Chaotic House in the Prairie: By Maria De Leon

There is no great loss without some small gain.” Laura Ingalls Wilder

Ok so it’s not exactly the prairie but I do like to think of it in the middle of nowhere. I am after all surround d by large pine trees and the wild fauna seems to enjoy the flora around my house attracting many a doe to give birth on my front lawn. Although, I have grown to love my community and appreciate its charms can’t take the city of this city girl. What then does an out of work night owl who has chronic insomnia thanks to PD do for entertainment in the middle of the night? Well there is always Walmart… but not really my thing so besides reading, watching a zillion movies, and preparing for my new women’s class, or working on two books (which I am attempting to finish and publish this year),there is something more practical. One exercise by dancing which unfortunately only contributes to the insomnia not recommended. But, as many of you who live with PD and other chronic diseases will attest that mornings are just extremely disorganized, slow, and rough for all in the family. You wake up stiff and staggering then you take your medications and either don’t work as always because of severe constipation or bad side effects like nausea, migraine, dizziness so you lounge around for a few minutes but before you know it it’s noon and your husband is home starving and the meal you have been planning for three days ….

“I guess you are not cooking! Should I just put away that chicken and make dinner tonight?

I sigh, as he walks away to make himself a sandwich.

Finally, around 3:30 p.m., I begin to feel like myself having wasted half the day away I drag myself to shower and wash away the “illness” if only it was possible. He returns having gone walking around the stadium which I could not join today due to being dizzy and nauseous, and with my daughter; but instead of letting me cook dinner he jumps in and takes over so I begrudgingly oblige.  (He will be back to work in a couple of days and I will have no recourse but to manage best I can).

Soon it will be time for him to retire to the bedroom and I will have complete run of the house.

Fortunately, this is the time I can spend with my daughter who happens to be a teenager and is also a night owl. I help with homework, Spanish particularly, and we laugh because my brain is still slow and gets tripped easily at times then as always a customary snack before bedtime.

Its midnight now, finally house quiet and I can think clearly.  I am full of energy and feeling great. I decide to make the mole I have been trying to prepare for the last 3 days so when I don’t feel well tomorrow food will actually be ready and on time for my husband to eat at noon. But, I am so weak, shaky and dystonic I am having trouble opening the jar of mole. I laugh out loud at the new label on the lid which reads “new and improved easier to open lid” but nothing has really changed looks exactly the same it has looked for half a century (and I chuckle a my fellow countrymen then I get a bit sad when I think what if I can buy this product anymore with new changes in government?) I don’t want to think about it anymore tonight…

I am making one of my favorite dishes. If only I could find a way to open the darn jar. As I search every cabinet and beat and pound on the jar I hoping it won’t shatter since made of glass, I feel like the cat in the cartoon where he is left alone with cabinets full of tuna cans but no can opener!

Should I call mom at this hour and ask for advice? She too is a night owl. I do. Of course she is awake. We talk for a while then she asks what I am up to and laughs wholeheartedly at my situation but gives me a solution. At last I can finish preparing my mole! I am tempted to eat some when done an hour 1/2 later, but I restrain myself. I need to go to bed it’s close to 2 a.m. Maybe a glass of wine will do the trick while I wait for food to cool enough to refrigerate. Surprise, surprise, I can’t open wine bottle either.

C’est la vie!  Although, I am not really sleepy I drag myself to bed “for tomorrow is another day” or maybe later today and wait for sleep to come and resume the chaos which is my life with PD.

 

 

 

Women’s Health & Sexuality: By Maria De Leon

“It’s not the size of the boat but the motion in the ocean…”

(Image by Ross Webb)

There I was, in the middle of a crowed classroom, addressing students and faculty alike about human sexuality  and talking about “orgasms” and “premature ejaculation,” with not as much as a wave of discomfort when it suddenly dawn on me – I had somehow morphed into Dr. Ruth (Westheimer)- iconic sexologist of the 80’s. I chuckled inside a bit as I continued lecturing. If someone one had told me that a shy, introverted young girl with “rose-colored” eye balls  and little world experience would become this carefree, self-confident, mature woman expounding on the issues of sexuality, I would have died laughing in utter disbelief.

