3 Tips to Making the Most of the Holidays: By Maria De Leon

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“People change when they realize they have the potential to change things.” Paulo Coelho

Here we are again approaching what many people feel is one of the most stressful periods of the year although its intention by design is to be one of a joy. Adding a chronic illness to the mix can make things more volatile even in the best of circumstances.

As a neurologist, this was always the season I dreaded because I knew that I would have to take care of many sick people whose depression, loneliness, hopelessness, and general stress invariably exacerbated an underlying chronic illness causing them to decompensate.

In order to avoid this scenario- the following should be considered.

Have a plan

This means you have to be realistic about your health and family situation. If traveling is difficult ask members of family to come over to your place instead. If this causes too much chaos or is not feasible for others to travel either then consider gathering with close friends or a smaller gathering with loved ones.

As most of us that live with chronic illnesses will attest to the fact that mornings are usually not our best time. So don’t kill yourself trying to have everything ready by lunch time. Take your time, and ask to meet later in the day when you are more likely to be at your best to enjoy the fellowship. Focus on fewer but more meaningful interactions. This way if you have trouble speaking you can more easily focus on one on one conversation. Make sure to maintain eating and medication schedule throughout the holidays.

Do things that make you Happy

This year my family and I have decided that instead of rushing to see other relatives, not knowing how I will feel that day while feeling pressured not to let anyone down especially since those members have schedule constraints, we will leisurely arise and enjoy a meal at home. I love watching the Macy’s parade, this year I plan to enjoy it in my p.j.’s sipping some hot cocoa with my daughter and nephew by my side.

Rethink the Big Picture

Before you commit to anything, ask yourself what are the pros and cons of doing whatever it is you are doing? Will these activities give you purpose and joy or leave you more frustrated and worn out? Or worse cause you to decompensate physically? Having a clear purpose in mind can be extremely gratifying as well as help reduce stress and burden brought on by PD. My main purpose now is spending as much time as possible with my daughter who will be leaving for college soon. Making her happy and enjoying her company is my principal motivator for making this season the best ever.

Find your purpose to enjoy the holidays this season which will leave you not only with great memories but a sense of well-being.

BEST GIFTS ARE THE ONES THAT SPARKLE!!!! So let your inner DIVA sparkle this holiday season!

 

Painting by Ross Webb

@copyright 2017

all rights reserved by Maria De Leon

Adventures of a PD Diva At Girl Scout Day Camp: by Maria De Leon

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Seems like no matter what I do trouble always finds me. Benefit usually is a good story for years to come.

As some of you may know, I have been dealing with chronic upper respiratory infections and severe bouts of asthma and bronchitis since September. Each time I think is over – wham there it comes again! I feel like that mucus family shown on T.V, about some decongestant medicine, have decided to make my body their permanent residence with kids, in-laws and pets. My friend says is because I am too hospitable …so I have taken to sing Taylor’s Swifts ‘shake it off’ see if they decide to go and even added ‘somebody I used to know’ by Gotye. But nothing!

This chronic hacking and coughing is becoming a major inconvenience to say the least. A couple of weeks ago, I was asked to help out with Girl Scout camp as first aide – sure I said since my daughter was volunteering as well and I seemed to be back to my usual cheery disposition without a sign of infection insight. No later had I finished committing myself did I start feeling ill again. I thought this will pass by time weekend comes around. Plus not only do I enjoy an opportunity to be involved in my daughter’s life and activities especially since our time together is drawing near as she heads off to college soon; but I still have to drive to and fro.

However, the crud which has remained a mystery as to the cause was not letting up rather seemed to scale up a notch. I called the person in charge of event and asked to find a replacement, since I was not up to the challenge at that time. I was reassured this would be handled.

But as always this seemed too easy. The morning of my commitment to drive daughter (thinking I would just drop off and get back to bed) I was difficult to arouse from sleep having ingested more cough syrup with codeine. Many years ago when I was prescribed this only effect it had was making me have a very restful sleep with no further sequella throughout the day. Husband warned me that I may feel the effects longer this time- I should have believed him. Here I was listening to my daughter putter around asking me to get up because we had agreed on going to breakfast before camp yet I could not even oven my eyes or form cohesive sentence much less in English. Finally, after what I thought was only 15 minute of sleep actually close to 2 hours, my daughter’s frantic yells awoke me. I stumbled out of bed completely discombobulated unable to walk a straight line much less change. I seriously contemplated driving her in pj’s but I still had to steady my vision and equilibrium before attempting to drive.

Thank goodness for Center Island which helps me recline and hold on to when putting clothes especially pants. Already time constrained did not want to spend time searching for some stretchy pants so jeans it was. You all know that jeans are difficult to put on any normal day now imagine being bloated, nauseated, dizzy, shaky, and stiff? I was like a ball inside a pin ball machine bouncing all over the place.

Once on the road, I tried to focus but we missed the turn and made a few loops before we got to our destination. All I could think was getting back home and in bed.  But because we were late gates had been closed to the camp and daughter asked me to accompany her inside. On the way, we ran into the person in charge of the day’s events and asks who we were. – I said, ‘this my daughter with troop …’ not recalling number. The lady in charged proceeds to tell me she was waiting for Dr. Maria De Leon- the first aide-to arrive.  I took a huge gulp taken aback, thinking to myself why did I come? I should have had a friend drop off and why on earth was I still assigned to this duty?  I believe my shoulders and posture dropped even further down.

