How To Have A Happy Holiday Season
With Parkinson's Disease
The
holidays can be stressful. Single and/or childless people will often be asked, "when am I getting grandchildren?"
You may be forced to sit next to a Trump supporter (hopefully not). Some of you
will be subject to a, “surprise guest” you would have liked to avoid and vegans
will be forced to defend their lifestyle throughout several meals!
During
the holidays, we sometimes see people that we have not seen for some for quite
some time. For my wife Kate, I will own the statement by typing, "during the holidays, I will see people
that I have not seen for quite some time.” Unfortunately, you may find out
at a holiday gathering that a friend or family member has been diagnosed with
Parkinson's Disease. If you are the person with Parkinson's disease, you may be
seeing someone for the first time since you were diagnosed. Below you will find
some tips on how to deal with these interactions.
Luckily,
I have a pretty good sense of humor about my condition, but not everyone does. In addition, all of my family and friends are pretty
understanding and therefore, this guide is not really for them or myself. I put
together this guide in hopes that some people may find it helpful. Hopefully,
you will not find this to be too annoying, but I make no promises (and to be honest, I
really do not care).
For friends and loved ones:
- Take your cues from the person with Parkinson's Disease. If they raise it, then discuss and if not, consider letting it go.
- Discussions about the latest possible cures and treatments of Parkinson's Disease should be one-on-one conversations.
- Try to avoid the phrase, "I know how you feel…" In addition, keep in mind that you probably will not make the person feel better by telling them about someone who is worse off than they are.
- Parkinson's Disease and Alzheimer’s are 2 completely different conditions. Try not to confuse the two.
- Anxiety, depression and fatigue are actually symptoms of Parkinson's Disease. While getting diagnosed with PD may be depressing and cause anxiety, these symptoms are generally present before the person is diagnosed.
- Help the person avoid anxiety by telling them about possible stressful situations in advance. For example, if you are inviting that cousin that no one speaks to anymore, make sure they know about it before you seat them next to the person with Parkinson's Disease! Come to think of it, that is probably good advice for just about everyone!
- Keep in mind that a person's condition can change from day-to-day or even from hour-to-hour. People with Parkinson's Disease often have difficulty during off periods (the time between doses of medication).
- Fatigue is a real thing. During a holiday gathering, if a person with Parkinson's Disease opts out of an activity, just let it go. Do not stop the activity or ask them why they do not want to participate.
- Never use Parkinson's Disease to fill a lull in the conversation, especially at dinner. Think about it, if you were a person with Parkinson's disease, would you want everyone looking at you while you try to eat? As a vegan, I am used to this. Vegans endure endless questions about what they will or will not eat and why at the dinner table.
- Do not correct children who stare or ask awkward questions. This may result in the child avoiding the person with Parkinson's Disease. We know that they are kids, we understand.
- Related to the above piece of advice, do not call everyone who is attending the gathering and warn them that a person with Parkinson's Disease may be attending. This will probably only cause people to avoid them.
- Try not to say, "you look like you're getting better…" As of yet, there is no cure, so the person is not getting better. If you feel inclined to say anything, be specific like, "I see that you're not shaking as much, how are you feeling?" Again, these should be one-on-one conversations.
- Try to avoid gifts related to Parkinson's Disease unless the person specifically asks for them. If you must, give these gifts privately. A set of weighted silverware can be a lovely gift, but not if the person is not expecting it and especially not if they are going to open the gift front of a lot of people. My brother gave me a set a few years back and they are great. Keep in mind, that these soup spoons are only good in a larger circumference bowls. Used in a smaller bowl, they will flip out and splatter everyone with soup!
- Please do not tell the person with Parkinson's Disease about "Rocksteady Boxing", we know about it and receive endless phone calls and email messages whenever it is on TV, so give it a break.
- People with Parkinson's disease, often use the mantra, "do not trade today for tomorrow." We live in the moment. Will you join us?
- If you happen to make one of the above mistakes, simply say, "sorry, I am just trying to show that I care…"
- Remember, we are all just doing the best we can and that includes you.
If you are the person that has Parkinson's Disease:
- Try to get plenty of rest.
- Use your cell phone, Fitbit or smartwatch to set alarms to remind yourself to take your medication.
- Try and remember to exercise.
- Take advantage of the "early boarding for those who need extra time…" announcements when at the airport. Think about it, this will mean you will not hold the rest of the plane during boarding. In short, do not just do it for yourself, do it for the other passengers. If the person at the front gate questions you, then just whisper, "I have Parkinson's Disease," (or write it on a note card in advance) trust me, no more explanation will be necessary.
- Stay hydrated, but keep in mind how long it will be before you can use the bathroom next. If you have bladder issues caused by Parkinson's Disease, you may not wish to stop every 15 minutes on a trip.
- Give love ones permission to do something without you. Tell someone in advance so that they can support you with this. Try getting involved a little, but know your limits. For example, you may agree to visit your Aunt, but avoid the annual family caroling trip!
- Take a deep breath and be patient with yourself and others. People mean well, so you may have to endure the story about Rocksteady boxing for the hundredth time!
- Remember, we are all just doing the best that we can and that includes you.
On
a side note, sometimes people think that people with Parkinson's Disease can do
anything, even things that they could not do prior to their diagnosis. I have
been invited to be part of a choir (clearly, they never heard me sing). They
also have dancing, art and other activities for Parkinson's Disease. For many
of us, however, it is like that old joke, "Dr.,
after this operation, will I be able to play the piano…" On Rocksteady
Boxing, I tried it and it was a great exercise class, even for people without
Parkinson's Disease. I stopped doing it, however, because while we may
romanticize boxing, in the end, it is just a lot of sweaty people in a gym
without air conditioning.
Happy
Holidays!
