“May your joy be as deep as the ocean and your sorrow as light as foam.” ~ Unknown
Just because we have Parkinson’s and we may have a greater risk of developing melanoma from our medications as well as from our disease; it does not mean we should hide under a rock and not enjoy life!
So, as the summer fast approaches, we want to be ready! I know I am. My absolute favorite time of the year is summer, not just because it’s the season of my birthday which I am sure has something to do with it.
I relish the reinvigorating energy I get from witnessing a beautiful sunset on the beach or feeling the sand run through my toes as I walk barefooted feeling the waves wash away my worries and heal my soul. Nothing like feeling the breeze of a cool wave as it splashes on our face as the shore sends a thousand little particles of salty water combined with musky scent of the hot beach, along with sun tan oil mixed with the fruity drink in our hands to titillate and awaken the senses. In an instant we are transported to a time when we were just ourselves, No inquisitions, No struggles, No loser’s only winners.
The sea does not judge it only listens and returns what we thought was lost, our sense of awe, wonder and belief in something bigger than ourselves.
But, in order to fully enjoy without worry of damaging your skin: I recommend these simple tips.
- First, make sure you use proper sunscreen. No natural products because they are not safe to stop damage from UVA & AVB rays.
- Second, Make sure that the sunscreen you choose contains ingredients like Titanium Dioxide, or Zinc Oxide. The SPF 15 or higher is only for UVB protection; A SPF 30 or higher is recommended for those of us who have Parkinson’s because of our increased risk factor. There is no rating to tell us how good something is against UVA.
Best Way To Wear Sunscreen: (pictured are 3 of the sunscreens I highly recommend)
- Apply sunscreen at least 30 minutes before you go in the sun. Don’t forget to apply under your make up or get make up with SPF in it but most make up only has 15 so apply some extra under your make up.
- You may not get complete benefit because apply too little- use 2
tablespoons or 1 ounce to cover body.
- Don’t forget spots like feet, tips of ears, back of legs and your lips (use UV protective lip balm)
- Reapply at least every two hours and more frequently if perspiring or getting wet.
- Always wear sunscreen if you are out and about in the day – not just on sunny days. 80% of UV dangerous rays will penetrate the clouds even in cloudy grey skies- so wear it then too.
Protect your skin if not in the water-
Sit in the shade
Wear a hat -preferably a stylish broad brimmed hat
Wear sun protective clothing ( dark and tightly woven)
Avoid the sun between 10 am and 4 pm the highest peak of UV rays here in the States.
Curl up with a good book or catch up with your best friend or soul mate.
I suggest that this summer you take an away trip to your favorite beach and rediscover the REAL YOU inside!
Everyone have a terrific Memorial Day Weekend!
“Mothers arms are made of tenderness, and sweet sleep blesses the child who lies therein.” Victor Hugo
The happiest moment in any woman’s life is the day she finds out she will be a mom followed by the time she actually becomes a mom by holding that precious bundle of joy that God granted us. We as women learn then what true love really means and nothing in the world can compare or come close to that feeling. Yet, despite all of its joys it is also full misgivings with all of its of ups and downs as we learn to navigate the road of motherhood.
We as moms are always the first to rise and last to go to bed. There are a million things to do in the day to make sure our children are loved, happy, and safe, and well -fed. Parkinson’s and all we are our children’s moral compass. Our quiet courage as we struggle with Parkinson’s single handily while providing care and comfort to those who depend on us; this can leave any woman completely exhausted.
But, imagine that despite her limited energy and strength because of her chronic illness she is still willing to give everything to her children. We give the first of our energy and devotion to them wholeheartedly which leaves us with little strength, energy or time for ourselves. Today, let’s do something nice for all PD mom’s (and all mom’s who work hard 24/7). Parkinson’s disease state depends so much on the ability to rest, recharge, re-energize, and reboot so we owe it to our mom’s, ourselves, our families, and our children to do just that on this special Mother’s day; in which we are celebrating mom’s throughout the US and in other parts of the world like Mexico. So let us give our mom’s with PD (or ourselves) a nice treat in the form of a massage. Aside from helping to ease rigidity, pain, and dystonia symptoms it helps decrease stress and improve immune system. There are many types of massage but I prefer deep tissue massage and I think it works best for patients with PD. This helps get rid of knots, pain and eliminate excess water from tissue that tends to accumulate with PD medications.
