“Half of joy of life is in the little things taken on the run..so let us keep our hearts young and our eyes open that nothing worth our while shall escape us.”
Here we are again, like in olden days, gearing up once more for a busy and stressful season especially for those of us who live with chronic illness. Ironically, this is the time of year where peace, joy and harmony are frequently spoken and shouted from churches and corners alike. Yet, harmony can be an elusive word when family is concerned but even more so when the needs of the few superseded the demands of the many.
Every family has some sort of tradition for celebrating the holidays. Whether elaborate or not if it involves traveling, preparing meals for larger than usual group, shopping, sharing space, socializing in loud environments it will require some planning ahead to make the best of your time with family without letting illness interfere too much robbing you and loved ones of quality time.
In order to avoid losing heart and feeling like you might just want to skip holidays all together, I have devised a few tips to help you retain your joy and have a good time with faithful family and friends once more.
Have a plan
This means you have to be realistic about your health and family situation. If traveling is difficult ask members of family to come over to your place instead. If this causes too much chaos or is not feasible for others to travel either then consider gathering with close friends or a smaller gathering with loved ones. If you must travel allot enough time to travel and take breaks or break trip into segments to make it easier.
Growing up Hispanic, I certainly know the value of a good nap. I find that laying down for half an hour to an hour especially when traveling or have packed days serve to reboot and re energize the body and mind even if you don’t fall asleep. Find a nice cool and dark place. Helps if you bring your own pillow and blanket preferably a heavy one (I love my faux fur blanket- the weight of it tricks the nervous system into thinking that you are being hugged thus releasing feel good chemicals and relieving stress). Let family know that you need to be excused for a while so that you can have strength for the remainder of the day. This means no electronics! Pretend you are far away from civilization and have no access to any gadgets. Allow your mind to drift.
As most of us that live with chronic illnesses will attest to the fact that mornings are usually not our best time. So don’t kill yourself trying to do everything in the few good hours of the day. Ask others to chip in either by helping to prepare meals, help with shopping or wrapping, being in charge of itinerary.
Do things that make you Happy
If having too many people around give you anxiety, go for smaller gatherings and have furniture rearranged as I just did so there are various cozy sitting areas for intimate conversations around the house so you don’t strain to hear and company does not strain to listen to what you are saying either. Play games together (fun entertaining game that also stimulates mind is Skategories, cards, etc.), bake together or decorate Christmas cookies like in an assembly line or siting around the table so you don’t have to do everything alone but still participating. Open up a dance floor if the whim arises and make up your own moves even if still wheelchair bound. Instead of going out to the movies gather around friends and family for at home movie night.
Rethink the Big Picture
Before you commit to anything, ask yourself what are the pros and cons of doing whatever it is you are attempting to accomplish? Are there shorter ways to accomplish same thing like buying on line rather than having to drive all over the place. Will these activities give you joy or cause you to be more worn out? Having a clear purpose in mind can be extremely gratifying as well as help you reduce stress and burden brought on by PD leaving more room for the memories…
So I say to you, “Have yourself a little Merry Christmas now…”
Feliz Navidad Joyeux Noel God Jul
Merry Christmas Feliz Natal
Meri-kurisumasu Buon Natale Frohe Weihnachten
For another wonderful joy filled year together….
Love to hear how you keep your joy through the holidays….
All rights reserved by Maria L. De Leon
song by Nancy Lamott- Have yourself a merry little christmas!
“There is simply no medicine that will cure what happiness can’t cure.”
~ Gabriel Garcia Marquez
In a time when marriages end faster than we can say “I do” how to make a marriage work in the midst of living with a chronic illness is no easy feat.
Establishing a balance with your partner can be a daunting task. After living with a chronic illness for more than ½ of our marriage, I have learned a few tricks to make things work better and keep the flame going. This requires a great deal of love, patience, forgiveness, and mutual respect.
We must think first of marriage and romantic relationships as an empty treasure chest. Here we put for safe keeping all our goals, dreams, desires, expectations and most prized possessions that speak of our past and our future. But, we can only draw from it what we have made a point to store like congeniality, love, gratitude…
Every relationship is made of two people- keep that in mind as you try to navigate the muddy waters of keeping romance alive when you or your partner feel like you are drowning.
The expectations vary according not only to the stage of the relationship newlywed vs. veteran but equally or even more important (to finding ways to maintain the flame alive) is the stage of your disease.
Also remember that men and women handle bad news differently. In general men tend to want ‘to find a solution to the problem’ of PD even when there is none.
If you guys recall the movie ‘Love and other drugs’ in this story of a man who falls in love with a woman with young onset Parkinson’s ends up in medical school – his way of trying to control the situation. He also insists on enrolling her in every available trial. This type of thinking can lead to many problems down the road starting from the point that focusing all of the attention on a loved one and neglecting one’s self only leads to resentment and burn out. Plus, because every person is unique sometimes less is more as in my case. I have a very small threshold for maintaining my biological equilibrium sometimes even the slightest change can lead to severe disruption and drastic consequences. Hence both my husband and I as well as my physician have learned to be very cautious and not overly aggressive in my treatment.
