Source: Go PINK & THINK BIG! : by Maria De Leon
When Hope is gone….by Dr. De Leon
Hope-
Webster defines Hope as “to desire with expectation of fulfillment.” It is more than dreaming; it is possessing within ourselves an expectation that someday a desire, wish, dream, or expectation will become a reality. Hope always looks to the future making our dismal todays bearable for a brighter, happier tomorrow…..without hope inevitably we die as something inside of us dies!
Two weeks ago, I had the pleasure of speaking at New Braunfels along with my friend Israel at the 7th PD symposium held by the wonderful people of Lone star Parkinson’s Society. My topic was depression and although the talk was very engaging I always feel there is never enough time to cover all aspects of such a complex problem.
Since, then I have been thinking a lot about this topic and apparently so has my friend because he has written two wonderful blogs on the subject which have gotten a lot of sympathy while acknowledging the existence of a huge dilemma which is often poorly understood and often overlooked and infrequently talked about in the open within our community.
Israel poignantly and openly discussed his own personal battle with depression in “Looking over the edge” then discussed more in general the heartaches and struggles many of us have face in society and within our own families in “A Giant blow against the stigma that someone with depression is ‘less than’ in our culture” which can be magnified depending on our own culture especially if you are Hispanic like him and I were asking or admitting for help in the mental department can be construed as a sign of weakness and almost taboo! I also discussed my own personal battle with depression and looking into the abyss in my book the “Parkinson’s Diva.”
In the past and in my talks I often discussed things to do to prevent but other than in my book I have not much discussed in detail the 3 main reasons I feel we tend to become depressed. If we understand these basic reasons I believe all the other treatments can be secondary and we will be more likely to be free to discuss with one another our problems breaking down barriers and will be kinder to our own selves!
First look at the warning signs of depression:
Do NOT wait until you are suicidal!!!! This usually does not happen overnight!!
Before suicidal thoughts occur people experience the following:
- Withdrawal- are you suddenly losing interest in social activities thing you like to do -e.g. going to movies, meeting friends, dancing, reading, painting, exercising, going out with friends, dressing up, is your color palette changed? are you wearing darker colors all greys? and is NOT because that’s the NEW style of the season!! This includes lack of intimacy/affection. Becomes a couch potato!
- Lack of hygiene– not grooming- wearing same clothes for days, not showering, staying in p.j.’s all day!! or sweat pants all day and not because that’s all you have.
- Change in eating habits
- Change in sleep habits
- Mood changes- irritable, aggressive, forgetful, tearful, sad, -cries at drop of hat even though sys they are not sad or depressed!!!!!
So when you start noticing these symptoms in yourself/or spouse/care-partner/caregiver points out these issues- first thing you MUST do IS OWN the FEELINGS!!! WITHOUT BLAME – WITHOUT GUILT -THEY ARE PART OF BEING HUMAN!!!!!!
ONLY then can you begin to find the ROOT of problem and find healing-
USUALLY 3 Main Reasons:
1) In Parkinson’s disease as in any other chronic neurodegenerative disease which alters the chemical balance of the brain – depression is a big component particularly when we begin to introduce foreign substances to replace the brain’s natural chemistry. Such actions may have dubious and detrimental results as it did me when I took combination of Topamax and Amantadine each potentiated and magnified each others effect; thus, making me suicidal! Always and foremost when you feel yourself slipping before you are at the edge be honest with yourself ..
talk to your physician ASAP! Review your medications!
2) Fatigue/exhaustion is the second common cause of Depression which can lead us to make poor decisions at times nearly costing us our lives. First of all PD can have intrinsic fatigue compounded by loss of vitamin B12 and D which worsens fatigue. If you are like me you don’t want to let PD have the better of you and you toil to regain the life that you once had but that is impossible!! the sooner you accept that and let go of the past and make new goals and live a new life within the compounds and framework of the new talents and skills learned and acquired via living with Parkinson’s the happier you will be. Remember life still goes on – there is a whole world out there outside of PD and it won’t stop because we have PD. We have to learn to prioritize our time and energy and listen to our own bodies and not say YES to EVERYTHING even if it has to do with PD causes!! Even Jesus said NO! He knew how to replenish HIS energy and HE is GOD!; Don’t you think we need to listen to our own bodies? WE need to rest at times so that we can make the right decisions, think with clarity, don’t feel like the weight of the world is against us and more importantly don’t begin to feel overwhelmed to the point of losing hope because we can bear another day of struggle. ‘Let’s not over extend ourselves and ignore that soft quiet, inner voice begging for rest.’ [Parkinson’s Diva]
3) In the end the most important reason, all of us get to the edge of that abyss is because at some point there is a faltering of HOPE!! The substance of Faith which propels all of us to move forward despite adversity against all odds is that deep feel that in the end things WILL work out!!! As Plato once quipped, “one cannot heal a body without first healing the soul.” Healing always comes from within and in all my years of practice, illness is truly a disease of the soul. it is how we perceive it, how we feel it how we deal with it- what we expect of it that truly makes one person be cured or live better than another with the exact same illness! sometimes we want to fill our void with things which don’t satisfy. Sometimes, we lose someone we love and that devastate us- but we should think if that love one would want us to give up and/or be sad?