A Swedish massage, is the most common type. This one accomplishes the same as the deep tissue massage without being as rough (as forceful) or as incorporate deep kneading into the tissue.
You can also do an Aromatherapy Massage which incorporates scented oils to relieve stress and sooth the senses. One of the most common oils used and one of my favorites is Lavender. Besides improving stress it also helps relax people therefore allowing them to fall asleep easier. Another essential oil I like is peppermint. Peppermint helps boost energy and improve mental focus.
Hot stone Massage is another form in which hot stones are placed in trigger points of body to relieve tension. I find this too painful and not beneficial to PD symptoms.
Reflexology is also known as foot massage. This type of massage involves applying pressure to certain areas and points of the foot that correspond to various body organs and systems. this form of massage therapy can be very relaxing and therapeutic for those with severe foot pain or those that stand on their feet a lot.
Personally, I find that a combination of these works the best for those of us who have PD. Either a Swedish or deep tissue (my favorite) with some aroma therapy along with some foot massage works the best. Every Parkinson’s diva should have one of these at least once a month to reenergize and refocus our mental energies to keep being the best mom’s we can be Parkinson’s and all!
Happy Mother’s Day Everyone!!!
“Life is better with a little sand in your toes.”
I love shoes. I have a whole collection of them. Being a physician standing on my feet all day long, I knew the importance of wearing sensible shoes and taking care of my feet. When I began having symptoms of PD, I threw away half of my shoes. I thought I would never be able to wear nice shoes again due to the severe foot pain I was all I needed was the right medication. However, I realized that the most important thing in order to enjoy life and continue wearing those nice shoes I love so much was and is foot care especially for those of us who have chronic illnesses that impact our ability to walk and stand.
Our feet go through heck keeping up with us and our PD so we MUST give them lots of TLC to maintain them looking and feeling soft, strong and pain-free.
Many of us with PD like me have foot pain from the very beginning due to dystonia, rigidity, plantar fasciitis, and even callus formation that develops from stepping wrong due to pain and dystonia; but eventually most of us may experience pain at some point due to disease advancing leading to cramping, neuropathies and abnormal distortions in the joint of our feet and toes due to dystonia’s and dyskinesia’s.
Second, take a close look at your feet on a regular basis. Use a mirror to inspect the bottom of your feet looking for cuts, bruises, blisters, ingrown nails, and callus.
Third, make sure the shoe size fits- our shoe size changes as we age; measure with largest foot at end of day when purchasing new shoes.
Fourth, a lot of our PD medications can cause swelling as do aging so make sure that you prop your legs and feet up when you are sitting down; this helps circulation of your feet and thus maintain better health.
Fifth, do not walk bare-footed.
Sixth, Moisturize! Moisturize! Look for creams or balms containing Shea butter or cocoa butter. First, exfoliate. I like using amope pedi for exfoliation of dry skin of feet; it is easy to use and inexpensive; you can find at Amazon or any drug store including Wal-Mart and Target. you can always use a pumice stone if you like but this requires a lot more coordination and fine motor skills. But, before you exfoliate soak your feet in warm water made of Black tea for 15 minutes to soften skin. Make sure you always dry your feet thoroughly even between your toes to avoid fungal and bacterial infections as well as bad odors.
Seventh, Get support- this means if you can’t tend to your feet on your own and trim your nails then seek a podiatrist. Also, he/she can help give you get insoles for your shoes to make them more comfortable and feet feel less painful. These professionals can also remove those pesky calluses which you might not be able to smooth out on your own. Other support includes your neurologists, who can do Botox injections for pain (and wrinkle free toes 🙂 ) but can also send you for orthotics to be made if your toes and feet are dystonic and need added support besides medication while referring to other ancillary services like PT, OT to aid in pain control and foot care as well.
