battling stigma in PD, parkinson's disease, Parkinson's Health, Parkinson's symptoms

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

memory loss, parkinson's awareness month, parkinson's disease, parkinsons dementia, parkinsons health and beauty tips, sleep disorders in parkinson's

The Conundrum of PD: Are Memory Problems due to Disease, Medications or Both?: By Dr. De Leon

“Understanding (PD) is like trying to put together a puzzle with pieces that don’t fit” -Dave Guerrero.

puzzle brain

Cognitive problems and memory loss issues is one of those symptoms of PD which seem to plague all of us from day one whether we are patients or caregivers.

The thing we must first remember is that dementia is defined as loss of previously acquired skills e.g. washing dishes, cooking, driving etc. Parkinson’s dementia does not occur in typically until late stages. This means that patients would have had a diagnosis and symptoms of Parkinson’s for over 10-15 years before dementia sets in. If anyone has symptoms of dementia present earlier than this than chances are the disease they have is not typical, common garden variety Parkinson’s but a variant which could include things like PD plus syndromes (MSA, CBGD, LBD) or another dementia disorder such as FTD or Alzheimer’s and PD as well as other neurological diseases that can have parkinsonism, like strokes. Having said this, all patients notice a change in their cognition from the very beginning of the disease even before motor symptoms are noticeable.

Does this mean there is dementia? No!

The usual symptoms I am referring to that patients commonly experience are related to personality such as getting more irritable, short tempered, anxious and depressed. Sometimes, we as patients may not realize these subtle changes like increase impatience; but those close to us notice and may call it to our attention or become aware of these changes before we do. At the onset of my PD,  I began to notice increased irritability and frustration especially when working at the office which I could not understand since I was the queen of multitasking. I was NOT alone in my perception my staff of many years also noticed a change in my personality that was out of character for me and something was wrong! Fortunately, this symptom improves with treatment. But, is one of the first signs of PD in most people and if not careful can go untreated for years.

Second, all Parkinson’s medications can cause cognitive changes usually in the form of brain fogginess, sedation, trouble with word finding, and depression which can cause forgetfulness. This is why is imperative to make only one medication change at a time and follow up with your doctor shortly after every new medication change to evaluate outcome and most importantly tolerability. Be on the lookout for cognitive problems due to medications, these symptoms will come on within a week of staring new medicine typically and will aggravate or worsen after each dose intake within a few hours and last as long as medication Effect lasts. This is why it is important to pay attention to medicines and a keep chart of times and effects of all medicines and talk to your doctor if you notice cognitive changes. But be sure, not make changes or discontinue regimen without first discussing with your physician.

Third, because PD usually affects mood as in depression as well as sleep, as in restless leg (RLS), sleep apnea, REM behavior, these if not properly treated can by themselves cause memory loss usually in the form of poor concentration which leads to short term memory loss because one cannot encode information into long term when not paying attention due to being tired, sleepy or fatigued, plus it is through deep sleep that our brain processes all information and makes long term memories.

Fourth, just as our bodies become slow so do our brains in retrieving information, pulling and opening the file cabinets where information is stored can be difficult. It does not mean is lost simply means that takes a little longer. Solution increasing dopa and mental exercises-

Fifth, however after a number of years as PD advances, up to 50 % of patients have a chance of developing PD dementia which is characterized by  psychiatric tones like delusions, psychosis, hallucinations (visual) along with apathy and pronounced forgetfulness. Treat with Acadia; anticholinesterase (e.g. Aricept, Exelon); Provigil (among other stimulants); Namenda as well as antipsychotics (Clozaril).

In my experience as a Parkinson’s doctor, patient, and caregiver the overwhelming problems with memory in the majority of PD patients, unless they are end -stage  disease beginning to hallucinate becoming apathetic which are signs of early dementia setting in, are a combination of  Parkinson’s disease itself  as well as medication (usually not enough). The result of insufficient dopa in the brain as well as not properly treating and addressing non- motor symptoms which interfere with concentration is poor memory. Thus, long term memory appears impaired because the majority of PD patients are sleepy, depressed, under-  and- over -medicated, as well as fatigued. Early recognition of all non- motor symptoms of PD which includes side effects of medications as well as early detection of PD dementia is key, after all even the hardest puzzles have a solution.

Finally, I recommend every patient have a baseline MMSE (mini mental status exam) or Mocha test followed by every year unless symptoms of forgetfulness and apathy or other sings of forgetfulness arise. If depression is significant and can’t tell if memory problems are due to depression or early onset of dementia recommend Neuropsychiatric evaluation. If a person has profound depression unresponsive to meds consider ECT (electroconvulsive therapy) which works great.