Today, I say to you who are lonely, sad and depressed. You are not alone and there is no shame to feeling this way. It is perfectly Human !
REPEAT AFTER ME:
THERE IS NO NORMAL
NO PERFECT
& WE SHOULD NOT FEEL ANTHING OTHER THAN WHAT we feel- own up to your own feelings good or bad and move forward!
We have all felt sadness; but if your symptoms are lasting over 2 weeks and not getting better and especially if having thoughts or wishing to DIE- need to talk to your doctor ASAP!
Finally, ask yourself is this because of medications? or family history ? or have I been putting myself out there so much taking care of everyone else’s needs I have neglected to take care of my own self? Perhaps you simply have lost your way and lost Hope and find no reason for going on one more day! But I want to remind you that it is always darkest right before dawn so hang on just a bit more and light will come and things will change find a new reason for living take one hour at a time. Remind yourself how far you have come- how much you have accomplished to just give up and quit. Say to yourself, I have made it till today I can go one more hour and reach out to a friend -do not isolate yourself! Write down all the good things you have in your life when you feel despair.
If we dare to be free- we are going to have to exercise some courage and hold on to HOPE. We can live without food for a few weeks, days without water, 5 minutes without oxygen, but we CANNOT LIVE A SIGLE SECOND WITHOUT HOPE!!!
‘You will be secure, because there is hope; you will look about you and take your rest in safety.’ JOB 11:18 international version
Woman to Woman Parkinson’s initiative : by Maria De Leon
Women & Parkinson’s Initiative: An Introduction : By Maria De Leon
Clearing the Confusion about Confusion in PD with infections: By Dr. De Leon
Last week was a particular bad week for me, not only did I have a raging UTI-(urine infection) but boy was I in a state of fogginess and confusion which lasted all week. I was drowsy, sleepy, and unusually lethargic and could not remember anyone’s names to save my life. I was equally distracted leaving a trail of medicines all over the house because I would set them down to find water and then forget all about the medications which did not help the matter. In the middle of the week, I passed out around mid-afternoon out of shear fatigue only to awake in a panic state. It had gotten dark because it of the rain, I did I not know where I was nor what time it was. So, I started walking towards the living room staggering like an inebriated person holding on to the hallway walls only to crash into the doorway slamming my forehead right into the edge of as I was turning. This did not help my delirium one bit either. It left me seeing starts.
As I look up in a dazed stupefied state I see my husband standing in the middle of living room he appears to be speaking to me while pointing at a box on the table; but all I hear is ‘wah wah woh wah wah’ suddenly I felt like I was inside a Peanuts comic strip T.V run! I had to grab him by the shoulders and say “Stop! What?” Again all I heard was same thing so I said “where is my daughter?” At which point he turned around mumbling something and walked out the door then it dawn on me he was going to pick her up but still I could not understand why he was pointing at the box at the table? Until he came back and explained again 30 minutes later and asked what was wrong with me? To make matters worse the flowing day, I went to my usual grocery store to do some quick shopping since was feeling so out-of-sorts. But when I got there only worsen my anxiety and heightened my confusion since my local Kroger’s decided after 15 years to rearrange very isle.
I describe these events so that you know it can happened to the best of us and that there is a reason and you know what to do so you don’t wonder all week as I did. I thought initially I was run down and not taking meds as scheduled was not making me think clearly (which I am certain did not help my concentration). However, it dawn on me, only towards the end of my antibiotic course, the cause. I had dealt with this before in my patients and never thought it could happen to me since I had taken these antibiotics before.