Eight, wear sunscreen to the tops of your feet with a SPF of at least 45 when wearing open sandals/shoes because we are already predisposed to melanomas with PD and our feet are not immune from this.
Ninth, make sure that you alternate shoes especially important to avoid pain in feet because of our gait abnormalities may lead to wearing of shoes in a single area creating more imbalance and aggravating callus and dystonia.
Tenth don’t Forget your Toenails!
Getting a pedicure is a lot cheaper than any therapy plus a lot more enjoyable. if you must do it on your own, I suggest Opi fast dry colors because a lot less difficult to mess up even with severe tremors and dystonia. But first add some vitamin E oil to your toenails because the combination of medications and age can certainly due a number on our nails causing them to become brittle.
Now, your feet will feel rejuvenated, soft and strong at the same time ready to face another day with PD.
@copyright 2015 all rights reserved Maria De Leon
“Always act like you are wearing an invisible crown.” Unknown
It is tough being a woman with Parkinson’s balancing passion with patience given the fact that, try as we might, some days we just can’t move faster than the speed of a turtle, our fine motor skills are shot and our rigidity keeps our wardrobe limited at times.
But, do we also have to give up our love of accessorizing when the occasion calls for it?
I say no…
Yes, we do have to make adjustments to our jewelry preferences and have to become more selective in what we wear.
I love jewelry and have a good collection of unique pieces given to me by my grandparents, my husband, and those which I have acquired over the years. However, much to my dismay a lot of my favorite pieces have had to be put away due to poor motor skills and inability to put on…
So, I was forced to learn the names of clasps types in jewelry so that I could search for pieces which would be easy for a PD woman to put on.
I no longer can wear any type of lobster, ball, barrel, fishhook, push button, swivel, ladder, slide, or spring ring clasps! these are usually too small which require extra fine motor skills!
But, I was determined not to surrender to my illness and lose my fashion sense simply because I could no longer use above…
Instead, I switched to necklaces and bracelets with magnetic claps. I especially love this type of closure on a nice set of pearls.
Another favorite of mine is a toggle clasp. These are great for necklaces and bracelets as well but have to have a large diameter otherwise you may find yourself struggling with these just the same. I prefer these for bracelets.
Besides pearls which I love, I now prefer wearing jewelry which are clasp- free.
For instance, you can get beautiful colorful endless necklaces which allow not just for an interrupted flow but can be easily maneuvered and placed over ones head even when shaking, stiff or have dystonia. these necklaces can be any material like cord or beaded or even pearls and because they are long sometimes you can wrap them multiple times creating different looks with same necklaces. The beauty of the cord necklaces you can also easily add and change pendants to fit the occasion or mood.
Then you have your slip-on bracelets which tend to be bangles or cuffs with a wide opening. The next type of clasp free jewelry great for bracelets is stretch. These are great because they easily adjust to fit your wrist. I love bracelets that are a combination of slip-on with a little stretch – this gives it a more polished look for fancier occasions plus not as binding to the wrist as some are. You may also find bracelets with large snap buttons which are great if you have severe tremors as are the slip- on ones.
Earrings have been my biggest challenge because try as I may I simply cannot put the cap on earrings that have post or studs. Forget ball earrings; the solution is switching to earrings which have long backs –French wire closure (variation of fish-hook clasp). Omega Back (kidney wire hook) earrings are quickly becoming my favorite; these have a hinged “o” shaped lever on the back near the bottom of the earring which closes over the post. Of course we have clip-on earrings.
ART by Ross Webb
It seems that as we get older we begin to forget faces, names, followed by pulling up our zippers then pulling our zippers down. However, I caution not to stand too close to strangers lest we forget which is our own zipper and pull someone else’s down!