Nevertheless, with age along with living with a chronic illness has given me a new found freedom one and  voice to help women of all ages deal with chronic illnesses particularly those with chronic neurological diseases such as PD. Having treated many women over the years as well as living with PD myself, over the last ten years, has made me realize the need for awareness and much needed dialogue in this vital aspect of  every woman’s life. because sadly until only a few decades ago, there was a misconception regarding women’s sexuality which  was promoted by men, I am sure ( some sort of ploy to keep women under control),  that women have a decrease libido compared to men. This of course is entirely false, although as in men there are some women who have greater sex drive than others.

Yet, despite the fact that when chronic illness strikes sex and intimacy are unwittingly place in the back burner for many of us, sexual expression and sexuality is still at the top of our lists. this is one of the factors we deem important when we think of quality of life. However,  it seems to me that for centuries women have gotten the short end of the deal in this department thus going on for years suffering both physically and emotionally from lack of  appropriate care.

Here are some tips to become a SEX Goddess again ( at least in our own minds!)Rita Hayworth 1941:

First, it is important to recognize that both men and women suffer from sexual problems when it comes to chronic disease like Parkinson’s. Although, some of the issues are inherently different we share many things in common such as fatigue, depression, hormonal changes, lack of energy, medication side effects, stress and anxiety all of which can put a kibosh to our libido. Therefore, it is imperative that you feel free to discuss these issues with your physician as soon as they arise and not make it a “door -effect” as I like to call it… I.E. “oh by the way doctor, I have this problem when I have intercourse,” as you are walking out the door of the examining room. of course we must also remember that like the infamous “birds and the bees” sexual prowess’s can be wide and varied depending on partner, experience (history of trauma, or abuse), culture, religion, etc.

For us women the reasons for sexual dysfunction- this refers to

  • lack or loss of sexual desire
  • anxiety during intercourse- muscle stiffness, loss of bladder control
  • pain during intercourse- recurrent urinary infections
  • dryness- this is one of the most common problems from autonomic dysfunction (decrease blood flow) ; hormonal changes
  • trouble achieving orgasm
  • vaginismus- muscle contract involuntarily preventing penetration

How to prevent Parkinson’s from hijacking your libido and sexual desire:

Having sexual problems may feel like an insurmountable task to overcome thus may be tempted to throw in the towel and give up and give into disease.  however, with lots of love, patience, and persistence you and your partner may begin to enjoy a healthy sexual interaction that does not always mean sexual intercourse in order to be satisfying and fulfilling. Sometimes SEX ( BIG and BOLD) is just s e x (barely present) yet equally rewarding.

Since vaginal dryness is a HUGE issue- try lubricants ( water based best) don’t be afraid to stop and use more if needed. Hormonal replacement topical or oral can also go a long way for this as well as help with some of the loss of libido issues.

Of course fatigue and poor energy can be a disastrous problem when trying to be at maximal arousal- thus try different times of the day or night when you are most awake and energetic- I guarantee you will sleep better and burn off a few calories in the process.

Incontinence- many of us with PD especially as disease advances may find ourselves dealing with this pesky and extremely embarrassing problem. Don’t hide or avoid intimacy altogether, instead talk to your partner and your doctor. Padding the bed with some towels or disposable urine pads like the ones used in hospital, which can be purchased at a medical supply store, can help ease the discomfort and allow you to relax.

Don’t neglect your relationship, find other ways to be intimate. I love when my husband massages my back especially since it is so stiff that I almost appreciate that as much or more depending on my mood than intercourse. spend time cuddling, or touching each other, bathing together. a single touch (hug) of 7-8 seconds can release as much natural neurotransmitters ( serotonin, dopamine, oxytocin) to make you happy.

Above all make time for one another aside from “caregiver/partner” and “patient.” This of course a lot of communication, which has to happen daily.

When all else fails or in conjunction to above  ( this will give best outcome) along with medications to help treat specific problems like infections, dryness, anxiety, incontinence, etc.; there are alternative treatments such as behavioral therapy for individuals and couples, sex therapy, acupuncture, yoga and meditation to name a few.

So go ahead embrace your sexuality and you like me may want to say

“I want it all!

I believe in love, lust, SEX, and romance

I don’t want everything to add up in perfectly neat equation

I want mess and chaos

I want someone to go crazy out of his mind for me

I want to feel passion, heat and madness.

I want it ALL!” (Mirror has two faces)

 

Is there still benefit to doing a Levodopa Drug Holiday as PD treatment in this day and age? by Maria De Leon

 ” A vacation is what you take when you can no longer take what you’ve been taking.”

