Communicating in Quarantine

Communication for people with Parkinson’s can have its challenges.  Hearing loss, masked expressions and soft voices can make things difficult. Our recent rules of 6-foot social distancing and wearing masks only compound the problem. At a recent venture to the grocery store, I realized how difficult it was to communicate in my usual way.  I no longer knew what someone meant when they stopped and nodded to me.  I couldn’t see their whole face.  Were they pausing to let me go in front of them?  Were they warning me not to get too close?  Were they smiling or grimacing? Likewise, others couldn’t see my facial expressions.   Here are some things to keep in mind and maybe help you communicate more easily.

Did you know that 70% of communication is non-verbal?  This includes body movement and orientation, hand gestures, vocal intonation, eye contact and facial expressions.  All of this is more difficult to interpret from a distance and from behind a mask. Now is a great time to bump up your verbal skills by working on speaking louder and with intent.  Singing and vocal exercises help a lot. Don’t let the stay at home order deter you. There are online programs to help you out.  Try joining a group like the Tremble Clefs or the Parkinson’s Voice Project.

Keep in mind, if people had trouble hearing you before, they will have even more trouble when your voice is muffled behind a mask.    You are likely to have more difficulty hearing them also. Don’t hesitate to ask someone to repeat themselves.  They may not realize how muffled their voice is behind the mask.  They won’t mind repeating themselves especially if you ask nicely.

Wait to talk until there are no distractions.  If the pharmacy clerk has his back turned or is there is an announcement going on overhead, it will be harder for them to hear you and for you to hear their answer. This is good practice at home also.  Instead of calling to your spouse from the other room, walk in and get their attention before speaking.   Be cognizant of background noises that may interfere like the dishwasher running or the T.V. being on.

Many of us are communicating over the computer these days using programs like Zoom, Google Groups, or Microsoft Teams.    There are a few things you can do to make communicating easier on both ends of the conversation.

If possible, use your computer as opposed to an iPad or phone.  The screen will be bigger and it will be easier to see the speaker.  We all do a bit of lip reading even if our hearing is perfect.  To make it easier for others to see your face, make sure you are sitting with good light on your face.  Also, if you’re athe lipstick wearing type, put some lipstick on.  The contrast of your lips makes it easier for others to read your lips.

Using a headset that has a microphone or Airpods, will make your voice louder and clearer to those listening.  This is especially helpful if you have a soft voice.

If you wear hearing aids, find out if they have a blue tooth feature.  Using this feature can take the speaker’s voice right to you hearing aids.

Although not everyone with Parkinson’s, is a senior, the majority are. One third of people over age 65 have some hearing loss and this prevalence is even higher in seniors with PD.  It is a good practice to see an audiologist annually to get a hearing test and since so much of our communication is visual, it is a good idea to have an annual eye exam and make sure your prescription is up to date.

Happy communicating and may we all be able to see each other’s smiles in person soon!

 

Handling the Holidays

Oh, the weather outside is frightful…or maybe it’s not so frightful if you’re living in beautiful southern California.  The weather typically isn’t one of our worries this time of year, but this time of year can certainly bring its challenges for anyone, especially someone living with PD.  I don’t know if you’re like me, but I do best when I follow a strict routine.  Wake up early, take meds at designated times, eat food that is not only nutritious but is timed around taking those meds, go to exercise classes regularly, hang out with people that understand my limitations and aren’t offended when I need some down time, making sure I have that down time daily so my stress levels stay low.  Where in this routine am I going to fit family gatherings, holiday parties, shopping and more shopping, sending cards, decorating the house, and don’t forget baking dozens of cookies for the neighbors?

Here’s a few tips to help you through the holidays with PD.

  1. Set an alarm for your medications. This is a good practice at any time, but more so when things are hectic. Routines can get sidetracked easily with so much going on and timing your meds is crucial. Many of us with PD live by the clock.  Set an alarm on your phone so that no matter where you are or what is going on, you will remember to take medications.
  2. Keep up your exercise. Some of us like to exercise and some of us dread it, but for most of us, exercise helps us feel better, diminishes some of our symptoms and lifts our spirits. It can be hard to get to class over the holidays when family is visiting but consider inviting a visiting family member to go to class with you. If you are visiting another town, see if your hotel has a gym or if there is a local Rock Steady Boxing or other exercise program to visit. Some hotels offer yoga classes. A yoga class can not only help your body feel better but is great at reducing holiday stress.
  3. Be prepared for dietary temptations and changes. The holidays tend to be full of goodies that are not so good for us.  Be selective with your treats.  Instead of depriving yourself of everything, choose a small dessert here and there so you can enjoy yourself and still not throw your system off.   And don’t forget to time that protein around your medication schedule.  This can be difficult when mealtimes are different from normal so think in advance about when you will be eating.  Fortunately, most holiday dinners are full of wonderful veggies so load up!
  4. Avoid the stress of holiday crowds by online shopping. Malls this time of year are busy and noisy and multitasking can be challenging. By shopping online, you avoid having to find parking places, standing in lines, and battling your way through a mob of people vying for the latest popular item.  If you are an Amazon shopper, try using smile.amazon.com and a percentage of your purchase will go to charity.
  5. There is a lot going on during the holidays. Prioritize the activities that will bring you the most joy and stick to those. Don’t be afraid to say no to the rest.