As I said before, it’s hard being a woman keeping it all together balancing family, career, and Parkinson’s disease. We have a hard enough time getting up getting dressed and showing up on time where we need to be because our clumsy, shaky, dystonic hands make it difficult for us at times to use traditional garment closures such as small buttons. So in order to make our lives easier we have to learn to compromise and use our creativity and find garments which are both stylish yet practical to wear. My wardrobe has changed only in the types of closures I seek when I purchase my clothes without sacrificing style.
For instance, no more small buttons- they are a death trap. So here are the essential closures I have found that work for those of us who have Parkinson’s and other chronic dexterity issues caused by various illnesses like arthritis etc.
1) Buttons are a fantastic addition to any piece of clothing and can add personality since they come in all colors, shapes, styles, materials, textures, and sizes. The use of large buttons and fewer ones may be all you need to secure your beautiful garments. These can also work in combination with the next essential closure -ties!
2) Zippers are every Parkinson’s woman friend; I know that ever since I got diagnosed with Parkinson’s disease the number of zippers has greatly increased in my own personal wardrobe. Zippers are great on almost anything especially sweaters, and blouses. they are not as convenient in pants and skirts, unless they are placed in the front of the garment. There are simpler and easier ways to wear pants, skirts and dresses without zippers. The answers to these types of clothing are other types of closures which we will discuss next such as elastic, ties and even Velcro. Zippers also come in all lengths styles and colors. I prefer those with large pulls or tabs and those that are placed in the center of the blouses skirts or sweaters…side zippers I find are quite difficult to use especially in pants but can be helpful in putting on blouses if zippers are placed on the side in the bottom half of garment. I now try to avoid back zippers since they are also difficult to manage on my own particularly if the tab is small.
3) Ties are extremely practical and fast to get in and out of particularly for those of us who have disabilities or take care of loved ones with end-stage Parkinson’s disease or any other terminal chronic neurological disease. Although, tie closures may at times need a secondary closure. For instance, tie dresses like the ones above may require a snap button at the bust to keep secure. The beauty of tie closures is that they are extremely versatile can be seen in dresses, blouses, ponchos, skirts and many other types of garments from leisurely clothes to evening wear. I have a variety of these in my wardrobe …I particularly like the ponchos and skirts to have ties because they are easy to put on and pull off. Ties can be used alone or in combination usually with snaps as I stated previously.
4) Snaps are the best friends of any caregiver and person with neurological impediments. I prefer the larger snap buttons which do not require as much manual dexterity and can be pulled apart very easily. To make care giving easier in dressing those that have frequent bladder issues, wheelchair or bed bound back snaps are a great solution. These can be installed on dresses, blouses, women’s gowns, sweaters, t-shirts which are only but a few of the examples one could put this practical closure to use.
5) Hooks are another one of my favorite closures. They are stylish plus come in various sizes and shapes which give a unique look and personality to your wear. Couture garments usually come with large hooks. These is my favorites type of closure for outer wear clothing.
6) Velcro can be used on pants, shoes and even shirts which use VELCRO® brand hook and loop fasteners to aid those of us with stiff, shaky, dyskenitic fingers to dress ourselves independently. this type of closure can not only expedite the daily dressing routines but also make care giving easier when dressing someone that is extremely rigid. I love my new style of shoes which have Velcro. Also they are extremely practical, plus you don’t have to compromise style because of it. Further, if you have bladder urgency and frequency Velcro comes extremely handy if applied to pants especially to the garments of loved ones who are bed bound.
7) Elastic particularly in slacks or pants and skirts are extremely easy for woman with hand tremors, dystonia or dyskenisia to pull on. All of us with Parkinson’s should have a at least a couple of garments with an elastic waist. However, I must caution against wearing these solely because, as all of us who have worked in the medical profession know, it is extremely easy to gain weight when there are no constricting force around the waist to remind you to not overindulge!
@copyright 2015 all rights reserved Maria De Leon
“Intelligence is like underwear. It is important that you have it, but not necessary that you show it off.” – unknown
It’s tough being a woman.
The addition of Parkinson’s into our lives sometimes makes me feel like I am an enchilada short of an enchilada plate!
I can barely get dressed some days and I am supposed to wear what?