~ Earl Wilson

 

As we celebrate Columbus Day weekend, I am reminded of another holiday we don’t uphold much nowadays– levodopa drug holiday! Since we were first diagnosed with PD and introduced to levodopa, all of us who live with this disease have come to realize the wonderful effect one little pill can exert over our minds and bodies making us forever be holding to it. Yet, as an addict that tries to recapture the first sensation or effect of a drug, we too continue to take our Parkinson’s drugs daily in hopes of making us feel like ourselves once more. But, as with anything that alters the chemistry of our brains, levodopa effects also wean over time requiring a larger dose to have similar effects on our bodies and minds. This in turn leads to greater potential of abnormal or unwanted side effects the higher dosages or length of time we take these treatments like dyskenesias. Even when you stop taking these medications, you can never go back to a de novo state – your dopaminergic and entire brain network is forever altered.

For me nearly 10 years of taking medications for my PD has meant recent development of serious side effects like arrhythmias and malignant hypertension as well as chest pains. These terrible side effects prompted me to start thinking more and more about ‘Drug holidays.’ As I have tried to regain control of my PD symptoms and my quality of life, by bringing a balance of drug efficacy and minimizing drug induced nasty effects, I began thinking about the many PD patients I have treated over the years. Several of my patients I was able to management effectively only by giving them a much needed ‘drug holiday.’ Of course a lot of this occurred before we had so many new drugs to choose from and DBS (deep brain stimulation) was not as widely used accepted or approved as of yet in our armamentarium against Parkinson’s disease. The purpose of these so called holidays was to restore balance and well -being for those having dyskenesias, motor fluctuations and other unwanted difficult to manage or live with side effects. The idea is not unlike that of Huxley’s Brave New World where people (in this dystopian society) took “soma holidays” to induce a state of total relaxation. In our case these much needed holidays were designed to improve or restore quality of life by decreasing drug dose and subsequently reduce side effects.

I am not really certain when we stopped offering drug holidays from levodopa as a another tool but it seems long gone are those days we neurologists / MDS used to employ this now unorthodox practice in the treatment of our advanced PD patients.

Why did it ever stop? Perhaps, because we felt that we could manage patients symptoms successfully with new drug treatments as well as prevent some of the unwanted problems altogether with the advent new, better, and more specific drug treatments. For the most part this has been the case since as a whole we are now able to delay dyskenesias by addition of longer acting, continuous delivery of drugs; yet there are some people like me that eventually will build tolerance to these PD drugs or somehow develop antibodies to treatment drugs as in other neurological disease states like Multiple Sclerosis – (or even be part of a small group of individuals who naturally possess antibodies to particular drugs such is the case with a small subset of people known to have antibodies to the class of medication known as beta blockers). Although no one has ever looked at this phenomena in PD patients to date, there are now new quick techniques emerging which can tell us with certainty what medicines we can and cannot tolerate. Perhaps we should start using and taking advantage of this new technology to aid our patients in being able to achieve a higher quality of life particularly in patients like us with chronic illnesses such as PD. All it requires is swabbing of the cheek and voilà. As I await for my own, I decided to undergo a levodopa holiday myself.

Although several studies have confirmed the benefit and was widely practiced during my training, some still believe the practice to be risky and controversial particularly for those in late or end stages of PD where this technique was believed to be best suited. This type of procedure always required close supervision by a physician and very often required hospitalization. We used to withdraw patients slowly of their meds and placed them on amantadine. Similarly, I undertook the same route of withdrawing myself of all my Parkinson’s medications while staying only on amantadine. I would not suggest anyone doing this on their own without first discussing in full with your MDS/ treating physician. If your physician agrees, he or she will most likely insist in a hospitalization or very close supervision. I discussed with my physician and was in the vicinity of the medical center everyday should there be any problems. The reason for the close monitoring is due a potential complete paralysis which can occur from a rapid sudden withdrawal (the common way of doing in the hospital setting). Of concern when doing this is paralysis particularly that of respiratory and swallowing muscles. I was at lower risk of developing profound paralysis because my disease is not end stage nor am I having motor fluctuations or dyskenesias and I was not taking a very high dose of levodopa. Furthermore, rapid withdrawal of levodopa can cause severe autonomic dysfunction and a syndrome known as neuroleptic malignant syndrome and/or ocular gyric crisis where eyes deviate involuntarily.