Similarly, when we concentrate in a single aspect of a person’s life like their illness we reduce that person essentially to that characteristic – in this case a patient.
Once your partner equates you as a ‘patient’ or person who needs to be ‘cared for’ particularly if long term, the romance tends to go out the window and many times if there are minor problems these can be magnified leading to resentment on both sides and even separation.
To avoid falling into that trap, I suggest that both parties maintain their own independence, their own goals, and dreams as long as possible particularly in the early to mid-stages of the disease when a person with PD is more than capable of caring for themselves.
If self-care is needed try to incorporate and ask for outside help from friends, family, etc. I am not sure if any of you remember seeing a documentary on 20/20 a few months ago about a couple dealing with Alzheimer’s disease. The documentary involved following a woman who had been recently diagnosed with dementia. At the beginning of the piece a few months into diagnosis of the wife, the husband was 100% committed to taking care of her no matter what and refused any time of help. However, as the documentary went on over the course of the next 5 years (not very long), the husband became more and more distraught, depressed, bitter and utterly despondent. He wanted nothing to do with her care which ironically was now the time she needed him the most. She had reached a stage of complete dependency.
Don’t let this be you and your loved one. When you suffer so does your loved one. Their well-being is dependent on your own well-being so save your energy and strength for the right time and focus and making memories together and enjoying life together for as long as possible.
After, a decade of living with PD and many ups and downs, my husband and I have worked hard at keeping the romance as well as our own goals and independence by not allowing him to become my care giver or even care- partner in general. However, there are times he has to assume this role briefly when I am facing new serious issues when I am simply unable to care for myself such as when I was facing possibility of new cancer recurrence. He was with me every step of the way not necessarily as a care partner but as a supportive spouse.
The majority of the time, I go to doctor’s visits alone or with a close friend. I don’t ask him to come with me to PD conferences or support group meetings. I encourage him to have his own support group and spend time pursuing his own goals. As with all relationships, there must be a give and take; sometimes I take care of him and other times he takes care of me.
I try to maintain my role as wife, mother, friend and lover. I understand that it is impossible to continue seeing someone as sexually enticing after spending all day or week doing things that the other should be able to do on their own such as feeding or grooming.
However, that is not to say that with each stage intimacy can’t still exists. Not only do we require as couples physical, sexual but also emotional intimacy. It is important to spend time alone as a couple doing whatever brings joy and unites the couple. Intimacy must and should be maintained even in the absence of sexual bonding. In fact as a couple grows and develops particularly in the face of chronic illness is the emotional bond that sustains a marriage or a relationship. In the face of adversity we either crumble or we become stronger. I am glad to say that in many ways living with PD has made my relationship with my spouse much stronger.
The key to living well with a chronic illness is open communication!
• Start with breaking down barriers- sexual/emotional/physical: important to recognize that sexual intimacy does not only mean (vaginal) intercourse. This is of the utmost importance because many women with PD suffer from decrease libido, vaginal dryness, and trouble achieving orgasm while men have erectile dysfunction, and trouble with ejaculation. Talk to your doctors about these issues and communicate with one another to find ways to still enjoy each other.
• Find a way to reconnect (what did you like to do as a couple prior to PD?)
• Talk to your doctor about sexual issues and problems with performance as discussed previously- there are many treatments for these.
• As a partner in the care of a loved one – try to see things from their point of view and vice versa.
• Allow for personal time and personal growth- this is a life changing disease which you will have to learn to live with if you want to be happy
• Look for new ways of doing things
• Find pleasure in simple things like taking baths together
• Spend time simply touching – power of a touch is immense- a good hug can be just as rewarding
• Find outside help to do chores
• Don’t go at it alone (recall documentary), this is a sure way to burn out and become depressed, desolate and resentful.
Just like parenting one must learn to pick the battles when to step in and be concerned and when to let them handle their own problems and issues. Pace yourself this is a marathon not a sprint race.
All rights reserved By Maria De Leon
Today, I though I would talk once more about the dreaded D- dyskenesias-
We have all seen patients and heard stories of the horrible life of having dyskenesias – many are so terrified that they avoid taking medications altogether.
Are all involuntary movements dyskenesias? No! some parkinson’s patients along with parkinson’s plus and parkinsonism patients can have other types of movements like
- chorea– irregular, spasmodic, involuntary movements of the limbs or facial muscles, often accompanied by hypotonia. This can occur as a result of stroke, tumor, infection, benign, part of Huntington’s chorea which may also develop parkinsonism after treatment.
- myoclonus– spasmodic jerky contraction of groups of muscles. this can be benign, can be seen occasionally in parkinson’s patients, also as a result of stroke or nerve damage. Seen in the palate with people with migraines sometimes.