Coincidentally few people I know where also having infections and UTI’s and having problems so I decided to write about this to clear up the confusion regarding the confusion.
First Two things to remember:
1) Parkinson’s disease is a slowly progressive chronic neurodegenerative disease – which means that no BIG sudden changes OCCUR or SHOULD occur from day to day or week to week. Yes, we all have ‘good days and bad days’ meaning our stiffness, slowness, fatigue, walking tremors etc. may be a bit better or worse due to stress, poor sleep, weather etc. but should not be DRAMATICALLY different and definitely NO NEW SUDDEN symptoms should occur!
2) Having said this, however, unfortunately there might be new changes or symptoms that DO occur SUDDENLY these ARE NOT related to PD but caused by other problems. The most common change or fluctuation people with Parkinson’s experience in this department is change in cognition or poor memory or confusion also known as delirium, encephalopathy, or mental fogginess.
I know some of you might had wondered if were getting dementia in my situation?
So how do you know what to do and if you are getting dementia?
First, Older Parkinson’s People that get confusion, disorientation, and mental fogginess with mild infections (of which UTI’s are the most common) and dehydration are those who are already diagnosed with Parkinson’s dementia, have an early onset of dementia pushed to forefront by these conditions, or those with Parkinson’s plus syndromes such as Lewy body dementia. These are usually persons with advance Parkinson’s disease who are usually older as well.
Second, However, young people with Parkinson’s are less likely to have dementia unless they have an atypical Parkinson’s. Having said this the reason, they might get confused and disoriented is almost always medication related as was my case. Certain antibiotics especially those used for treating urinary infections can cause confusion, disorientation delirium and encephalopathy in young healthy people more so in Parkinson’s patients. These medications are in the class known as quinolones common ones are Levaquin and Ciprofloxin. Sometimes penicillin can do the same thing but these are not typically used for urine infections/ rather for other skin infections or upper respiratory infections.
So if you experience an acute and sudden change such as weakness, numbness, confusion, hallucination, speech problems, vision problems etc. contact your physician immediately.
If it’s a new sudden cognitive change and you have had Parkinson’s for long time and you are older it may be that there is an underlying dementia that is undiagnosed along with infection, dehydration which is unmasking etc. sometimes Strokes can also cause these symptoms as well as other metabolic abnormalities such as thyroid disease, vitamin deficiencies (B12 & D) and diabetes.
If you are a young person with PD and get confused, disoriented before any antibiotics then probably you have an atypical Parkinson’s like Lewy body dementia. Unless you already have diagnosis of thyroid or diabetes etc. If it occurs after antibiotic treatment it’s probably the antibiotic especially if it’s a quinolone or penicillin.
Fortunately my confusion cleared up completely as soon as I remembered Cipro could do this (more common in older persons). I will not be getting ciprofloxin anymore!
Rarely people can get meningitis as source of confusion but would be incredible sick -nauseated, vomiting with headache and fever along with stiff neck so very different picture.
I hope that your confusions also get cleared with this information regarding changes in cognition in PD with infections.
Sources:
http://pdring.com/other-drug-interactions-with-parkinsons-disease-medicines.htm
Tips on How to Maintain Dental Care & Oral Hygiene In Parkinson’s Patients: By Dr. De Leon
As most of us with Parkinson’s experience an increase in sugar and chocolate consumption and cravings especially nearing the season of Halloween, followed by Thanksgiving then Christmas around the corner ….lets maintain good dental hygiene. Parkinson’s can affect care,as well as cause unique oral symptoms …so please read on..
“Be true to your teeth, or they will be false for you.” Soupy sales
It is true that Parkinson’s in rare instances has been diagnosed by very astute
dentists who saw tale tell signs and referred them to a specialist who confirmed
diagnosis but this is the exception rather than the rule. So, it is up to all of
us who suffer with or care for someone with Parkinson’s (PD) to educate other health
professionals about our symptoms including our dentists.
This education begins with a thorough medical review of medications, symptoms. Your dentist
should as a routine monitor your blood pressure and other vitals and always discuss
any medical issues and changes to your medical regimen which might impact your dental care
in any shape or form.
For you see, as many of you have already figured out, having Parkinson’s can present a very complex
and unique…
View original post 1,618 more words
Tips for preventing falls and hip fractures in Parkinson’s patients: By Dr. De Leon
First let’s look at the general population in order to understand how big a problem this is and how to avoid falling if possible.
