Musings of a Parkinson’s Night Owl: By Maria De Leon

“Every Renaissance comes to the world with a cry, the cry of the human spirit to be free…” Anne Sullivan Macy

 

The other day as I stayed up half the night like most of us with PD tend to do, I was too tired to read, or write and too restless to lie quietly in the dark. I decided to make my way to the Living room and surf the T.V. channels. After a few minutes, I stopped as I recognized an old movie which I had not seen since medical school “Lorenzo’s oil.” A movie starring Susan Sarandon (for which she won an Oscar) and nick molten about a child who develops a neurological illness known as adrenoluekodyatrophy. This Terrible condition occurs only in boys because is x-linked causing behavioral problems, blindness, deafness and eventually death. As I began to watch a wave of emotions took over me realizing how long it had been since I first saw this movie trying to remember my first impressions and how different they probably were from now having had the opportunity to treat many similar patients. Recalling my last little boy whom I diagnosed and the sadness and hopelessness i felt as I saw him drift into darkness and eventually succumb to death. Remembering the pain, anguish, and despair her mom felt upon confirming the diagnosis, never once remembering that movie.

Now as a seasoned neurologists, mother, and patient I found myself being completely enraged at that mother’s behavior. Wondering what I would have counseled if I were the attending physician on that particular case and weighing my options as a mom and patient. Surprisingly my decisions would have all led to the same path – let the boy die with dignity since he suffered for at least 3 years as he descended deeper into a coma only to slowly come out after years of seizures and suffering regaining some hearing and vision but remaining quadriplegic and bed bound for life. I wonder what he would have said about his life. The lack of choice in the matter. In the end, I wonder if he would have said it was a meaningful life. of course the fact that he survived such ordeal when he was aspirating and suffering asphyxiation continuously for years speaks volumes to the strength and power of the human spirit and to the  fact that life is not in our hands but that of our God.

The parents life revolved around the illness of their son from the moment of his diagnosis- the first rule of living with a chronically ill patient is not to make the disease the center of life. This is giving power and admitting it is stronger than us.  How often we as caregivers make life decisions based on denial or guilt? Sometimes we have to learn to let go and not stop living ourselves. We as caregivers are just as important as the patient. This does not mean we abandon our responsibilities or wash our hands of it rather we must find a way to maintain our own health, goals, dreams in spite of another’s need for our complete attention. We don’t refuse help from others or alienate ourselves from the world as this mom did. Important not to neglect relationships like marriage. Other children, siblings and friends as this couple did.

I am afraid too often we think we are invincible or too proud to let others lend a hand.

Plus, in dealing with any chronic illness we have to avail ourselves of an entire medical team especially if we want to change the science. As I have written before respect is essential for a good patient- physician relationship. Both parties are equally important to advancing knowledge and science of any disease. Anytime one party thinks they can work alone will only truncate progress. This is what unfortunately happened. Although the parents discovery of “Lorenzo’s Oil” was a major breakthrough because it did not go through proper channels of being tested within the confines of medical science, the treatment has mostly fallen into oblivion and rarely discussed in any medical settings due to the controversy and animosity it created among parents of patients with similar disease that were desperate for cure as we are now with PD an the neurological community who was painted as insensitive and uncaring to the needs of their patients.

Remember the saying never bite the hand that feeds you…doctors and neuroscientist have the scientific knowledge and experience of a thousand patients we only have one – ourselves or our loved ones. However, by working together we can fill in the gaps. So let’s not hastily take non- recommended treatments without discussing with our physician’s because if truly beneficial if done outside the confines of scientific methodology few people will reap the benefit as has been the case of the treatment with this oil which according to small studies if used early on in this disease can halt its progression.

This year let’s make waves by working together for a cure!

 

Seasons of Support! By Maria De Leon

take a deep breath and trust in God.:  As the holidays draw near, I am reminded of all of those of us who are grieving for the loss of a spouse, parent, friend or loved one. All loss whether physical or emotional can take a toll on those of us who are still grieving which can heighten our stress, depression and isolation if we are not careful. As the season for family and close friendships come together to celebrate the absence of a love done no longer present in mind, spirit or body can be quite troubling for many of us.