- alien -hand– A clinical finding in which there is awkward asymmetrical involuntary movement of the hand or limb, which is interpreted by internal sensors as ‘alien’; the patient’s limb moves as if of its own volition. This is characteristic of CBGD- corticobasal ganglionic degeneration.
- seizures- like focal seizures – which can be caused by strokes, tumors, mithochondrial diseases, other genetic disease like DRPLA
- tardive dyskenesias– abnormal movements due to anti dopamine medicines or withdrawal of antidopaminergic meds, also seen with various medicines like lithium, depakote, reglan, phenergan long term intake
- tics- not seen in PD
- RLS– are part of parkinson’s and other parkinsons syndromes like MSA – these have more rem and periodic leg movement of sleep
- -ataxia- wide base gait, slurred speech, incoordination of eye and hand movements. machado’s syndrome, strokes, cerebellar disease, ataxia syndromes, dentatorubropallidoluysian atropy (DRPLA)
- hemifacial spasm- involuntary contractions on one side of the face
- painful legs moving toe syndrome
As you can see there are several abnormal hyperkinetic (unwanted or excess) movements disorders some of which are symptoms and whole diseases by themselves. any of which can occur in any one given individual but the key is the timing and relation to other symptoms and medication intake. also important to note that only idiopathic Parkinson patients develop dyskinesias.
If you have any of the above plus parkinsonism especially if not responding to medication, have more confusion at early stage, bladder problems or even balance issues especially if gait is wide – you are NOT dealing with idiopathic Parkinson’s disease and warrants further evaluation. also of importance if it seems there is a strong family component or heredity to these movements most likely NOT Parkinson’s disease.
If Parkinson symptoms began after being on anti-psychotics, anti emetics (nausea medications), sleep aids, lithium, or depakote then you don’t have typical PD most likely.
Now let’s say you got diagnosed with PD and were responding well to treatment and then suddenly one day you just began having abnormal involuntary symptoms on one side of body or just one limb and is constant or lasts only a few minutes- this is NOT dyskenesia until proven otherwise need to rule out seizures, strokes and tumors. Especially if you have only been on levodopa a very short time.
So okay in the old days the majority of people got dyskenesias and they had to live with them most likely, that’s because we had a very limited number of treatments and the best medicine was levodopa so very soon after diagnosis EVERYONE was on levodopa. What happened when patients symptoms advanced? Since we did not have better treatments we simply kept increasing the dose…asking patients to take more and more often as the receptors got over saturated subsequently having fewer and fewer positive effect only increasing the side effects..dyskenesias among others.
At the beginning of my training it was not uncommon to ask patients to take levodopa every 2-3 hours and asking them to take 1/2 and 1/4 tablets at a time- However because they have carbidopa we were never able to make the doses quite right. when all else failed before the pallidotomies, thallidotomies and hospitalized people for “drug holidays”. But fortunately in the mid 90’s things started to turn around for people with parkinson’s with the addition of dopamine agonists, then came Comt inhibitors, DBS and mao inhibitors. When I was in practice, I only had a handful of patients who took levodopa every 3-4 hours – and that was because they were already on Comtan and could not take inhibitors, could not do DBS and also were already on MAO inhibitors. But when the neupro patch and Stalevo formulations came out so many of those patients who took levodopa more than 3 times a day were able to cut back hence reducing the occurrence of dyskinesias or ameliorating them completely. As i have said many times before there are so many drugs that most of us should be able to find the right combination without overdosing and the KEY to preventing and decreasing these is taking small doses of various medications – a cocktail, kind of like the mambo #5 song- a little bit of Mardi Gras.. a little bit of Rita, little bit Erica.. a little bit of you.. so a little bit of levodopa, a bit of dopamine agonist, a bit of mao inhibitor, a bit of amantadine, a bit of comt inhibitor and a lot of you. if you are unable to tolerate meds and that’s the reason you take more than 4 doses of levodopa or because of cost of the others ..first comtan and Stalevo generic – although, I hate generics..generic stalevo which comes in 75, 100, 175, 200, and 225mg could not only solve a lot of these problems but also make it easier on your wallet and stomach because would be taking fewer pills.
Even after 10 years of PD, I take Parkinson’s medicines only 3 times a day- only when i travel and give lectures do I sometimes take 4 times a day – because if i need more i can substitute the rytary or stalevo for a higher dose. The other option for people that have busy active lives or cant tolerate medicines or have to take more than 4 times a day is to discuss with physician about surgical procedures like DBS. You should not be intimidated about taking levodopa because unfortunately not only is it the gold standard but it is so for good reason- because dopamine is the center of our being! dopamine agonist can only go so far in producing dopamine in the brain we need the actual substance to help us feel like ourselves again. i have discovered through the years of having the illness myself that is the lack of this which makes us forgetful, feel like we don’t care, feel anxious and even depressed to a certain point because serotonin is also needed for the latter. so by shying away we are doing ourselves a huge disservice. this is the reason people keep adding more and more dopamine (levodopa) when they start feeling anxious – increasing the dopamine level is the right track but NOT by adding more levodopa (sinemet) because what happens if you keep pouring water over a glass that is already full? the excess is simply going to spill over right! but if you are still thirsty need more levodopa since you cant fill a glass more than when is already full you simply drink more glasses of water- in essence this is what we try to do replenish the dopamine by circumventing the saturated receptors so we block its degradation ( mao inhibitors and comtan) so it last longer, we add substrate at the beginning of pathway to increase the production so when that dopamine blocking receptor falls below level you have more on the way ( another glass coming).
