroprotective effects of Oestrogen and whether body identical Oestradiol supplementation could offer ongoing neuroprotection, in the face of declining natural Oestrogen during the peri/Meno and post-menopausal years. This is what I am interested in researching … and when I take Medical Retirement, it is where I intend to aim my focus.
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