The number of falls increase with age. The reason for this increase is due to a number of contributing factors such as poor vision, decrease hearing, loss of balance, dizziness, and medication effects to name a few. Among older adults, falls are the leading cause of death especially over the age of 65 since in this age group yearly there is a report of 1 out of 3 people fall. These falls often result in emergency room visits due to lacerations, head injury, and fractures commonly of the hip. Older white men are not just more likely to fall and break a hip and die as a result. Although, women have a higher incidence of fractures particularly twice as much as men death rate not associated with them as for men.
Now, add Parkinson’s disease to this equation where the typical Parkinson’s patient still is a white older male; we are really setting ourselves for a whole lot of troubles unless we begin to recognize the risks and begin preventive measures to avoid and minimize not just falls but serious injuries such as hip fractions. Parkinson’s as we all know is a chronic progressive disease which means most of us will live with it for at least 20 years. Even if we have YOPD at some point we will reach and possibly surpass that age limit for which we become at higher risk for falls. If falls occur later in life after age of 75, studies have shown that individuals are more likely to then be admitted to long term care facilities usually indefinitely.
RISKS For FALLING:
- Advancing age
- Gender-male
- Advanced disease stage
- Freezing
- Dyskenesias
- Orthostatic Hypotension
- Loss of balance
- Stiffness
- Visual problems
- Stooped posture- it tends to put the point of gravity forward making it easier to lose balance and go head first.
- Dizziness (vasovagal reflex)
- Medications-(especially using more than 4)
- alcohol
- Problems with executive function- forgetting how to walk- consider getting chairs with lap buddy.
- Sleep disturbances
- White male
- Housebound
- Lives alone
- Difficulty rising from chair- get one of those self lifting chairs
- Use of assistive walking devices
- Previous falls
- Foot problems- e.g diabetic neuropathies, neuromas, arthritis, gout
- Environmental hazards
- Risky behavior-impulsive- consider alarm systems
- Confusion/cognitive problems –i.e., dementia
As you can see there is an extensive list predisposing PD patients to falls but in general advance in age, with advanced disease plus poor vision, and cognition are primary players in determining risk of falls and hip fractures. Our goal is to learn to recognize these symptoms so they can be treated in order to reduce risk most are modifiable behaviors except for age, ethnicity, gender, and disease state.
Steps in reducing the risk of falls / hip fractures:
- Eliminate external factors which can increase falls – open spaces for walking, decluttering, and use floor designs with horizontal pattern to aid in movement. Avoid standing on ladders/chairs. Increase lighting throughout living areas and use night light using only non- glare 100 watt or greater incandescent or fluorescent bulbs. Get glasses with tint in them to help with contrast. Staircases should have non slip surfaces and if needed a stair lift placed. Consider medical alert bracelets- many to choose from. Remove rugs. Wear appropriate walking shoes- do not go barefooted. Make sure assistive devices are the right length. Remove any cords. Use bath aids and rails installed in shower and in toilet area- this is one of the most common areas PD people fall especially in the night!
the reason sometimes is due to a vasovagal reaction/passing out. often with meds modified problem is solved but sometimes have to add things like midrodine to raise BP or in rare cases place a pacemaker.
- Improve home support- do not be alone.
- Increase socialization- join a water aerobics class/ tai-chi/ senior centers, support groups
This includes getting into a regular exercise regimen – having a friend join you while you walk or swim is much better!
- Modify Medications-**** most important**** –since medication side effects can cause a lot of the risk factors for falls like confusion, sleepiness, dizziness, low blood pressure. Periodically need to review ALL medicines this includes over the counter and natural supplements!!
- Keep diaries of times when stiffer, dyskenetic, having any other problems so meds can be adjusted accordingly and may even need to consider surgery such as deep brain stimulation for dyskenesias if that’s the main cause of the falls.
- there are many new medications used to treat low blood pressure /orthostatic hypotension such as midrodine, florinef, northera along with compression hose and other tricks to prevent pooling of blood in lower extremities- can be taught by PT/OT
- Provide ancillary services –such as PT to improve balance, OT to modify home; both can recommend aid like visual aids or walking devices, helmets to protect brain/skull, etc.