I hope this helps illustrate the need for early treatment with levodopa and also to consider taking more than one type of medicine to help keep you active and with fewer side effects. The best way to help yourself when already having dyskenesias is sketching the pattern, (when, how long, predictable, times a day?); if there is one medications can be adjusted and/ or DBS can done. If not pattern to involuntary movements they are random and unpredictable usually only way to treat is with surgical procedures.
@July2017 ALL rights reserved- Maria L. De Leon
1. Getting PD Diagnosis– this can suddenly make your heart stop beating – feels like you have flat lined until a helpful friend comes along.
2. Losing control of your mind. I get off the car to check the mail only to see my car rolling down the hill because I just step out without putting brakes or turning engine off!
3. Losing control of your body– food is flying in every direction except into your mouth as you try to remain calm and poise while attempting to look dignified.
4.Losing control of your bowels. no matter the age, circumstances, or location – this is enough to send one howling and expelling such frightful wailings that causes a chill to run down anyone within ear range!
5.Bladder urgency/loss– if you have to find a bathroom one more time after having gone 20 times in the last 30 minutes you must just flush yourself down the drain as well.
6.Pills,Pills, Pills- all colors, sizes and shapes- how can anyone person take so many medications and not pass out? where do they all go? you think they would fill ,up my stomach and I would not need to eat!
7.Visual disturbances: see playing children all around that no one else can see but the car in front of us that everyone else sees we cannot see well.
8.Doctors, doctors, doctors: I have my own collection of specialists for everybody part even when I look at the mirror I see one staring right at me!
9.PAIN!! EVERYWHERE PAIN!!– what a pain it is to be in constant pain- irritable and shout-y, I have become. Sometimes, I scream just to let out the frustration of being me with this disease.
10. People Judging: I can’t smile much so must be depressed; can’t talk loud must not have much too say/contribute; constant shaking and shuffling must be mentally challenged.
This Halloween I ask to NOT let your PARKINSON”S DISEASE SPOOK you and others-After all, “the only thing we have to fear is fear itself and perhaps a spider or two.”
Put an end to the fear by self -advocating and raising awareness for others that can’t do for themselves!
” I got bone spurs that jingle, jangle, jingle.” ~ unknown
Neck pain is an extremely common problem which afflicts all of us who suffer from Parkinson’s disease at one time or another. Also is a frequent source of disability for those who have cervical torticollis, and generalized dystonia independent of etiology.
The cause in both cases is increase axial rigidity (stiffness of any of the skeletal muscles that support the head or trunk). The neck joints are on a pivot which allow for sideways movements while the fact that the head rest on the atlas (named after Greek god “holding the weight of the world” while sitting in second vertebra called the axis allows for front and back movements. …
From the moment we awake until we go to bed these muscles are constantly being pushed in all directions. It’s no wonder that as we age they begin to deteriorate. Now add a chronic neurodegenerative disease like Parkinson’s or dystonia independent of cause and we are bound to have pain as our head and neck muscles are trying hard to compensate for abnormal posturing all throughout the day.
Pain is believed to occur in 30-50% (can go up to 85% when all causes of pain are taken into account) of all patients with PD. Although extremely common, pain remains under-recognized as being one of the non- motor symptoms of PD. The important thing to remember is that pain can appear any time in the course of the disease and even be the presenting symptoms of Parkinson’s, as it was for me.
Predisposing factors for pain in Parkinson’s are:
- Gender- more common in women
- Duration of disease- worst as Parkinson’s disease advances due to increased rigidity of neck; but also to wearing “off” causing dystonia’s and motor fluctuations causing dyskinesia’s.
Pain is frequently under treated in the settings of both PD and dystonia but even more so in the Parkinson’s population, this is why I felt the need to talk about it today.
Although, pain in dystonia is more frequently accepted and recognized by MDS other physicians are not as attuned to this problem. Therefore, cervical pain in dystonia is still poorly managed and treated; even though 75% of patients with dystonia complain of some type of pain with 7/10 sufferers rate their pain moderate to severe. In fact when cervical dystonia sufferers were compared to PD patients in QOL (quality of life) they scored just as poorly. Yet, these patients scored lower in physical limitations than PD despite having higher physical function scores.
So, we have a whole population of over 1.5 million people living in pain and unable to get on with their lives and at times not even be able to do basic daily activities of living. This in my opinion is simply unacceptable and we have to be more proactive in our care advocating for better treatment. This entails going to the doctor as soon as pain begins and not wait so cause can be found and appropriate treatment instituted.