Not 20 Anymore

Three years ago today I heard those words, “You have Parkinson’s Disease.”  If you had told me then that in three years I would be healthier, stronger, and more confident, I would not have believed you.  That day, I believed it was all going to be downhill from there.  There have definitely been some challenges but everyone has challenges and I have to remember that sometimes, life’s challenges are just a normal part of life and getting older.  After all, I’m not 20 anymore.

PD or Normal Life?

If you have been diagnosed with something serious like PD, you may tend to blame everything on your disease.  I know that I do this on a regular basis.

My stiff and achy joints must be a result of PD and not the fact that I just spent hours at the gym working really hard… and I’m not 20 anymore.

My need to grab glasses to read on a regular basis must be PD affecting my eyes and not the fact that all my friends without PD are doing the same thing…and I’m not 20 anymore.

My croaky voice must be my dopamine stores depleting and not the fact that I just spent the last hour or so coaching a Rock Steady class  trying to make my voice heard above the music and other shenanigans.

My forgetting why I walked into the kitchen must be Parkinson’s cognitive decline rearing its ugly head and not the fact that I’m not 20 anymore…or 30…or 40… or even 50.

I notice when my non-PD friends and family have these same issues and I have to remember, this is just part of life and not necessarily PD.  I can remember this better when I  am well rested. This year, I have learned the importance of rest.  I work really hard at staying healthy. Life can fill up fast with hours at the gym, multiple doctor’s appointments, studying the latest research, trying to eat healthy.  When I go at full speed and don’t take down time, I feel it in my body, mind and soul.  I hear the whisper of PD telling me that it is still there and it has me and I better not get too confident because if I do, it will blindside me at its first opportunity.  When I am well rested, I can face the real PD challenges easier.  They are not as daunting.  And that makes life easier.

Now, I think I’ll go put my feet up and maybe take a nap…oh no, is my PD making me tired or is it that I’m not 20 anymore?

Google and Gadgets

It seems someone is always trying to sell you something online and the Big Brother of the Internet has your demographics down to a science. I am one of those people who never gives truthful personal information online in an effort to not let Big Brother know me too well.  I told Facebook that I am a 114 year old man and yet, I get bombarded with ads for hot flash treatments and hormone supplements. How do THEY know? You only need to put one word in a google search and you will get ads for days and days related to that one topic.   These days, numerous ads for products, supplements, treatments and devices related to Parkinson’s shower my social media. I know this is because of my daily searches for something, anything, new that might help me and others with Parkinson’s.  As much as I try not to pay attention to these ads,  I’m as human and as desperate as the next person and it is hard not to hope something will work.   Once in a while, I will try out something if it is recommended by someone I know or I see that multiple people have recommended it.  I do this with a healthy dose of skepticism and an awareness of the company’s return policy.

The first thing I bought online after reading a review from a fellow Parkinson’s blogger was a weighted blanket. (Big shout out to Twitchy Woman for the recommendation).  I have personal experience seeing the benefit of these with Autistic children.  I LOVE my weighted blanket. I don’t claim to know why it works, whether it just be the added physical weight on me or if that sensation actually does something to the nervous system but I know I feel better when I use it and my tremors are reduced.  On the downside, it is heavy.  If you have trouble turning in bed or getting out of bed, it might not be the thing for you.  It is also hot.  I have tucked it away for the summer and I miss it but the heat is just too much for me. I have actually considered using the blanket  on the side of my body affected by PD and hanging the other half out from under the covers, balancing out the hot and cold, but the gymnastics involved in keeping this balance and wanting to roll over in bed at 3 a.m. made me rethink this.
I heard there is a “cooling” weighted blanket but am waiting for  more information before I jump on that one.  It doesn’t seem possible that something so heavy could be cooling but I have been wrong before. More recently, I tried a vibrating metronome worn on the wrist called the Soundbrenner Pulse that I saw some Rock Steady coaches discussing.  The device was designed for musicians, not people with neurological issues. This one peaked my interest because I have seen people move better when they have a rhythm to move to.  I often play music with a good beat when I need to cook dinner.  Having a rhythm makes my movements smoother.  My hope was that the vibrations would lessen my tremor.  Although it seemed like my tremor was less sometimes when using it, it didn’t help at other times.  After many trials, my results were inconsistent.
 I did like wearing it when out for a walk but as of right now, I don’t really need it for walking so I returned it.  I think there is a definite potential with this to help someone with gait issues and I know of a music therapist that uses vibrating metronomes for gait training, speech and singing. If you try this,  I highly recommend training with a music therapist or physical therapist to figure out how this might help you.

