First, I want to extend a big thank you to the Parkinson’s foundation (previously PDF) who were at the forefront of the issues that really matter – gender differences in PD. They began a Women in PD initiative a few years back which I had the honor to be part of. Over the last year they held 10 forums across the country to outline the requirements and recommendations for women living with PD. Although, unfortunately I was unable due to health reasons to attend their last session help last month in Houston, I am happy to say that thanks to you who have bought my Parkinson’s Diva book and the many women ardently fighting to have better quality of life along with more research and better treatment guidelines for us women great strides are being made as I write this.
As with any other disease, when dealing with women of childbearing age the social, economical and medical needs are completely different from those not in this subcategory. Aside from this aspect Parkinson’s disease when it affects women has a different flair and tone compared to similar age male counterparts like migraines and strokes. The treatments need to be tailored to the needs of the patients taking into account that course of the disease most likely will be different to that of men of similar age.
What we know
#young women with Parkinson’s take longer to be diagnosed than young men with PD
#women in general have more dyskenesias but is dependent to some extent on body habitus. So more plumb women like myself have lower risk of having dyskenesias( never thought i would be happy about my full size figure!).
# women are at greater risk of osteoporosis and therefore fractures (again weight plays a role- the heavier the less likely to have osteoporosis).
#women especially young present with more non-motor symptoms making it harder to diagnose taking longer for most women with PD to get diagnosis from same doctors treating similar age male patients.
#hormones do play a role in symptoms – PD medicines makes period worse and period makes symptoms worse.
# many symptoms of women with pd are similar to hormone fluctuations caused by menopause thus many doctors unknowingly blame menopause for the symptoms rather than PD or fluctuations with PD medicines or even side effects of pd medicines(e.g. diaphoresis).
#women are more likely to have strokes and vascular problems
#because there is a link between llrk2 and migraines as well as migraines with aura being a risk for PD. Many more women with PD suffer migraines which are often exacerbated by medications as well as neck rigidity, dyskenesias, and torticollis.
#women have more side effects to medications in general especially nausea as well as weight gain and fluid retention which contributes to increase blood pressure and risk for strokes.
# DBS causes more weight gain issues in women.
# women with PD have more UTI’s worsened by many of the medications which in turn can cause more mental status changes
#women with PD may have greater risk of breast cancer
As we wait for final guidelines to come out from initiative
All women with PD and any other medical problem should discuss with their physician the interaction of medication in regards to above – should have a gynecologist/urologist to help avoid/ prevent recurrent infections.
take supplements or treatments necessary especially since vitamin D can be deficient in PD to avoid or decrease risk of fractures due to osteoporosis and find ways to increase daily activity. keep control of blood pressure which in my experience especially Hispanic women like my self tend to run high.
Be proactive- take smaller doses especially if thin.
be informed and find support – and voice your concerns.
A special thank you to Ronnie Todaro, Megan Feeney, Dr. Allison Willis, Sharon Krischer and to everyone that served in women with PD talk forum.
if you not had chance to read Parkinson’s diva- you can still get your copy at amazon
all rights reserved Maria De Leon
Today, researchers are evaluating an investigational drug that focuses on the earliest stages of Parkinson’s disease that may potentially offer a new option for recently diagnosed patients.
If you have been recently diagnosed with Parkinson’s disease, you may want to consider a newly opened study. It is evaluating the safety and potential efficacy of an investigational drug that targets alpha-synuclein (α-syn), a molecule associated with Parkinson’s disease. The investigational drug is being studied to see if it may potentially help to slow or reduce disease progression.
For people who:
— Have been diagnosed with Parkinson’s disease in the last 3 years
— Are 40 to 80 years of age
— Have not received levodopa in the last 12 weeks
Learn more! #sponsored #cureclick
Learn why I’m talking about Clinical Trials – we are closer than ever to deciphering this complex disease ..but even if we don’t discover a cure at worst we would have developed new treatments to make living with PD a thing of the past…by becoming as close to normal as possible.
Just in the two decades i have been involved in this field i have seen so many advances and people like you and me can have fruitful productive lives even when afflicted with PD.
today at least 3 new drugs are in the fda approval line due to be released within the next 6months to a year and perhaps sooner. but there are also many more on the works like this new #Parkinsons disease clinical study which is in the process of evaluating an investigational drug to see if it may potentially help slow or reduce disease progression. if you are interested in finding out more or think you like to participate and add your own grain to the cure go to the link below
@maria de leon 2018
“However, difficult life may seem, there is ALWAYS something you can DO & Succeed at.” Stephen Hawking
I know that many people, including myself, often can get extremely frustrated with ourselves not only for having to deal with a myriad of symptoms which often times wreak havoc in our lives; but at times we feel betrayed by our own physicians who appear impervious to our own misgivings and difficulties.