Why was this happening to me? I was having chills again, hungry dizzy, with severe cotton mouth which did not allow me to speak cohesively. Finally, I managed to ask, feeling faint, if they really needed need at that point? Of course my daughter having heard that they had not cancelled me felt bad but scurried away, not before saying ‘mom please be careful and take care.’ I asked for an hour wishing to take a nap crash. In reality I need to take rest of my medicines for my pounding head and neck pain and quiet the burning in my belly. So after getting medicines putting something in stomach grabbing first aid kit, water bottles and making a couple of sandwiches because I did not pay attention to message about whether or not food was provided by troop.  I managed to make it back to camp without missing turns this time.

After taking me to my station and handing me everyone’s forms I thought I was going to pass out. So I decided to get a bit of fresh air and go to the restroom. The closest facility looked questionable. So I decided to walk a bit further wishing I had my cane in this uneven terrain in my off balanced state. After using facilities, I see 2 young girls walking very deliberately with a fright in their eyes. They did not seem to be stopping rather proceeding to the exit. I ask what was wrong and where they were going. They said they went into facility, which I thought questionable, and there was a big black snake (only black snake I know is Black mamba) so they ran out. But, they really need to go to the bathroom.  I pointed them to restroom I had just used but they refused to go in without me to search first. Then they wanted me to catch the snake – to which my answer was there is no way no how- the ranger was called instead to retrieve. I walk girls to main camp where there is a congregation of elementary school girls screaming and coordinator is on top of table. Of course only one not screaming and front and center of all the action is my daughter! Figures.

More screaming takes place when ranger comes out with snake. I was trying to remain calm but kept looking all around. I did not want this to be the day I have to take care of someone with a snake bite.  Of course my friend who is an expert but nor present at camp said it was probably a water snake and not to worry because this was his home! I don’t care if it is its home or that is most likely harmless.  I still don’t want it around my legs.

The rush gave me a high for nearly the duration of the camp when I finally had to go lay down in my car for the remainder of the afternoon.

Next time I am not getting off the car or even agreeing to camping- for me roughing it is staying at the holiday inn.

My daughter and I passed out from exhaustion when we got home without saying a word to each other on the way back.

I am certain this will be another story we talk about in years to come.

copy right 2017

all rights reserved by Maria De Leon

Celebrating Caregivers Month Diva style!- By Maria De Leon

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” Don’t dwell on the disease, value the moments, the pearls of wisdom, their smile and humor.”

I have been most fortunate in having my BFF act as my caregiver. Ironically, I was her husband’s parkinson’s doctor for years and still continue to look after him from the side lines. but, when i was diagnosed and forced to close my practice due to medical issues, she was the first one to assume the role of not just my friend but also that of caregiver and travel companion. She often says she retired, the same year I did, to take care of me.

I suppose its a great symbiotic relationship. I provide levity, distraction, adventure and humor as well as advice in dealing with her own husband’s Parkinson’s of 20 plus years.

In truth, as many of you know it DOES take a village to care for a chronically ill person. She eases my husbands burden and I ease her burden. Although,  as of late since her knee surgery we have become each others caregiver.

Even though we have traveled together many times, this last excursion truly was the most memorable and fun.

Since I have gotten a bit more frail, I asked her if she would like to accompany me to my last meeting for medical writers in Orlando. However, as the day approached she also became increasingly physically compromised which made me wonder if it was a good idea to travel together. The last time I had taken a companion along, I ended up being the caregiver 24/7 which not only wore me out physically but mentally and emotionally as well. In my current weakened state, I was uncertain I could handle the task of caring for someone else. This is often what happens to many care partners, especially those that are older, when they become ill not only do they suffer but also the love one who depends on them.  (this is the time to ask for intervention and help from outside source such as respite care, a home aid, consider assisted living or temporary nursing home, call on other family members or close friends).

However, when both partners are willing to work together and rely on each other strengths, the stress of care-giving can be greatly diminished and might even end up having fun as we did.  So, we set out on an adventure thinking about our needs coming up with the best plan to maximize our well being and minimize any possible injuries and stressors.

start by formulating a plan- including expectations (this is not just for traveling or long term goals but day to day activities)

We knew we both had hard time traveling so we upgraded to comfortable seating in plane, we got a scooter for her and took a walker and cane in case either one of us needed it. I took all the medicines which could help with any incidentals- which by the way came in very handy when I got sick the second day.

Her scooter was great because, I did I not have to carry any bags which usually cause spasm in my neck triggering migraines. we took time to eat so we could take our medicines on a timely manner and rested when we felt like it. It was the first time i did not feel pressured to do or go because if she was tired and needed rest I rested as well and vice versa. Yet, we were able to enjoy nice dinners a day at Epcot and I was able to attend my conference while she rested.

We decided on the best mode of transportation – i.e. whose car was more comfortable for travel and who did best driving depending on time of day and physicality. She drove while I was sedated by medications. Also we considered time of day when we are at our best to take charge of situation, I am best at night and she in the morning- ease peace to divide responsibilities just as I do with my husband in caring for our daughter and other house responsibilities. { don’t try to do it all or go at alone- unless your spouse/ patient is completely incapacitated and demented, there are things that can be split up- giving them a sense of purpose and also allowing you free time}

So in the end, with open communication, realistic goals and expectations care-giving can be a bit less stressing and accept that there may be days when plans just have to be thrown out the window due to unexpected circumstances. (we both were so tired one morning, we decided to forgo early morning event we had scheduled.)

Despite, many physical impediments we manged to have a good time- even got our picture taken with a couple of Disney characters!

 me and chip
 jan and me

@copyright2017

All rights reserved maria De Leon