In cases of drug holidays, a gradual reintroduction is usually more successful minimizing potential for side effects than reintroducing drugs at previous dosages and schedules. Usually patients confirmed in a small study of 16 patients can go back to taking half doses which in turn result in fewer unwanted side effects.

Based on my knowledge and experience, I stopped all my meds except amantadine – felt wonderful for two ½ days especially intriguing were the fact that my arrhythmias, chest pain and extremely high blood pressure normalized immediately. After this, I slowly began having increased stiffness, slowness, restless legs, and hypophonia. As the week went by the severe stiffness of my axial muscles triggered an excruciating back pain leading to severe radiculopathy and difficulty walking due to pain and radiculopathy not to mention return of increased frequency and urgency which was not fun especially since I could barely ambulate. I then developed some mild swallowing difficulty. It was clear I needed to reintroduce my medications before I worsened. I resumed intake of my Neupro patch at previous dose which decreased my bladder symptoms and aided in my slowness and stiffness but brought on once again some irregular heartbeats. Thus, I opted to decreased dose to half which stopped abnormal heart beats but once again worsened my pain and stiffness. Thus, slowly I reintroduced levodopa but at a lower dose than previous which stopped the back pain and stiffness. However without the aid of the Neupro patch and Azilect the wearing off of levodopa was much more pronounced. Subsequently, I restarted Azilect which invariably led to an increased my blood pressure once more and irregular heartbeat. In the end I have decreased my levodopa only as well as taking alternating smaller doses of both Neupro and Azilect. I am doing great except I have to be more mindful of my dosing schedule otherwise I feel the wearing off much more pronounced- still tweaking.

Good thing is that I was able to cut down not only my PD meds but also I have been able to cut down on my blood pressure medication. On the down side, reintroduction of medications has returned side effects I no longer had such as my nausea returned even with intake of Zofran and having wild crazy dreams due to medication effect. I trust I will develop tolerance once more and these will disappear.

So this holiday weekend I am once again enjoying myself with my family thanks to having had a nice drug holiday….

When all else fails take a ‘drug’ holiday and start a new with a new lease on life and better PD control.

I like to see this practice return as an option …how about you?

Sources:

https://www.researchgate.net/publication/16005903_Drug_holiday_and_management_of_Parkinson_disease

https://www.ncbi.nlm.nih.gov/pubmed/3793959

https://www.ncbi.nlm.nih.gov/pubmed/17370308

http://onlinelibrary.wiley.com/doi/10.1002/j.1552-4604.1986.tb02969.x/abstract

https://www.ncbi.nlm.nih.gov/pubmed/3793959

Finding Inspiration All Around Us: by Maria De Leon

With the new day comes new strength and new thoughts.” Eleanor Roosevelt  

 We are all planned, planted and pruned for a purpose by God.

The last month, as all of you who have been following my blogs have discovered,  I had a small set back which has led to some decompensation due to having PD as a chronic underlying illness. This is not entirely uncommon especially for those of us who are as complex as I am. But, as  bad as I have felt most of you know that I am not one to give up or just sit around ….although I must admit I have been sleeping a lot more than usual. Nevertheless, I am determined to get back to my base line and able to continue traveling and speaking so besides having a ton of doctors appointments which have required someone else to drive me in one or two occasions, I have resumed water therapy.

We have a new instructor who is simply wonderful and understands well the complexity of the body especially for those of us who have neurological illnesses like Parkinson’s disease and incorporates techniques of tai-chi, yoga, and cardio all in water settings. while doing these exercises I have discovered two things. one, that I am weaker than I thought ant two that even though I feel great while doing these exercises afterwards I feel completely wasted due to severe nausea and vertigo it triggers. However, within this same setting I have encountered several of my patients who I was not only delighted to see but also glad to see they were engaging in therapy.

One particular patient has completely inspired me to continue despite the ill effects it has produced. because I know this too shall pass as I always say but recently I heard someone say that it would pass like a kidney stone. That is exactly how I feel, slow and at times down right excruciating. Yet, my discomfort no matter how painful is nothing comparable to what some of you have endured and what some of my patients have suffered. particularly, this courageous lady who has a most severe neurological disease which has now left her nearly paraplegic with severe upper extremity tremors. But having this illness has not stopped her one bit. You will see her around town frequently in her motorized wheelchair doing for herself and others. Similarly, she is there in the pool without fail trying her best to follow the instructor. Last session she nearly drowned a couple of times. somehow I doubt that this minor things in her mind will keep her from coming back. Knowing that she has endured  for a lot longer than I have and continuous to fight daily has given me the courage to persevere and deeply admire her inner fortitude. so, when Wednesday comes I will take some Zofran prior to my exercise therapy and I will be there working at getting myself well once again and encouraging her to continue while keeping a closer eye on her so no more incidents of near drowning occur like having life guards near by and having her wear a life vest.