- Involve all of the medical team- multi-specialty. Check for other medical illnesses (strokes, diabetes, high blood pressure, heart disease, cancer, and inflammatory illnesses like arthritis). Evaluate vitamin D levels since these are usually low in PD and can cause confusion and lead to increased risk of fractures due to an increased risk of osteoporosis. Evaluate B12 levels these too are commonly low in Parkinson’s patients which can lead to fatigue, muscle weakness, dementia, and neuropathies. Women may need hormone replacement to increase bone density. Remember that there is an increase in hospitalization and recovery and slightly worse prognosis for PD patients who have hip surgery. MUST prevent at all cost!
Sources:
http://www.pdf.org/en/fall09_fall_prevention
http://www.cdc.gov/homeandrecreationalsafety/falls/adultfalls.html
Getting ready for the fall- the PD diva way: by Maria De Leon
Could Parkinson’s Disease Cause or At Least Increase the Risk of Asthma? By Dr. De Leon
“Breathing is the greatest pleasure in life.” ~ Giovanni Papini
They say doctors make the worst patients- I am no exception. In my entire medical experience, I have found that those of us who work in the medical field when confronted by illness typically have the worst most complicated and rarest disorders. I am any primary doctor’s and sometimes specialist’s worst night mare. If I were my own patient, I would be pulling my hair at times because trying to maintain a balance in such delicate system where the slightest shift throws everything (me) into total chaos is hard to manage to say the least. As predicted by Murphy’s Law, I am not an easy patient to manage. To complicate matters, out of the clear blue I have develop asthma of all things…
I thought for sure I had one organ system intact that I did not have to check a box in the review of systems form. C’est la vie! I suppose. Yet, I often feel it might be easier for my doctors to ask me what I don’t have than the reverse. So, while I waited for my appointment to see my pulmonologist (one more specialist to see and coordinate care with!), I wondered why it was that I am becoming asthmatic; of course my first thought was to blame the radiation therapy I received for my thyroid cancer …but then again…it seems like Parkinson’s, at least the type I have LRRK2 gene, appears to be associated with inflammatory disease all of which are immunological in nature. What is asthma after all? But another autoimmune disease problem. I thought could there be a relation between my PD and asthma? Then, today I see an article talking about an increased risk of PD in those with asthma.
I began to think some more about the matter, a dangerous thing I tell you; But a sign that my dopamine is working JUST fine!
We know that asthma is widespread (~235 million worldwide) because of prevalence is easily identified and diagnosed as opposed to Parkinson’s despite the nearly 7 million plus worldwide. Because PD can have a very prolonged prodrome (pre-motor period) making diagnosis more challenging in the earlier stages. Playing devil’s advocate here- perhaps biasing results towards asthma leading to PD.
This led me to launch my own search of the literature for association between PD and asthma and unfortunately not unlike a lot of things in medicine in which we don’t have an answer the results are all over the place. Yes! PD can causes asthma. No! Rather asthma causes PD. Asthma prevalence is higher among those with inflammatory bowel disease such as ulcerative colitis which we know is more common in those with LRRK2 gene. One thing is for certain there is a clear relation and association between the two. The question remains to find out which came first the chicken or the egg?
In meantime, although most commonly patients experience shortness of breath particularly in advance stages due to wearing ‘off’ periods and stiffness of respiratory muscles; it may perhaps be worthwhile to keep in mind other possibilities and not assume it’s related to Parkinson’s medications directly because an asthmatic attack can be life threatening. There are more than 3,600 deaths per year due to asthma. While all the details are sorted out especially if you are like me (female gender higher risk) are LRRK2 carrier and have had or have other inflammatory immunological diseases such as ulcerative colitis / Crohn’s disease and have shortness of breath – at least consider the possibility of Asthma.
Things to look out for that are common in asthma:
- frequently Coughing especially at night
- Wheezing or coughing after exercise Shortness of breath or losing your breath easily, short winded
- Chest tightness, pressure, pain
- Feeling tired, fatigued, easily upset, grouchy, irritable, or moody
- Trouble sleeping
Sometimes may be hard to differentiate since most of them can be seen with PD when in doubt consult your physician. Of course if shortness of breath gets worst with exercise or during cold weather or during viral infections like a cold, all of these are indicators of possible asthma Follow up with your physician immediately!
Now, I have one more medicine to carry in my already overflowing medicine bag…. but breathing freely once more. You, too, may be in need of some extra evaluation if experiencing any of these symptoms and not improved with increasing dopamine. Don’t Delay & BREATH HAPPY!
Sources:
defeatparkinsons 