The basic understanding of the various puzzle pieces which make up memory and cognitive changes in PD along with the correct treatment will lead to improved quality of life along with decrease chances for nursing home placement or prolonged hospitalizations.

alzheimers, depression and suicide, depression/suicide in neurological diseases, parkinson's disease, suicide in parkinson's

Depression in Neurological Diseases like Parkinson’s: By Dr. De Leon

You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome.” Hunter – Patch Adams ( one of the best performances by R. Williams)

In the advent of Robin Williams untimely demise, a great deal of spark and conversation has ensued around the topics of mental illness including depression anxiety and bipolar diseases well as their connection to Neurodegenerative diseases like Parkinson’s.

Let me begin by saying first that although there is news of Robin Williams’s early diagnosis with PD -we do not have any details on his actual neurological condition or whether he was on treatment or not?

Furthermore, we must recall that it has been said that he battled with bipolar disease most of his adult life. Bipolar disease is more likely to result in a higher suicide risk and suicidal ideation and behavior compared to Parkinson’s. Nevertheless, we should not underestimate the severity of depression in any patient no matter the cause. And anyone suffering any type of mental illness like depression, anxiety, bipolar disease, etc. should seek immediate attention and get under the care of a specialist.

But we do need to be aware of some of the facts.

Depression is found to be more common in certain diseases like Parkinson’s, Alzheimer’s, multiple sclerosis, epilepsy, migraine, and stroke.

This depression is not caused by the fact that patients are given chronic progressive mostly incurable diseases; although, certainly the notion of having these illnesses has sometimes a negative impact on an individual and can accelerate or worsen symptoms. Furthermore, some of the medications used in the treatment of these illnesses themselves can cause depression, anxiety and other mood disorders. (e.g. amantadine, L-dopa, baclofen, bromocriptine, etc. while some meds that are used to treat pain in PD like those in the seizure class-depakote, lamotrigine, carbamaepine, etc.; and of course SSRi’s-Cymbalta, Zoloft, Lexapro, Effexor, etc. can be beneficial)  in the majority of neurodegenerative diseases, the depression precedes the neurological deterioration as a harbinger of  things to common.

In the case of PD, and Alzheimer’s these can be the very first clues of something amiss especially when there has never been a prior history of mental illness, depression or family history of such problems. According to the National Institute of Mental health roughly 18 million Americans suffer from depression yearly with a 12 month period. Depression is characterized by loss of appetite, although sometimes can be the opposite, loss of interest In things that used to bring pleasure and happiness, poor sleep or too much sleep, lack of energy, suicidal thoughts, poor concentration, feelings of guilt, and low self esteem these symptoms last longer than 2 weeks and the key is that the interfere with activities of daily living.

Women are twice as likely to suffer from depression than men which already puts PD women at higher morbidity this compounding effect maybe one of the reasons are now finding out that women with PD have more negative effects (meaning non-motor symptoms) like depression as opposed to men with PD who have more tremors (positive symptoms)…roughly about 50 % to 60 % of all PD patients suffer depression at one point during their illness and about 1/3 of patients present with depression as an early symptom before diagnosis. Yet despite this knowledge, the overall risk of suicide in PD is somewhat controversial. One study, in 2001 in the U.S. including more than 144,000 people with PD found the rate of suicide in general population to be 10 times greater than in the Parkinson’s population while another study done in 2007 in Denmark found the rate of suicide among PD patients to be equal to those in the general population. Another in 2009 said PD patients although appearing to be at higher risk for depression, they truly were not at higher risk for suicide compared to general population of Denmark. Yet, one thing this study highlighted was the  increase in suicidal ideation (thoughts); this was found to be much greater among those with PD than in the general population. This last piece of information is vital to help us remember and keep in mind of the potential for a slip for those suffering from PD. The possibility of suicide is ALWAYS there and given the fact that some of the medications can trigger or worsen or even cause mood disorders, we have to be extra vigilant as patients, caregivers, and health care professionals to discuss this subject at every visit especially when there are concerns before symptoms get out of hand. There are many treatments for depression including medication. I have discovered that in PD patients, the first step is often a matter of adjusting medications if discussed early. In severe cases (ECT) electroconvulsive therapy has been instituted. Treatment of depression and other mood disorders often requires a team approach including a counselor, therapist (behavioral), psychiatrist, psychologist, and neurologist. (Don’t forget about caregivers too- they also have high rate of depression correlating with extent of care)

It is also extremely important to realize that the highest risk and higher than expected rate of suicide noted to date among PD patients has been among those that have undergone DBS particularly in those that had depression or were single. This is why is crucial if you are considering this treatment that you do not partake if you have no social support or have history of mood disorders like depression. (unless absolute last resort and are under strict supervision by a team of specialist as I described above throughout entire life-this is my opinion) Make sure that you seek opinion of an expert that has done thousands of DBS to get best outcome.