So you see, all you have to do is look around and you are apt to find some inspiration in your life . No matter how bad we think we might be or have it there is always a reason to go on fighting. it may take a bit longer but I know I will be among you chatting and visiting once more very soon; because in the end we are always worth MORE than we feel and there are no strongholds greater than God.

Image By Andre Kohn

Looking for the Lovely in Life: by Maria De Leon

Suffering creates patience and patience builds character and character builds hope.”

Romans 5:3-5

 

It is easier to find things to be happy about when things are looking up and everything is going our way. However, when we are faced with a chronic illness, especially as our strenght diminishes looking and finding lovely things around us, which reminds us of brighter days and better tomorrow’s, is not always an easy feat.

I love the word lovely…it means beauty beyond compare. Something that is worth loving and fighting for. In the Bible Queen Esther was described as lovely. this is the same word I would use to describe the love of my life- simply lovely!

Lately, as I have once more been confronted with declining health, I started thinking about this word which unfortunately is not use very much in our society. the power of this word led me to think about the loveliness of God in my life through the years. Now more than ever, I wish to again hold on to that loveliness and beauty  as I find myself being torn yet again about knowing what needs to be done from a doctor’s perspective  while being terribly unhappy as a ‘impatient’ patient that needs to submit herself once more to the medical scrutiny and becoming a test subject to determine my full health issues and get back on track.

As I gear up for an extensive week of testing which involves, poking, prodding and a bit of educated guessing I really have to focus on the lovely things in my life to get me through this rough patch where I may become worse before I am better; or discover another bad problem which I am not ready to accept or deal with just yet. All the while trying to maintain my composure, hope, faith, and a daily routine especially as the new school year is about to commence with all of its challenges and demands.

When we are down and troubled we as humans sometimes just want to quit and give up . But this is the time when we need to persevere the most.

How do we persevere in the midst of trials and hardships?

We do so by finding the lovely in our lives. Looking for lovely is akin to remembering someone we love deeply and is no longer present or near by.

I am sure you are all aware of what I am referring to. when you love someone wholeheartedly, everything reminds you of that person.

Similarly, when you are down and trying to hold on conjure up those images of people and places which brought great joy and comfort. Think about all the situations in the past which seemed bleak  yet; you were able to overcome through perseverance. Look around at the beauty of a sunset, or the colors of the changing seasons, or the calmness of a wintery scene. All of them are beautiful in their own unique way and serve a purpose.

Appreciate the changes that are inevitable as the seasons. Look forward to new discoveries, new beginnings, times of rest and pruning as we welcome the unexpected changes and surprises.Me suddenly having a mini stroke and pulmonary embolism certainly was out of the blue and unforeseen but  I am learning to embraced it as a way to enhance my patience, since this has always been one of my worst traits. As the above verse came to mind, I guess in order to achieve patience one must suffer. I got a disease that makes me slow in more ways than one. But, patience is not the end goal rather than living a life full of loveliness and hope as my character is further enhanced and stripped of things that make me less than lovely and keep me from my work of helping others.  So as I undergo further testing and evaluation, I will meet friends that remind me of beautiful things, I will cherish the love of the man I love, talk more with God and appreciate His goodness in my life even as I write this. Then use what I learn to take the next step in my journey in life with Parkinson’s disease.

How to Become A Parkinson’s Woman Who Does NOT Quit!: By Maria De Leon

I have  fought the good fight, I have finished the race- I have kept the FAITH!”

~2 Timothy 4:7

I feel like I have been gone from you a long time and perhaps by the standards of today where everything is done in a hurry and we want things yesterday…I have.

But, sometimes in order to continue serving and working we must take time to replenish our soul. So, this is precisely what I have being doing the last month and 1/2 to be a better motivational speaker and writer but above all a much better person. Of course, I took time to celebrate another wonderful year of life. I am particularly grateful to say I am getting to that age where age is just a state of mind and not an actual number since 10 years ago I was told I might not be around longer than 6 months!