Poorly controlled PD & dystonia symptoms as well as over medication in PD patients is the number one cause for cervical pain in my experience often leading to severe spondylosis (narrowing of canal) and herniated discs of the neck.
- In women
- In the US 30/100,000> Europe 1-2/100,000
- Ethnicity- Jewish Ashkenazi
The key to successful treatment of neck pain in both groups is rapid diagnosis along with immediate, effective treatment to prevent acute pain from becoming chronic and affecting a person’s day to day living.
The reason for advocating rapid effective treatment is to prevent brain changes from setting in; with chronic pain the chemical composition of the brain alters as well as it remaps itself after experiencing prolonged pain. The pain center in the brain moves and expands out of the usual sensory centers (parietal lobe) to encompass areas of memory, and emotion causing people to become irritable, quick-tempered, and impatient. This is because chronic pain increases the threshold of our ability to focus (trouble multi-tasking) on every day activities. This transformation occurs because the brain’s area responsible for processing emotion begin to deteriorate at a faster pace than normal. We then expand so much energy trying to deal with pain that even a minor incident like being caught in traffic for 5 minutes can set us off!
This in turn can lead people to go in search of solitude manifesting as isolation creating a vicious cycle of depression, hopelessness and pain intensification.
Many years of experience have shown me that the best way to combat pain is to bombard it with whatever necessary to halt the process before it becomes an insidious recurring problem.
This is the one exception to the rule of more is not always better!
Unlike other symptoms of PD where we don’t want to just keep adding medications, in pain particularly those caused by nervous system e.g. radicular pain has to be stopped before the spine and brain have a chance to rewire itself?
Cervical pain treatment:
- The first thing is prevention! it is always easier to prevent than try to fix a problem.
- Second, treat acute pain still easier to treat with less disturbance of a person’s QOL.
- Third, treat chronic pain appropriately to break cycle.
Effective interdisciplinary treatment is necessary to efficiently reduce pain in our lives. This includes :
- physical therapy
- occupational therapy
- massage therapy
- Botox (dysport, myobloc)
- balanced diet
- sleep regimen
- adjust dopamine medications
- Neck surgeries when necessary or as last resort-e.g. laminectomies
- prescription pain medications :
- anti-seizure-e.g. Neurontin, Topamax, Tegretol, Keppra;
- anti-depression-e.g. Elavil, Cymbalta, Effexor;
- anti-anxiety-e.g. Klonopin;
- muscle relaxants-e.g. baclofen, dantrolene, zanaflex, relafen;
- topical anesthetics-e.g. Lidoderm patches, Flector patches;
- injection- e.g. steroids and Toradol or invasive epidurals, nerve block baclofen pump, Medtronic’s spinal cord stimulator (Neurostimulation);
- anti-inflammatories-e.g. Celebrex, Mobic, ultram, ultracet; and occasional narcotics -e.g. vicodin, hydrocodone (as acute treatment or short course to break cycle in chronic pain -do not recommend long term use because will worsen symptoms of PD and interfere with medications used for treatment of both PD & dystonia; should not be necessary in most cases if above followed properly)
Let the Sea Cleanse You
“When anxious, uneasy and bad thoughts come, I go to the sea, and the sea drowns them out with its great wide sounds, cleanses me with its noise, and imposes a rhythm upon everything in me that is bewildered and confused.” ~ Rainer Maria Rilke
It is important to realize that melanoma is one of the most common types of skin cancer which are prone to become life threatening if not treated early. These forms of cancer can happen even in dark skin individuals and occur in places not directly exposed to the sun. Therefore, as we draw to the end of Melanoma awareness moth and summer months are about to begin (at least here in the Western Hemisphere), I would like to remind everyone of the importance of knowing the risk factors as well as encouraging everyone to have routine check-ups by a dermatologists. After all, melanoma is a curable type of skin cancer if detected early with a 100% success rate.
Some groups of people such as Parkinson’s patients appear to have an increase risk of developing this type of skin cancer.
Although, the exact mechanism for increase risk in PD is not well understood; yet there is a 2- 4 increase risk in those who have Parkinson’s of acquiring melanomas.
Sign’s of Melanoma:
Know your ABCDE’s
A-asymmetry– the mole does not look the SAME on both sides.
B-border– the mole is irregular or scalloped.
C- color– dark color varying from one side to another with varying shades of tan, brown or black, these sometimes can be white, red or blue ( which could be a sign of an even more malignant and aggressive type of cancer known as Merkel cell carcinoma).
D-diameter -these are typically the size of a pencil eraser ~ 6mm but can be smaller – (take it from me – I have had several diagnosed some smaller and some much bigger! So know your body and do frequent checks especially best to evaluate moles is in the winter and best to do in your birthday suit at least every six months. (excerpt from Parkinson’s Diva: A Woman’s Guide to Parkinson’s Disease)
E- Evolving– any skin mole that appears different from the rest or any lesion that looks like is changing (evolving) in color, shape, or size needs to be looked at immediately by a Dermatologists.