So, even though, we have lost a great entertainer and we mourn his loss, his passing although uncertain as to the cause which led him to his final acts of desperation has provided us with a stepping stone to a new beginning of discussions to remember to treat the person and NOT just the disease– no matter if its Parkinson’s, Alzheimer’s, Multiple sclerosis, Bipolar disease or another chronic illness.

Let us remember to keep in mind  all those that suffer mental illnesses like depression …..

If you have questions regarding your Parkinson’s or think that you might have Parkinson’s and depression

… I invite you to call the National HelpLine of the Parkinson’s Disease Foundation at (800) 457 6676 or email us at info@pdf.org.

Otherwise contact

www.Samaritans.org  or www.suicide.org/hotline/texas-suicide-hotlines.html or http://www.suicidepreventionlifeline.org/
http://www.Speakyourmindtexas.org

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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 defeatparkinsons101@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

parkinson's disease, parkinsons health and beauty tips

Revisiting isolation an often overlooked topic in Parkinson’s : by Dr. De Leon

A month ago, I read that as the new year rung in several Parkinson’s patients chose to take their own life. I can only imagine the devastation one must feel to decide to go through with something like this….I was extremely saddened by these events ….wondering where the friends and family were and at what point does one loose all Hope?

So, I thought I would revisit the topic of stigma in PD that I touched upon a few months ago.

From my years of practice, I recall many patients becoming extremely more withdrawn from society due to the physical impediments like decrease mobility, excessive drooling, increase hypophonia ( low-soft voice ) causing individuals to become increasingly socially embarrassed. This reminded me of how PD can be both socially and emotionally isolating. A lot of people that I have met over the years have been afraid to say they had this illness fearing public scrutiny. So, they chose social isolation or minimal contact with others in potentially embarrassing or humiliating situations like dinner parties.
They were afraid of chocking, spilling food & drinks due to tremors or DYSKENESIAs.

People sometimes are afraid as being judged incompetent or drunk due to poor gait, slurred speech or questioning one’s handwriting each time due to micrographia or severe tremors.
What about struggling to get money or credit cards when they need to make a purchase or pay for dinner?

According, to Dr. Julio F Angulo: ” shame is embarrassment felt in private.”
So, no wonder our self esteem begins to erode if we do not surround ourselves with people that love us, support us, and understand our shortcomings…we live in constant dislike and loathing of ourselves and begin to hate and blame our condition and best way to get rid of this fear & shame is eliminate the culprit! Hence, there is an increase risk of suicide in Parkinson’s rarely ever talked about.

But, I say that this does not have to be the case…first of all we as individuals have to realize that all of us embarrass ourselves at one time or another whether ill or not. And that our biggest critic is our selves, other people don’t pay nearly as much attention to our faults and weakness as we might think…they are too busy worrying about their own faults, difficulties, challenges and own prejudices.

Although, is no doubt that having Parkinson’s presents daily opportunities for embarrassing situations, the negative feelings it conjures up should not be pushed down and suppressed but rather discussed with other Parkinson patients. But, primarily they should be discussed with ones own physician or healthcare provider. This needs to be done as soon as first negative feeling arises or sense of shame begins to take root or even when you notice a change in your behavior. For instance, although you might enjoy the company of others you might suddenly find yourself making excuses to avoid social situations.

Your doctor can help you find the right solution which involves a wide array of medical treatments like psychotherapy.
Antidepressants can also play a role in the treatment of these symptoms. Some methods which might be suggested include desensitization, thought stopping, role playing just to name a few.
But, although all these things can be helpful, the main thing that will keep someone from feeling sad, blue and at their wits end is friendship, love, connection to others like ourselves…and above all FAITH!

So, let us not forget to reach out to one another….

I leave you with these words of inspiration..
“dig deep.look within. it’s all there inside you.
Except sometimes…it is not.
Everybody has days when all
The digging deep only turns up mud.
And that’s when you hand over the shovel.
You reach out. You let somebody give you
What you can’t mine for yourself.”

WE ARE STRONGEST TOGETHER, HOLDING HANDS.
From BE Inspi(RED): words of hope and courage.