All the traveling I have done over the last 7 months doing women & PD  work along with motivational speaking to various Parkinson’s groups has been a wonderful experience allowing me to meet all sorts of incredible women  and people across the country who are living with and caring for loved ones with PD.

You women are my source of inspiration- women like my friend Nan Little who despite having PD was able to climb Mt. Kilimanjaro.

What I have learned in my own journey of life and with PD in the last decade is that strong women NEVER quit on themselves or others no matter how challenging the task is or how though the going gets.

My own personal strength comes from my faith in God and believe you me when I tell you this is by no means perfect. I falter a lot and have to start over sometimes multiple times a day ….

I have learned 5 secrets which strong women who never quit employ- this from a Bible study on Ruth. Ruth was a woman who lost everything…her family, her husband, her friends and her own faith for a while but never let go of HOPE. I am sure many of you like me have found themselves in this situation.

What then must we do to Persevere?

When all we want to do is QUIT and hide under the covers or we simply just don’t FEEL like we can go on a second longer? 

#1 We must ACCEPT our present circumstances even if we do not like them. No one enjoys a hard lesson, having a hard life, or having PD. But, having Parkinson’s may be the way to a more refined life (happier, better you). I know that although I don’t wish I had PD I have become a kinder, nicer, more caring, more patient person than I was before.

#2 We must FOLLOW THROUGH despite our feelings. These days we give to much emphasis to how we feel and what we feel; but sometimes feelings can be misleading and can paralyze us. We must have enough discipline and conviction to keep moving forward whether we like it or not. This is what got me through all those years of struggling as a student with little money and little to eat because I had a goal to become a doctor! Even if I did not like the hours, walking across a deserted Parkway lined with homeless people at 3 am, in the middle of winter storm and had to walk across miles of plowed snow blocking side walks freezing my knee caps and face off –  I HAD to go! The same with PD. Sometimes we use it as an excuse to forgo commitments and become undisciplined in our life. Yet if we learn from a strong woman like Ruth despite her anger, despair, brokenness, and sadness she still went out to pick up the left overs in the field to eat.

I have discovered in my own life that when you are willing to follow through no matter what things just happen- you suddenly find yourself in the right place at the right time meeting the right people. That’s how I chose my undergraduate which led me to becoming a Parkinson’s specialist and found PDF who also led me to you fine women.

#3 We must Keep our hands OPEN. When you are accessible, people can come to you freely and can count on you. You can’t very well be a mentor to others or support others if you are not approachable and are mean, bitter and off-putting. Life will always be messy before it gets better.

#4 We must have emotional generosity It is easy to donate money or write a check or give of your time when everything is well and you have time to spare. But, what about giving what you don’t have? I once was going to a bible study of course I was running late as usual because my pills were not working, I was throwing up, I was having a hard time dressing and so on…you all have been there at one point or another. when I finally made it I was relieved to be there although was already feeling bad for not being able to come on time so I certainly did not need a sermon from one of the elder ladies who suddenly snapped at me for being tardy and pointed out to be that if she being an older woman could make it on time – I certainly could! of course, I’m don’t have to tell you that this did not suit especially since I was already feeling physically ill. although, at that moment I was feeling less than loving to say the least I held my tongue and asked her instead if everything was okay with her because she was not being herself? she broke in tears..  She had just being diagnosed with cancer! Needless to say, all my anger melted away instantaneously and even though I was feeling lousy I found somehow courage to stay with her and console her until she found relief. Interestingly, the more I gave of myself the more I found to give and ended up feeling better the rest of the day. The best way to have your needs met is to give others what you need!

#5 Finally, keep moving forward in faith even if you don’t see the end of the rainbow.. so many people have given up just before the crossed the finish line and this is a worst feeling to have. For some reason we women are the worst at this, we are impatient when we don’t see the desired results immediately but like climbing a steep mountain with winding treacherous paths, the best way to keep moving forward is one step at a time in the right direction and keep waiting!  I don’t want us to become like that famous woman who set out to row across the English channel and went on and on through all kinds of perils and overcome with fatigue, self-doubt and exhaustion gave up a few feet away because the fog had clouded her vision.

Cry if you must- but NEVER give up!