Symptoms of Melanoma:
Usually they are asymptomatic especially in early stages.
Watch out for moles that:
- painful to touch
- bruises that won’t heal
- brown or black streak underneath a toe nail or finger nail
Risk for Melanoma:
- older than 50
- having 50 plus moles, unusual looking moles, and having large moles
- having fair skin (e.g. blond hair, blue eyes)
- sun-sensitive skin (easily burns, rarely tans)
- previous history of using tanning beds or had a previous bad sun burn
- weakened immune system
- family history of melanomas
- personal history of skin cancer especially melanomas
- having PD -especially LRRK2 gene
Tips for Prevention of Melanoma:
If you have had a melanoma you have a 5x greater risk of developing melanoma! so frequent exams at home and at your dermatologists are key to prevention!
- Do not do tanning indoors or outdoors- indoor tanning increases risk of melanoma 75%.
- examine your skin regularly- enlist the help of a loved one for those hard to reach places. make sure you check your feet, palms, soles, toenails, fingernails, genital regions, and your scalp.
- keep eye appointments regularly because melanoma can also affect the eyes.
- get free screening -usually the American Academy of Dermatology gives several FREE screens during the spring throughout the US.
- if you see any of the abc’s during any of these evaluations call your dermatologist’s immediately.
- spend time outdoors when the sun and UV light is less intense before 10 a.m. and after 4 p.m. (in the US)
- use sun block lotions liberally. Make sure you use proper sunscreen. No natural products because they are not safe to stop damage from UVA & AVB rays.
- wear sunglasses with UV protection.
- 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.
- Apply sunscreen at least 30 minutes before you go in the sun. Don’t forget to apply under your make up, feet, between your toes, tip of ears, nose and lips (use lip balm with UV protection) as well as back of legs and neck.
“The association between Parkinson’s disease and melanoma;” International Journal of Cancer; 128, 2251-2260 (2011)
Dancing, dystonic, discombobulated, distraught these are all ways people with Parkinson’s feel when contemplating the possibility of a life with dyskenesias after the initial shock of receiving a diagnosis. Yet, the reality is very different in my experience and to those who have studied dyskenesia epidemiology. Patients have been so fearful of Levodopa to the point of either avoiding medications all together or worse seeking help from a physician thus prolonging their diagnosis and making their disease symptoms worst and decreasing their chances for a good quality of life. Even when patients agree to start medications some have had have great trepidation in increasing the doses or stayed only with Dopa agonist despite severe side effects as some of you might have read the story of a young man with PD who was afraid of starting Levodopa compounds so even though he was experiencing severe side effects in the form of unprecedented gambling with the Dopa agonist, he continued to take the point of almost losing everything including his marriage. It was until he was on the verge of losing it everything that he cherished that he reluctantly agreed to stop taking the Dopa agonists and go on Levodopa to find out it made all the difference in the world. He is now putting back his life together and his symptoms seem to be better controlled according to his blog. Few things that might help you as a patient or caregiver decide which path to take early on when deciding on agonists vs. Sinemet or a Levodopa compound by whatever name you may know it in your country. First, remember Levodopa is your friend NOT your enemy! As I have stated in previous blogs and according to all of the new literature release on the subject- Levodopa is both neuroprotective and neurotrophic. By starting early treatment with this compound in the disease can actually be extremely beneficial since it appears to retard disease in ways that agonists do not. But, like I mentioned in my previous blog this like dopa agonists all have their own unique side effects. The key is learning how to balance their intake and when to use what and in what amounts. Dopa agonists have more sleep attacks, blood pressure problems over all as well as more potential for weight gain and water retention and in men gambling and other OCD behaviors but less risk of dyskenesias. As far as dyskenias are concerned it is interesting to note that the concern and fear is highest for all patients men and women alike independent of age at time of diagnosis or at early onset but as time goes on and disease progresses the concern with dyskenesias decreases. Even in the face of dyskenesias, patients who have these do not seem to mind them when asked out right, it is actually the wearing off and suddenly being unable to move that causes the anxiety and trouble when the disease advances. Dyskenesia look bad as do tremors but if you ask a patient are they bother most do not even notice them or care they have them is the spouses or family members or doctors which get concerned. I have set across many patients and friends with varying degrees of dyskenesia all of whom had told me that the movements did not bother them in the least and some were not even aware until I pointed out as to what I was referring to as an involuntary moment known as a dyskenesia. They all then proceed to state however, they did not like the feeling of being stiff and unable to move so rather be like this. Tremors like dyskenesia should be treated only when they are causing problems for the patient and interfering with activities of daily living. The excess movement is okay unless causing severe weight loss or gait balance difficulties…but what worries most physicians about dyskenesia is that once a patient develops these fluctuations, this is an indication of poor medication regulation by the body and brain which