My latest purchase was Touch Points which are vibrating devices that are supposed to stimulate the Vagus nerve and calm the nervous system. You can wear them on the wrists or other places on the body. Unlike the Soundbrenner Pulse, you have to wear two of them.  I was more than a bit skeptical but the company offers a thirty day return policy so I figured why not?  My first few times trying them were disappointing.  I really thought I would be returning them.  Not wanting to give up on them too soon, I kept using them everyday for about 20 minutes at a time.  I used them later in the afternoon when my meds don’t work as well and my anxiety peaks.  After a while, I forgot I had them on and would realize later that my anxiety was less and my tremors were reduced. I haven’t worn them in public yet and even at home, my husband sometimes thinks my phone is buzzing when it is my Touch Points.  The scientist in me can’t dismiss the fact that there may be some placebo effect in there but even if there is, they make me feel better and  help me until my next dose of meds kick in.  I’m not at the thirty day mark yet but am likely to keep these.

I am not a doctor, just a person living with Parkinson’s,  that disease of the incredibly complex and sometimes completely mysterious brain.  I believe there is knowledge to be gained in exploring alternative options and I think that we should share that knowledge.  I am not recommending trying things with the potential to harm you or trying things that you can’t return if they don’t work for you.  I am recommending that if you try something, share the info on how it works with others.  We are all in this together and we are better when we fight together.

Seize the Minute

Although I never wanted Parkinson’s, I am thankful for some of the things it has taught me.

I have learned to enjoy everyday, mundane activities.  Those things in everyone’s day that they don’t think about, often stand out to me.    I am able to rise easily  from a chair,  do laundry and cook dinner.  I can drive to the grocery store when needed.  Although household chores are not fun, I find joy in the fact that I can do them.  I know all too well now that not everyone can do these things.

I have learned to take advantage of the times when I feel my best.  Parkinson’s can be so unpredictable throughout the day that there are times when simple tasks become hard.  You might find me chopping vegetables for dinner in the middle of the morning because I am feeling good in the morning and never know what the afternoon will bring.  (It often brings tremors and fatigue).  If it ends up being a good afternoon, then dinner is already prepped and  I have extra time to enjoy something else.

I am learning to be a planner. I  set early deadlines for myself.  This can be puzzling to others…”why are you working on that now?  You’ve got three weeks to get it done.”  I don’t know how I am going to feel in three weeks, or even one week or even in one hour so if I can, I seize the moment and try to squeeze in as much as I can while the going is good.

I have learned to be more patient with myself.  When the off times hit and I can’t type as fast as I want or get up the energy to clean the house, I allow myself the time to rest (something I have never been good at). I try not to feel guilty when someone else picks up the slack (usually this falls to my wonderful hubby).  I try to wait patiently for my meds to kick in and for some sense of normalcy to return so that I can get back to life.

I have learned that I am strong. Adversity can knock you down and it can make you stronger.  PD is a big adversity.  It does knock me down sometimes but I get back up.  Although I know that my future is likely full of knock downs, I pray that it is also full of getting back up.

Parkinson’s Awareness Month

Currently, approximately 6 million people are living with Parkinson’s disease (PD).  This is up from 2.5 million in 1990.  Scientists think that this number will increase to 12 million in the coming generation.  Although, treatments and medications are getting better, it looks like we are still quite a ways away from a cure.  So what can you do about it? It is a giant problem.  Is there some way you can help?  Whether you have PD or not, there are things you can do to improve the lives of those living now with PD.

If you are living with Parkinson’s:

Fight back.  When that magic treatment or cure does come along, you need to be as healthy as possible so do what you need to do to fight your PD.  Exercise, take your meds if needed, eat right, stay educated and involved.