As a former physician and now chronically ill patient, I have been thinking about these issues more often lately as my disease, rather general health, has seemed to spiral downward at a faster rate. I have been trying to reconcile my own feelings of disappointment with the turn of events in regards to the complexity of my own health problems which have been compounded recently by a feeling of disillusionment with some of my caregivers.
In order to come up with sensible explanations to my sudden disenchantment with my friends, colleagues, and care providers, I had to step back from myself and try to see things objectively not an easy thing to do – I assure you.
I am most objective when I am in physician mode, so I reverted to this role and considered how I as a doctor would treat me as a patient. The fact is that all my physicians are doing EXACTLY, for the most part, what I as a doctor would do!
So, why have I felt of late that they don’t seem to care or get what I am going through?
I have heard this over and over from many of you, doctors are just not spending time talking to us about the important issues which seem to be running our lives and robbing our happiness and drying our families joy?
I am certain that at times some of my patients might have felt this as well and might have sought other physician’s care. Yet, I assure you that every patient’s well-being was at top of my list.
So why the seeming disconnect? With them and now with me- as a patient?
Well, let’s take a look at this illness a bit. Although in existence for centuries, Parkinson’s as we know it was given a formal name only a century ago. However, it took another 60 years for scientists to discover the implication of a chemical known as dopamine. From that time on until very recently the main treatment consisted only in replacing this wonderful chemical without which we can’t move, function, or even think straight.
With the advent of levodopa, patients could again move, think, dream, and enjoy life for a while until dyskinesias (uncontrolled involuntary movements) began and/or finally they succumbed to a bedridden life unable to swallow or barely move. We as doctors had completely changed the course of the disease. This was a miracle! Then came the side effects. So, I recall spending the majority of our time trying to manage dyskenesias -breaking medication doses into 1/2; 1/4 and asking patients at times to take these medications every hour around the clock- pure insanity! All in hopes of provide smoother delivery to minimize ‘off’ states.
We had no time to notice anything else. Like in a battle field where there are thousands of wounded soldiers all clamoring to be saved, the foremost importance is making sure they survive even if it means amputating some parts to salvage the whole. So we have spent the last several decades making sure people live and survive by trying to prevent falls, being bed ridden, frozen, drowning on their own saliva or having pneumonia.
No one really complained since like the movie Awakenings everyone seemed happy to be able to move once more. But life was never perfect there were other problems we physicians as well as patients were aware of but with lack of treatments for these we managed the best we could. And in reality since the majority of patients we were treating at the time seemed to be elderly (the older I get this age distinction seems to become hazier), most in fact died of other medical causes because they never had time to go through all the stages, this being a slowly progressive disease developing over 30 years’ time.
So now that we have given patients a better quality of life with the myriad of new medications and surgical treatments available to us, we realize that the care is not perfect. This is compounded by the fact that we appear to be having increased incidence in younger onset PD (this still remains to be determined). Now that the life threatening issues have been controlled for the most part we have a grand task of getting people to not just survive but actually thrive once more.
This is where we currently stand, as physicians we are just beginning to grasp the challenge of giving a person back their wholeness while the patient (me and you) realizing the enormity of our deficits want to feel whole instantaneously.
Yet, none of us has a magic one and medicine is still one step at a time (moving at times at the pace of a snails crawl) following the creed of “do no harm” first.
So I realized that instead of being frustrated I should be grateful that 12 years into a disease I am fully independent and capable of having a full life and rather than thinking that our physicians are not caring or acting fast enough for our satisfaction we should find ways to help them help us.
So, now that the mud is beginning to settle, we are getting a clearer picture of the complexity that is PD. The good news is that the majority of non-motor symptoms actually have treatments. The bad news is that we can’t fix all at one time. This means picking your battles (the 3 most important at a time) and tackling one by one. Stay in constant communication with your physician, means regular appointments every 3 months- more often if needed. Write down your problems, look for patterns, ask questions, have a stake in your illness- this is a race not a sprint. This requires a change in life style. Just because we take some pills we can’t expect to be better without us putting some work as well- like stretching, moving, sleeping well, watching what we eat, and staying mentally active. Believe you me it’s a lot of work on a daily basis, but if you want to be around ‘til the next breakthrough in science this is what we have to do.
After pondering these things, I feel much better about my care and my life. I hope this helps you as well. There is a big bright future ahead don’t give up know – give your doctors a chance – most really do care but are simply overwhelmed at the scale of the iceberg ahead. Help them chip at it for your own well-being.
all rights reserved by Maria De Leon