Well, I don’t know if it’s just that I have been too indoctrinated by western civilization or that all fashion, ‘make-over’ shows and “what what not to wear” tips usually start off with “the first thing a lady needs is a nice bra to support the girls and make you feel like a sexy woman!”
Although, there is still a debate today as to whether bras are really needed, I am a firm believer of the latter- a bra for every occasion to match our outer clothing!
But sometimes when you want to be naughty or feel extra special, an extra lacy or sexy bra will do the trick even if all you are wearing is a track suit. The problem is many of us with Parkinson’s disease and other impaired mobility illnesses have simply given up wearing a bra because of the difficulties in getting them on.
Well, as someone who not only treated many PD patients and now lives with the same I understand firsthand how cumbersome it is to even get out of bed at times even more so to put on garments that require a lot of flexibility and great deal of dexterity.
Yet, it makes me so sad and frustrated to hear beautiful vibrant women with PD give up on wearing bras. Because what I am hearing is I am giving up on being a woman and dressing up for the occasion to simply show up!
By no longer caring or bothering, we are unwillingly admitting defeat and letting Parkinson’s win. What we are essentially telling our brains is that it has no control or power over the situation we are in.
But, I am here to say that we as women have many options besides going bare unless you have always done this prior to PD.
There are other alternative garments or ways of putting on a bra that will allow us to look and feel feminine at the same time empower us as we show Parkinson’s who’s boss.
But, first you must always consult your physician regarding this problem. Since the reason we might not be able to put on a bra is typically one that can be addressed and corrected by our healthcare provider via medication adjustment or physical therapy in over 95% of the cases.
However, if after a careful evaluation and medicine adjustment no improvement in mobility occurs:
Here are some ways to help putting on a bra when dexterity fails:
The first recommendation is a technique known as ‘Hook & Spin’ but make sure you first add some talcum to your waist to make rotation easier.
HOOK & SPIN STEPS:
- Wrap your bra around your waist and hook the closure in front of you. Make note of the location of the bra’s label (e.g. side seam, back).
- Turn your bra clockwise until the front of your bra is centered.
- Bring bra up so that the bra band is resting directly under the breasts.
- Slip the shoulder straps over your shoulders.
Some bra alternatives:
There are many healthy alternatives for dressing bra -free (some women prefer the positive term “bra- free” rather than “braless” because they say women don’t really need to wear bras). However, going “braless” or “bra-free” usually works only if you have small breasts. Otherwise, I recommend trying some of these alternatives.
- Camisoles are inexpensive, and there is a huge variety at many department stores with variety of fabrics and weights, from silk to cotton. Recommend cotton or those made of breathable material (i.e. cotton/lycra) because let’s not forget we sometimes tend to perspire a bit more than usual due to our disease. Find thin and/or cropped camis for summer but look for ones that have padding or bust panel in breast area. Camis are seamless, comfortable products.
- Shirts with pockets over both breasts; extra fabric layer conceals. Loosely fitted tops.
- NuBra is just two adhesive cups that you place on your breasts. They keep the nipple from showing through clothing, if that is a concern.
- Front close/racer back bralette (this is a bra without wires or molded cups on par to sports bra but without firmness to hold you in place). I love these bras when I am extremely stiff like when is very cold outside.
- Can wear a bandeau- (a strapless bra that covers the breast) which many women with mobility issues have sworn by this.
Remember though that a nice ‘lacy’ bra, bralette, or Colette (unlined lace full cup bras) is always a psychological pick me upper especially if you spend a lot of time with jogging suits or stretchy pants as many of us do due to lack of mobility, rigidity and bladder issues which keep us tied up close to bathroom.
Any woman will swear by the fact that a simple act of putting on a pretty lacy bra is sufficient enough to boost mood and confidence. No one knows what you are wearing besides you but that’s enough to put a spring in your step particularly if you are able to match with lacy panties. This simple act can be a powerful mind and brain booster.
Art by Ross Webb
@copy right 2015 all right reserved Maria De Leon