Volunteer for clinical trials.  Clinical trials vary. Some require  a lot of effort.   Some don’t take much effort at all and can be fun and educational. Some can be interviews on the phone or online.  Many require you to visit a local medical center.  Some even pay you for your time. Someday, someone will be part of the trial that results in a cure. Will it be you?  Unfortunately, without volunteers, not much will get done.  You can look for trials on the Fox Trial Finder or at ClinicalTrials.gov.  Check with your neurologist also.  They often know about the local clinical trials and can advise you whether you might be an appropriate candidate or not.

Educate others.  I don’t know about you but when I tell people that I have PD, I want understanding, not pity.  To gain understanding, people need to learn about it.   I was surprised to find out  that many, maybe even most, people don’t know much about Parkinson’s or they are mistaken in what they think it is.  Encourage others to ask questions and take the time to answer them.  I often hear people say they have a relative with PD but knew nothing about it.  You may be the pebble in the pond that causes ripples far and wide.

If you do not have Parkinson’s:

Educate yourself.  As stated above, people with PD want, and should receive, understanding, not pity.  There are plenty of good websites out there to help answer your questions.  Try the Michael J. Fox Foundation, The Davis Phinney Foundation, or the Parkinson and Movement Disorder Alliance.  I have found all these organizations to be accurate in their reporting and proactive in their efforts to defeat PD and help those living with PD.

Volunteer.  Volunteering is good for the soul…and much more.  When I take the time to help others, it helps me.  I get all warm and fuzzy inside (ok, maybe that’s tremors sometimes but you get the picture).  Do you enjoy exercise? Volunteer at a local Rock Steady Boxing or other fitness program for PD.  You don’t have to make a huge time commitment. Do what you can.  Are you able to drive and have a little bit of time?  Many people with Parkinson’s have given up driving and are stuck at home.  You could drive them to a support group once a month, help them grocery shop or just go out for coffee.  Loneliness is a key factor in determining the progress of Parkinson’s.  By spending a little time with someone, you could actually help them feel better and cope better. Caregivers can also use a break so maybe you could fill in so they can have a few hours to themselves.  Have only a few hours a year?  Volunteer at one of the PD events in your area such as a walk or other fundraiser.  They are always thankful for help. Have some professional or personal experience with PD?   So many organizations need your help.  Consider serving on a board or maybe even organizing or running a group.

Donate.  Unfortunately, it is a reality of life that not much in the research world gets done without money.  PD is also an expensive disease to have.  People often go without much needed therapies and treatments because they can’t afford them.  One of my favorite organizations is the Parkinson’s Wellness Fund which helps people with Parkinson’s afford out of pocket expenses related to their PD.  There are many other organizations also.  Don’t forget to do your homework and check out any charity before donating.  You can check out many of them at Charity Navigator.

Stay healthy.  The statistics are bleak for the prevalence of PD in the future.  You never know when or who it will strike.  I never expected it to hit me.  Thankfully, so far, I am in good enough health to hit back. You can better your odds of staying healthy by protecting your brain from the inside and out.  Get your exercise, eat a healthy diet, avoid pesticide and other toxin exposure and take precautions to avoid head injury.  If that means wearing a less than stylish bike helmet next time you go for a ride, so be it.

I pray that this is the last Parkinson’s Awareness Month we ever need to have.  I pray every day that the cure is right around the corner and that future generations never have to deal with PD.  If that cure doesn’t happen this year, I’ll be spouting off again next year at this time. Until then, it’s Parkinson’s Awareness Month 2019.  What are you going to do?

 

PD Buzz

Every town has its own vibe, its own groove, its own”buzz” so to speak.  I am fortunate enough to live in Orange County, California where not only are the beaches outstanding, but it has so much going on.  It is definitely an area rich with resources for its residents.

Among these resources, are lots of activities for people with Parkinson’s Disease.  When I was diagnosed with PD, I was not made aware of all that was available locally to help me.   I’m now 2 1/2 years post diagnosis and see the same thing happening to others recently diagnosed.  What a waste to have all this good stuff and not know about it!

Well, we PD warriors are a hearty breed and when we see a problem, we like to fix it.  A small group of us got together and the result of our collaboration is PDBuzz.com.  Our goal is to have one site that lists all the PD resources available in the county: support groups, exercise classes, rehab services like PT and speech, conferences and more.   We have experienced the benefits of being plugged into the PD community and want everyone else to have the same opportunity.  PD can be a tough journey  and no one should have to go it alone.

We are still getting the word out  about PDBuzz.com  to doctors and other organizations but so far, the response has been outstanding.  Doctors in the area have expressed that they don’t have the time with their patients to inform them of all that is available.  Organizations giving educational conferences want you to attend.  They want to get the word out to the people with PD, their families and their caregivers.  We even heard from someone out of town that will be coming to visit for an extended stay and  was excited to know what is available here.  What an unexpected delightful result of our work!