can result in sudden wearing off leading to more devastating problems like falling, chocking, and pain. The truth is that the fear is greater than the actual reality once it sets in and although it is believed that 80% of PD patients develop these within 5-10 years after diagnosis, it is important to know that women are more likely to develop this phenomena compared to their male counterparts secondly these can be delayed if agonists are started early or in combination with Levodopa compounds, other risks are younger onset of disease and duration and doses of Levodopa. Since, young onset PD in women seems to have the highest risk of developing dyskenesias, perhaps these are the ones to delay levodopa some and /or give much smaller doses in combination with dopa agonists or use levodopa with COMT inhibitors to prolong or extend the life of Levodopa compounds thus reduce the total amount consumed and decrease fluctuations. This has worked well for me in treating patients in past. Further, maybe we as physicians need to change our early treatment strategy based on gender and potential for dyskenesias weighting the risk compared to other more serious side effects like gambling. Next time you know of someone diagnosed with PD or a physician suggest that you or a friend start taking Levodopa don’t shy or run away from idea simply on the basis of being afraid of developing dyskenesias. Discuss the issues in detail with your physician most importantly the need for combination therapy to maximize medications benefits and minimize side effects of each always taking into account your gender and what we have learned thus far about how different genders respond to different medications. But above all, remember that NO TREATMENT is ONLY going to Harm you in the long run and shorten your independence and DECREASE your Quality of life. So imperfect treatment is BETTER than No TREATMENT at all!!
Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at email@example.com contributor http://www.assisted-living-directory.com
Is there Life after Parkinson’s?
Many would argue and answer in the negative while others hold reservation inclined to a more optimistic attitude….
I would say a resounding YES!….There CAN be a GREAT LIFE after Parkinson’s…
just look at Michael J. Fox ….he has been up and down ( now I feel like breaking into chorus like Sinatra) but I digress….he is starting in a brand new T.V. show which debuted a couple of weeks ago in which he is the main star playing a man living with Parkinson’s Disease (PD).
After many trials and tribulations even in the face of continued dyskenesias, he has found his niche again……
I myself have not always had an easy time of it in the last 8 years since my diagnosis. I have had to face many challenges of my own and at times simply felt like giving up but despite all the heartache and personal losses in the end the uphill battle has been worth the climb!
In thinking about the life with PD, I am reminded of the dry bones in the desert into which God breathe life into ….surely we are not to that stage yet, so there must be hope …
Yet, all us have been confronted with the stark reality ….this IS OUR LIFE and IT WILL ONLY GET WORST (PHYSICALLY)..which BELIEVE ME ……even for an ETERNAL Optimist such as myself …this is ONE BIG MASSIVE HORSE PILL to SWALLOW!!!!
I can certainly understand why some people feel like they have been handed a “life sentence” when given this disease diagnosis. I, as a neurologist and Parkinson’s specialist, have witnessed all the varying stages of this devastating illness from early diagnosis to patients finally succumbing to this diseases having battled it for years with courage, great dignity and equal bravery.
when I think of these wonderful people whom I had the honor and privilege to care for I get sad, begin to bargain, but refuse to get mad……so I feel like I am drowning …….BUT maybe we do NEED to get MAD…..and fight …back with even greater force…we don’t have to take it….we don’t have to be passive….there are things we can do for ourselves and others….but we first have to learn to LET GO of the pAST (something which I have had a very hard time doing until very recently) ….we as individuals are meant to grow and change and evolve…so why cant I move on? I guess is stubbornness, denial, vanity, not accepting that I too need help ….we are not islands to ourselves…we do not live in isolation…..the body functions with the help of many members with different functions …yet they are equally important…one CANNOT function without the other! We need each other as support …
Now my chronic illnesses (PD) has put me in position to be dependent on others at times but it has also allowed me to become a better human being a better person, wife, mother and friend! I can appreciate my patients humanity and makes me want to fight the stigma of PD with which so many people live with even more.
The other day as I was sitting at a football game watching my daughter perform in the band, I saw a beautiful rainbow in the sky …which reminded me that ” you can’t have rainbows without storms” yes, my life has been one HUGE storm lately but I have seen and experienced many wonderful things along the way that had I NOT been diagnosed with Parkinson’s and forced to look for plan B and give up my solo practice…I would have missed out entirely….like going to my daughter’s concerts at school, and learning to be a better mom- my daughter said the other day…’ your cooking has gotten so much better since you stopped working! I am so glad you are home more now!” these are the real treasures in life ….that along with all the wonderful and extraordinary people I have gotten to meet along the journey have deeply impacted and enriched my life forever in a way that perhaps would not have been possible with my previous duties and responsibilities even if it was my desire to connect more with others (outside of my practice and immediate circle of friends and colleagues)….
