I’m so exhausted. No one should have to go through what we
are going through. I literally know no one else in person that has this or any
of the other crap I have gone through. I feel the same way every single day. I
am just ready to quit. I just want rest. If it were not for Facebook, I would
not have anyone in my life that really understands.
We all need community, and we all need to feel that someone
understands. The statements above represent just some of the conversations and
comments I have seen or written online as I have connected with others around
the country and around the world that battle Parkinson’s. When I received my
diagnosis, I was the only person I knew currently battling Parkinson’s. I knew
of friends who had family members that battled it, and I knew older people from
my past who had it, but no one I knew had this disease, and certainly, no one
my age.
When I met with my specialist, I was one of 2 people, in this
practice, that was under 50 dealing with this. As I researched this a little,
I discovered that roughly 1,000,000 people in the United States battle
Parkinson’s (worldwide, only about 10 million out of 7.53 billion people on the
planet have Parkinson’s – that’s less than ½ of 1% of the population). Out of
those, anywhere from 2-5% of those cases are Young Onset Parkinson’s Patients,
meaning there is only somewhere between 20,000-50,000 cases in the USA (on
average, between 400-1,000 per state).
This is not a huge number. Even when I went to the local Young
Onset Support Group, I was the youngest one. Realizing this can feel very
lonely, and many times I wondered if anyone really understood. This was one
time I was really thankful for Facebook. As I started looking, I began to find
support groups online for not only Parkinson’s patients, but Young Onset patients.
When I found these groups, something amazing was opened up to me.
In messages and posts, I found people putting into words all
the things I was feeling. There were times when I or others would vent, and encouragement
would come flooding back. There were other times when someone would be
struggling with a symptom of this disease, and others would share how they
struggled with the same thing and what they did. There was no judgement, no
dismissal, no trite phrases thrown around, just community.
It was a community there for one another. A community that
truly understood what it felt like. People from all walks of life, all
backgrounds, all ages, all beliefs, all around the world, coming together to
support and help each other – and it was beautiful. It was the first time in my
life, that with a health struggle I was facing, I genuinely felt understood.
This is not to say others around me did not care for me and understand the
difficulties I faced, but these people really got it. They lived day in and day
out with the same struggle, and in realizing that, there was comfort.
In many ways it helped to provide hope, encouragement, strength,
comfort, laughter, and most importantly, it gave a listening ear. There is
something about talking with someone who truly gets it that gives us strength
and comfort. It was a choice that we were all making about how we would walk
through this disease, and our choice was to be there for each other, even if only
through a computer screen, and to encourage, strengthen, and sometimes, just give
someone a shoulder to cry on.
We all walk through struggles, and many of my online friends
have reminded me that I decide how I will walk through this. I can turn inward
and think only of myself, or I can reach out and help others out of my own
trials. Too often, when we walk through pain, it becomes all about us, but when
we walk through pain, we also have another choice and opportunity. We have the opportunity
to help others along the way. We can show them that they can still keep going,
and that they have people to help them.
What are you walking through right now in your life? Is it
something that you feel alone in? Somewhere, someone else is walking the same
path you are. Find them, help them, encourage them. Be the shoulder to cry on,
and cry on their shoulder. Laugh with them; encourage them. Let them know you
get it, and find someone that gets where you are. We all have the opportunity
to comfort others with the comfort we ourselves receive. We just simply must
choose to give and receive from a community that understands and is walking the
same path.
I am very thankful for the friends I have already met that
are walking this path. I hate that they are walking through this pain, but I am
thankful that I have found this “tribe” to walk with me on this new journey of
life, and I am thankful for those that have taken the time to talk with me and encourage
me out of their struggle, for they truly do understand. Out of their own pain
and struggle they have helped another, and in this, shown true love for others.
ReplyDeleteMy husband was diagnosed with early onset Parkinson's disease at 57.his symptoms were shuffling of feet,slurred speech, low volume speech, degradation of hand writing, horrible driving skills, right arm held at 45 degree angle, things were tough for me, but now he finally free from the disease with the help of total cure from ULTIMATE LIFE CLINIC, he now walks properly and all symptoms has reversed, he had trouble with balance especially at night, getting into the shower and exiting it is difficult,getting into bed is also another thing he finds impossible.we had to find a better solution for his condition which has really helped him a lot,the biggest helped we had was ultimate life clinic they walked us through the proper steps,i recommended this www.ultimatelifeclinic.com to anyone who needs there help.