Till death do us part in dealing with chronic illness such as Parkinson’s disease…By Dr. De Leon

“There is simply no medicine that will cure what happiness can’t cure.”
~ Gabriel Garcia Marquez

In a time when marriages end faster than we can say “I do” how to make a marriage work in the midst of living with a chronic illness is no easy feat.
Establishing a balance with your partner can be a daunting task. After living with a chronic illness for more than ½ of our marriage, I have learned a few tricks to make things work better and keep the flame going. This requires a great deal of love, patience, forgiveness, and mutual respect.
We must think first of marriage and romantic relationships as an empty treasure chest. Here we put for safe keeping all our goals, dreams, desires, expectations and most prized possessions that speak of our past and our future. But, we can only draw from it what we have made a point to store like congeniality, love, gratitude…
Every relationship is made of two people- keep that in mind as you try to navigate the muddy waters of keeping romance alive when you or your partner feel like you are drowning.

The expectations vary according not only to the stage of the relationship newlywed vs. veteran but equally or even more important (to finding ways to maintain the flame alive) is the stage of your disease.

Also remember that men and women handle bad news differently. In general men tend to want ‘to find a solution to the problem’ of PD even when there is none.
If you guys recall the movie ‘Love and other drugs’ in this story of a man who falls in love with a woman with young onset Parkinson’s ends up in medical school – his way of trying to control the situation. He also insists on enrolling her in every available trial. This type of thinking can lead to many problems down the road starting from the point that focusing all of the attention on a loved one and neglecting one’s self only leads to resentment and burn out. Plus, because every person is unique sometimes less is more as in my case. I have a very small threshold for maintaining my biological equilibrium sometimes even the slightest change can lead to severe disruption and drastic consequences. Hence both my husband and I as well as my physician have learned to be very cautious and not overly aggressive in my treatment.

Similarly, when we concentrate in a single aspect of a person’s life like their illness we reduce that person essentially to that characteristic – in this case a patient.

Once your partner equates you as a ‘patient’ or person who needs to be ‘cared for’ particularly if long term, the romance tends to go out the window and many times if there are minor problems these can be magnified leading to resentment on both sides and even separation.

To avoid falling into that trap, I suggest that both parties maintain their own independence, their own goals, and dreams as long as possible particularly in the early to mid-stages of the disease when a person with PD is more than capable of caring for themselves.

If self-care is needed try to incorporate and ask for outside help from friends, family, etc. I am not sure if any of you remember seeing a documentary on 20/20 a few months ago about a couple dealing with Alzheimer’s disease. The documentary involved following a woman who had been recently diagnosed with dementia. At the beginning of the piece a few months into diagnosis of the wife, the husband was 100% committed to taking care of her no matter what and refused any time of help. However, as the documentary went on over the course of the next 5 years (not very long), the husband became more and more distraught, depressed, bitter and utterly despondent. He wanted nothing to do with her care which ironically was now the time she needed him the most. She had reached a stage of complete dependency.
Don’t let this be you and your loved one. When you suffer so does your loved one. Their well-being is dependent on your own well-being so save your energy and strength for the right time and focus and making memories together and enjoying life together for as long as possible.

After, a decade of living with PD and many ups and downs, my husband and I have worked hard at keeping the romance as well as our own goals and independence by not allowing him to become my care giver or even care- partner in general. However, there are times he has to assume this role briefly when I am facing new serious issues when I am simply unable to care for myself such as when I was facing possibility of new cancer recurrence. He was with me every step of the way not necessarily as a care partner but as a supportive spouse.

The majority of the time, I go to doctor’s visits alone or with a close friend. I don’t ask him to come with me to PD conferences or support group meetings. I encourage him to have his own support group and spend time pursuing his own goals. As with all relationships, there must be a give and take; sometimes I take care of him and other times he takes care of me.

I try to maintain my role as wife, mother, friend and lover. I understand that it is impossible to continue seeing someone as sexually enticing after spending all day or week doing things that the other should be able to do on their own such as feeding or grooming.

However, that is not to say that with each stage intimacy can’t still exists. Not only do we require as couples physical, sexual but also emotional intimacy. It is important to spend time alone as a couple doing whatever brings joy and unites the couple. Intimacy must and should be maintained even in the absence of sexual bonding. In fact as a couple grows and develops particularly in the face of chronic illness is the emotional bond that sustains a marriage or a relationship. In the face of adversity we either crumble or we become stronger. I am glad to say that in many ways living with PD has made my relationship with my spouse much stronger.

The key to living well with a chronic illness is open communication!

• Start with breaking down barriers- sexual/emotional/physical: important to recognize that sexual intimacy does not only mean (vaginal) intercourse. This is of the utmost importance because many women with PD suffer from decrease libido, vaginal dryness, and trouble achieving orgasm while men have erectile dysfunction, and trouble with ejaculation. Talk to your doctors about these issues and communicate with one another to find ways to still enjoy each other.
• Find a way to reconnect (what did you like to do as a couple prior to PD?)
• Talk to your doctor about sexual issues and problems with performance as discussed previously- there are many treatments for these.
• As a partner in the care of a loved one – try to see things from their point of view and vice versa.
• Allow for personal time and personal growth- this is a life changing disease which you will have to learn to live with if you want to be happy
• Look for new ways of doing things
• Find pleasure in simple things like taking baths together
• Spend time simply touching – power of a touch is immense- a good hug can be just as rewarding
• Find outside help to do chores
• Don’t go at it alone (recall documentary), this is a sure way to burn out and become depressed, desolate and resentful.

Just like parenting one must learn to pick the battles when to step in and be concerned and when to let them handle their own problems and issues. Pace yourself this is a marathon not a sprint race.

All rights reserved By Maria De Leon


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