A couple of days ago, I solemnly celebrated  and mourned the passing of my father a year ago. Although, I have for the most part accustomed my self to the notion that he is no longer present in this world, as we prepare for Thanksgiving celebration, I can’t help but feel a sudden pull at my heart.

Thus, I began to wonder about my many friends and readers who have recently lost a loved one due to Parkinson’s disease or another illness if the mention of the loved one still causes emotional or spiritual pain leading to anxiety and stress? For those of us whose loved ones are still alive but no longer able to interact or be the person they once were due to this illness, we too maybe in morning feeling the same heartaches, wondering when will this be over? The hurt, the pain, the anxiety, sleepless nights, will we ever feel whole again? be able to return to a routine?

While many people commence to cope and slowly return to normal after 6 to 9 months, about 2 years after someone passes away most individuals begin to feel life anew and feel “normal.” Yet, there is no set time for getting over the grief of bereavement particularly if that person is still living and continuing to decline.

Holidays, birthdays or anniversaries can remain a source of pain accompanied by bittersweet memories that may last a long time even a life time. For me having lost someone I loved very much 7 years ago, although the initial pain is gone holidays always remind me of their absence from my life.

Before healing can commence, we must allow ourselves to properly grieve and not hold  it in. this may be a reason why so many people still struggle with the grief even years later making life much more difficult, painful, and devoid of peace.

My suggestions in dealing with any type of loss:

Be gentle with yourself as you journey through the process of grieving.

  • Give yourself time– time DOES heal all wounds but you must be able to let it go at some point and walk away from the pain. Think that either they are in a better place, no longer suffering from illness or that this too shall pass for nothing in this world last forever! Concentrate on making that one person’s life happy and meaningful and everything else will come into place.
  • Feeling– don’t be afraid to let it all out, don’t be taken back by strong emotions. I thought that being a doctor and having been there through the entire ordeal of my father’s cancer I was ready to let go when he passed and I was completely overcome with emotion after his passing. I could not believe the wave of strong emotions that flooded my heart and brain so I cried and grieved till it was time to let go. now even though I miss him truly, I am no longer grieving for his loss- I know he is in a much better place. Research actually shows that tears help restore the chemical balance in your brain, so don’t be afraid to let the water flow it will only serve to restore your health. if you are one of those people that have trouble letting the tears go sometimes a good sad movie or book is just what the doctor order for catharsis. Feeling sad is much better to the alternative being numb to emotions.
  • Talk therapy– find a strong friend who will stand by you in silence as you release all of your fears, frustration and grief. a good shoulder to cry on is essential for healthy grieving.
  • Art Therapy– sometimes no matter how much we try to cry or watch all the sad movies, we still have a hard time copping and letting go of our anger, sadness, disappointment, and guilt. one way I have found many people cope with loss whether physical, emotional or spiritual is through art therapy. sometimes writing the feelings down in a poem, other times through painting -exposing our feelings on canvas – or through mask making, as my friend Wilma Cordova professor at SFA university School of Social Work recommends.
  • Take care of yourself– this means eating right, sleeping well, exercising- believe it or not when we grieve the reason we tend to sleep so much is because that kind of sadness requires a lot of energy to be able to overcome the pain the brain is experiencing. Consider getting massages and allowing others to hug you or touch you, this releases oxytocin one of the essential chemicals in the body besides dopamine, serotonin, and endorphins which maintain healthy brain equilibrium.
  • Finally find a good network of support– to help navigate the ups and downs of the days ahead, one who will encourage your well being, will listen and even accompany you to art therapy and above all make you laugh! After all laughter is truly the BEST MEDICINE!

If you are a caregiver or friend of one – remember these words:

The After Loss Credo~ B. H. LesStrang

“…Don’t worry if you think I am getting better

And then suddenly I seem to slip backward.

Grief makes me behave this way at times.

And Please, don’t tell me you ‘know how I feel’

Or that ‘is time for me to go on with my life’

(I am already saying this to myself

what I need now [most] is time to grieve, to recover & a friend..”  

For more information on grief & loss contact: http://www.pdf.org

community social workers/ your physician ASAP- if still grieving especially if not able to sleep, having chest pain (or tightness), headaches, fatigue, & breathlessness.