Sources:

5 habits of women who don’t give up by Niki Koziarkz

 

Unraveling Complexity of Being a Chronically ill patient: by Maria De Leon


 

A decade ago, I would have sworn I was the healthiest person; sure I had minor inconveniences like thyroid cancer at young age and migraines since childhood. But my life on the whole was great! Not that is not great now just different…I took one medication for my thyroid and every so often I needed a migraine abortive medication. I rarely set foot on the premises of a pharmacy. I would take my thyroid mediation like clock work without much fuzz. I NEVER heard from insurance, pharmacist, or other doctors regarding myself. of course, I spent countless hours dealing with all of these regarding my patients. each year, the number of hours I spent on phone and written letters on behalf of my patients steadily increased by now most doctors with a busy practice like mine spend a great deal more time trying to get around the bureaucracy and paper work involved just to get patients what they need to get better. the most frustrating thing besides arguing with insurances about approval of much needed medications was arguing with them about approving benefits to cover their care especially in terminal cases. Too often the help came too late.

Now, I am a walking, breathing, veritable pharmacy – my purse has grown over the years just to accommodate the ever growing number of medications I require to function; which invariably keeps expanding. Each time I think I have stabilized, there pops something new to throw a wrench in the system. Just the other day, I spent the morning at yet another unforeseen doctor’s visit due to acute labyrinthitis from an ear infection and guess what? More meds were thrown in the mix. Now, I have been assigned both a nurse and a pharmacy specialist to my case.

First, where were these people when I needed them to help out with my patients care? Secondly, in theory having a past medical illness or chronic disease  is not supposed to matter in the coverage of an individual by any insurance. Yet, in reality all of us who live with a chronic disease is being analyzed by some committee somewhere as to how much “resources” we are using. These resources which include medical, laboratory, ancillary, and pharmaceutical services are precious commodities which yearly are contracted to the lowest bidder. While, the premiums and out of pocket expenses continue to go higher as the coverage for those commodities continue to go lower for those of us who happen to have the misfortune of having a serious medical problem. Everyone who lives with PD and other chronic illness can testify to this fact.

After laughing out loud in disbelief for having NOT one BUT two specialized people dedicated to help with my care, I began to shake my head regarding the absurdity of our medical system. After speaking with these well meaning individuals who did not realized, I was a doctor, neither one had any answers to my REAL problems or concerns. No! I DON’T NEED SPECIAL EQUIPMENT, TRANSPORTATION, OR HOME SERVICES- ALL I NEED IS APPROVAL OF MY EXTREMELY EXPENSIVE MEDICATIONS AND TESTS so I don’t require ANY of the above and won’t end-up in the hospital as many of my patients have in the past due to poor coverage of medications and frequent changes dictated NOT by real medicine rather by pure economics!

So, after an hour each, they both politely stated they could NOT help with my problems. They could not convince the people they work for that these medicines are keeping me functioning and that perhaps might even help me return to gainful employment and at minimum are keeping me out of the hospital and getting worse medical problems if they were only able to approve the PET scan my physician ordered to make sure my cancer has not returned. But, to no avail. The answer was ALWAYS NO! But, will call you again next month at the same time. No wonder I like that new song of Meghan Trainor ” No.” “My number is no!, my name is no!, my {everything} is NO!” when I talk to the insurance companies…so do we need to let it go?

I hope we DON’T let it go otherwise we as a society will continue to hurt and suffer the consequences and end-up in a state not very dissimilar to the one in Mexico and other countries where socialized medicine has taken root.

I still cringe at the terrible experience my family underwent while my grandfather was hospitalized for a GI bleed in my hometown in Mexico. First, after having to transfer him to a “private” hospital because there were no medicines or even much staff at the government owned facility-the specialist he needed, not unlike what is already happening here in many smaller communities, was 5 hours away in another state and could not come for several days. So, he continued to bleed for which he required 14 pints of blood which by the way the family had to procure on their own because the government has no money to maintain a blood bank. He ended with 2 mayor strokes subsequently- which of course I witnessed personally and was helpless to do anything about since there was no treatment available for what he needed.

I am afraid that as the population continues to age and incidence of dementia, Parkinson’s, strokes and other chronic debilitating diseases begin to rise the quality of life for each individual will steadily decline in this country despite all the major medical and technological advances this country has unless we step up and demand change. please contact PAN/MJfox  @ http://www.parkinsonsaction.org  and after June 1st @ http://www.michaeljfox.org/policy

-let them know its not ok to have a monthly struggle just to get the medicines your doctor prescribed or have to choose between basic necessities and affording expensive medications which now include many popular generic brands which in some cases cost the same or more than the brand! and remember to just say No!