There are a few things that I have learned over the years living with and treating patients with Parkinson’s disease which are bigger predictors of prognosis and over all well –being, in my opinion. We as physicians tend to ask general questions that often times elicit a ‘yes/ no’ answer but does not give insight into the challenges a person living with Parkinson’s or any other chronic illness really experience on a day to day life. In fact, how we cope and what changes we have make in our lives to continue performing independently, maintaining our social circles and living a full life speaks volumes of what ids truly ailing us.
Here I will discuss two issues that have high impact on our daily lives as well as are big indicators of our future well-being if we pay attention to them carefully and discuss with your physician in a timely matter to correct the problems.
1. Have you had to start driving differently like I have?
For instance, our doctors may inquire if we are still driving? In my case, I may say ‘yes’. But that’s not the end of the story. My driving habits have been severely altered as of late not being able to drive outside of town. For day to day activities, I have no problems. Yet, I can’t be relied upon for long distance traveling. Further, I tend to only drive on left lane because it’s much easier for me to turn my neck to the right than to the left due to dystonia (torticollis) and nuchal rigidity. Moreover if I need to look left, I have to turn my entire body to left (hard to do when sitting still much less going upwards of 60 miles per hour). The reality is that even with turning my entire body I still have moderate limitation in range of motion of neck which can be extremely dangerous. Now, I also rely heavily on my mirror sensors – best investment yet! These provide me with an extra cautionary measure as well as security in my driving
2. Have you had a change in dietary habits?
Many people including myself can eat most consistency foods. However, many like me are also finding themselves slowly changing their preferences because it’s easier on their daily lives. These change in preference although not necessarily mandated by swallowing difficulties may improve greater well- being and quality of life by avoiding troublesome foods. Whether it be in the food consistency or in the types of foods preferred or avoided. Many of you will attest that is darn nearly impossible to eat with chopsticks when one is dystonic or shaky. Sometimes can be even more challenging to pull a lobster or crab from its shell. So although I thoroughly enjoy these foods whole, I often get them out of their shell unless someone else is willing and able to remove the exoskeleton. In my experience, these apparently insignificant alterations to consumption of food is by far the most common and most significant tall tell sign that something is amiss. If left untreated these small compromises can lead to a downward spiral rather quickly.
Another issues with food is alteration in food texture. Are you like me, a while ago when I was deteriorating, I found myself changing my diet to soft purée foods like ground beef, mash potatoes, casseroles, and thick soups to avoid choking. Even though I was not choking all the time nor daily. Yet, the times I did were so exhausting that it became easier to avoid all together along with the concern of ending up with aspiration pneumonia to add to my already extensive medical problems. (There are two reasons for choking with solids either not enough lubrication (dry mouth) or weakness of chewing muscles). Choking with liquids is a more ominous sign because you are at higher risk for aspiration.
On the other hand if you still are able to eat all types of food yet still losing weight because it takes 3-4 times longer than normal to consume a single bite without choking – or takes double the time to bring a single bite of food to your mouth-due to tremors, dystonia or slowness so that you either have to stop going out to eat with others or begin serving yourself smaller portions to avoid being last one at the table or last one to finish in a group- there is a huge problem that needs to be addressed. Sometimes you may compensate by only eating / ordering things that are easy to keep on a fork like Mexican food which is finger friendly or wrapped in cheese making hard to fall from a fork despite severe shakes.
The end result is either weight loss from poor nutrition, not enough food intake, or recurrent pneumonia’s causing secondary weight loss from illness.
As I mentioned before because these can be indicators of not only something amiss but usually portend bad outcomes. We must be constantly vigilant about our coping mechanism and discuss with our physicians, specially if it is in relation to dropping weight without meaning to.
Always Beware of weight loss. Two common causes in PD patients as i said before 1) poor food intake because of mechanical difficulties with chewing/ swallowing or 2)because of motor difficulties in cutting, preparing and bringing food to mouth.
Similarly, even if you are still driving if you had to make special adjustments /modifications to your vehicle to compensate for shortcoming or if only traveling short distances or only when accompanied by another, as I have had to do many times in past, you must notify your health care provider to make necessary changes to improve your quality of life especially as we near busy traveling season of much eating!!!
keep in mind that in my journey i have discovered that coping is a way
for me to embrace life not escape it ..so we MUST make sure our coping strategies helps us achieve a fuller life.
I would not want you to miss out!!!
all rights reserved by Maria De Leon
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