As dumbfounded and somewhat apprehensive about my future (knowing all the intricacies of the disease first hand) as I was, it was liberating to know I had a chance to do something new with my life! This was the opportunity of a life time…how often do we get a chance to start over? Until now, I had always known or had an inkling of what I was going to do the next day and the day after. But, now the pages were blank….it was up to me to decide if I was going to panic, be paralyzed and consumed by this illness or pray and be empowered by it and continue pursuing my passion in different ways outside of my traditional role as a neurologist. Parkinson’s has allowed me to express myself more creatively through my writing and has thought me to laugh and find joy in everything no matter what. Life is sweeter this way and makes the hard times easier to endure.
So, where ever this disease finds you today whether still gripping with the shock of a new unexpected diagnosis or you are cruising life as a pro or battling the problems that come with end-stage disease, I encourage everyone to embrace the odyssey of becoming more human, more empathetic, more able to relate and anticipate the great need of others (like ourselves).
And in a hostile world where things don’t always go our way and terrible things do happen to good people…despite your limitations and failures shout as the poet and author W.H.Auden once wrote : “let the more loving one be me!” (The More Loving One) and in the process all those new found relationships will deepen your reason for being and help to discover goodness and contribute to its beauty by the works of art, music, poetry and other writings you all create by virtue of having Parkinson’s.
Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.alz.org, http://www.aan.org, http://www.defeatparkinsons.blogspot.com
may also contact me at
Today on this day of love and friendship I want to remind everyone about the power of LOVE in our lives- as it is the biggest intrinsic dopamine producer of our brains!!!
We all know that feeling of being completely head over heels with someone and feeling on top of the world, unable to eat or sleep, yet having complete clarity of mind. This my friends is the natural effect of dopamine. It feels GREAT! this is the feeling we strive to imitate each day we take our medicines- no wonder cocaine a dopamine receptor drug is so addictive!
According to the Greeks there are 8 types of love – and in my opinion all of them are capable of releasing copious amounts of dopamine in various degrees. This is the reason why we must not only stay connected with one another and develop these types of relationships but also find our passions to maintain a steady stream of dopamine in our brains keeping us healthier and more satisfied with our lives.
We all know about Eros which is our romantic love but this one is as quick as taking apomorphine- comes on strong but burns out fast and in order to preserve the feeling and connection we must switch to another type of love or dopamine replacement medication one which will be not so intense but last longer and be steadier. But if you are with your best friend – sparks will fly each and every time sending dopamine in truck loads with a single smile or look as it does me and the love of my life!
Philia– or brotherly or affectionate love was considered by Greeks as a much powerful type of love because it involved love between equals. This is the type of love between good friends. Having a friend that will keep you accountable in your disease is crucial to your well- being and success. Having a friend that sees you through your tough times with PD is invaluable. Be thankful for your friends today and make sure you let them know how important they are in your life. If you don’t feel like you have any close friends is time to find a new one in your support group or church. Don’t be afraid to make the first move.
Storge or familial love is the kind of love between siblings, parents and children. This can also occur between childhood friends lasting ’til adulthood. This is equally important to a better life with PD because lack of support from our family and special friends can lead to depression, anxiety, and isolation. Make sure that you include them in your care and diagnosis to help you become more empowered as an individual.
Pragma or enduring love is the kind of love in marriage a matured love (hopefully). This type can also be found in friendships which have endured for decades. I am lucky to have a few of these. How about you? This is a reciprocal kind of love which forces you to know yourself and boundaries well. Thus making you a more balanced and happier individual.
Then there is agape or selfless love. This type of love is unconditional like the type God has for us, or what we have for our kids and our pets have for us. This is filled with boundless compassion and endless empathy. This is the purest type of love. I have discovered that my little kitty knows exactly how much love I need. It is amazing how he knows when I am sick and in those days he does not leave my side for a second. It is comforting to know that there is someone out there that will love us no matter what- flaws and all. When we are loved unconditionally it gives us strength to keep fighting and moving forward. So be thankful today for those people that empower you to face an ever changing illness without fear of what might happen because there is someone to care for you and be there no matter what. For me my greatest love is God. I am not afraid of what tomorrow might bring because I know He has my best interest in mind and is strongest when I am weakest.
Finally, there is Philautia or self -love. This is the type of love many of us lack and I myself had to rediscover when confronted with a chronic illness. My being was wrapped in being a doctor and had to rediscover myself-
I found that …
•I am stronger than I thought •Despite years of hiding my physical flaws I embrace them •I love being a mom •I discovered that there is a life after PD •I can be me and still use my medical knowledge •I am creative after all •When I was young I was very shy and afraid of public speaking- now I have become a voice for women •I am excited about living (can’t sit around waiting to die) •I believe in the power of love, prayer and faith! •I believe in fighting for what you want and NEVER EVER Giving up – that there is always another dream!
You will discover that once you love yourself you will want to fight this disease with all of your might-you will have a positive attitude and view of your future. Once you are comfortable loving yourself can you begin to grow and expand your universe and give love to others!
Happy Valentine’s Day Everyone!!
all rights reserved by Maria De Leon