If you live in the OC area,  check out the site. Consider taking advantage of some of the activities and please let us know if there is anything PD related in OC that we are missing.  If you are from somewhere else, I encourage you to seek out resources in your area.  You are not alone and we are better together!

We are people with Parkinson’s helping people with Parkinson’s.

Oh Parkinson’s

December 10, 2018

My mind goes a little crazy when I can’t sleep.  I bet many of you can come up with more verses.  Leave a comment and let me know what you’ve got!

Oh Parkinson’s

(Sung to the tune of Oh Christmas Tree)

Oh Parkinson’s, Oh Parkinson’s

You must have got it wrong

Oh Parkinson’s, Oh Parkinson’s.      

I’m not weak, I’m strong.

My steps might freeze, my hands might shake

It’s 3 am, I’m still awake

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long. 

Chorus 

When I wake up, I’m slow and stiff

Can’t smell my food, no not a whiff

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long.

Chorus

I cannot sleep all through the night

Those dreams they give me

Such a fright.

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long.

Chorus

You want my voice, you want my smile

If I give an inch,

You’ll take a mile.

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long.

Chorus

 First it’s my hip and then my knee,

You think you’ve got the best of me

But Parkinson’s, oh Parkinson’s

I’ll fight you all day long. 

Chorus

You make me twist, you make me jerk

I can’t predict when meds will work

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long.

Chorus

You must think you’ve beat me down

But I’m the toughest one in town.

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long!

 

christmas-tree

Gratitude

November 24, 2018

The Thanksgiving holiday has come and gone.  I started it in the kitchen fairly early in the day.  My first thought was, “How come everyone in the house is sleeping and I am chopping vegetables?”  Quickly, my second thought became, “I am so fortunate that I can chop vegetables.”  This season has brought a host of tragedy with it.  In California, there are many who have recently lost family members and  homes in the wildfires and there are many families that lost loved ones in the recent Thousand Oaks shooting.  I am blessed that I have a kitchen and  that my home  will be filled with family and friends this season.

After contemplating my many, many blessings, I decided that my upcoming Christmas season will be filled with giving and not getting.  When I look back over the years, we certainly gave to charities but I never made it a focus  in our home.  I didn’t get my kids involved in it like I wish I had.  If I had to do it over, I would find a handful of charities that meant something personal to my family.  I would research them with my kids and have them decide how we wanted to be involved.  Would we  donate money or actually donate our time and talents (or do all three)?    I think kids learn by doing and seeing.

This year, I have personally seen what some non-profits do for people.  I have been the beneficiary of resources from institutions like the Davis Phinney Foundation and the Parkinson and Movement Disorder Alliance.  I have attended their conferences and ordered their materials (at no cost to me).  I am praying that in the future, I reap the benefits of a cure found by the Michael J. Fox Foundation (please let it be soon!)  They could not do what they do without the generosity of others.  Recently, I  learned about the Parkinson’s Wellness Fund (PWF).  Parkinson’s is an expensive disease to treat.  Fortunately, I can afford many of the available treatments although I know many that cannot.  The PWF helps provide out of pocket expenses to those who can’t afford it.  Even better, the PWF has agreed that any donations designated for Orange County, will be spent in Orange County. This is personal to me.  It will be nice to see those funds being used locally.

I hope the upcoming season brings you all health and happiness.  Please consider being a giver and not a getter this season.  Find something that causes your heart to melt and get involved in it.  And don’t forget the littles in your family.  You may start a tradition that has benefits for years to come.

Looking Through the Raindrops

November 4, 2018

I spend lots of time reading about Parkinson’s treatments.  After all, my quality of life depends on it. It’s like looking through a rain streaked window.  Everything is blurry, but once in a while, you catch a glimpse of something clear and you get hopeful that the sun will break through and make everything clear.  Then more rain falls, and that glimpse disappears and we wait for another peak of clarity and get our hopes up again.

In my head, I hold on to the clear pieces that I have seen and try to fit them all together.  In my head, the researchers have squeegees and are trying to fend off the downpour of toxins, bad genes, head injuries and  whatever else they think might be causing PD. (Aren’t you glad you don’t live in my head?  It can get pretty weird in there!)

As the population ages,  more and more people are being diagnosed with PD and the storm is growing. We need bigger squeegees or more window washers and they both require more money.  Either way, it’s going to take the cooperation of many to see the whole picture.

To my fellow Parkinsons warriors, keep looking out the window and hold on to each glimpse of clarity that you see through the raindrops.  I’ll be praying for a rainbow.