I received this from a new PD friend awhile ago. It speaks for itself and you will be encouraged.
Thanks, T., for the wonderful gift. ~Sherri
A fellow person with PD asked if anyone else has felt embarrassed of their PD symptoms in public. She has noticed that she doesn't go out in public much anymore for fear of falling or shaking too much, freezing up, etc. I remember going through a time or two like this and being paralyzed by fear but by God's grace and instruction I've come to the other side. The following is my response to her and I wanted to encourage others that might be going through the same thing.
I've never had the problem of freezing but I have and still do at times shake so bad that it's like having the blue light special going off over my head. (It's an old K-Mart thing.) Anyway, it makes people stare. I did get to the point where I almost never left the house for fear of my meds turning off and I would become a slow, stiff, shaky mess and it would be a show for people.
What I've learned is I am at times a slow, stiff, shaky mess and that's okay. When people look at me or stare I will smile and say hi. Some will ask if I need something to eat and I'll smile and say “Oh no, I'm not diabetic. I have Parkinson's, but thank you”. Sometimes my meds will turn off and I'll find a place to sit and rest, take some extra meds,if needed, and often will find someone to have a conversation with.
I had to learn to accept myself just as I am at any moment if I wanted people to accept me. These symptoms that scared me also scare others because they don't know what to do. I had to be the one to say inside and out, “I'm okay, don't be afraid – it's just a moment and I need to rest.” We are what we are and that doesn't make us any less of a person for society.
I've met and had some wonderful conversations with complete strangers because of situations like these. I've come to realize that sometimes it's not always about me and the symptoms but someone needed someone to come along and sit and talk with them. Fear and love are very strong emotions, one kills the soul and the other frees it. It's our choice to choose the right one.
You are a valuable person no matter what your body does and some will accept that and some won't but as long as you do – that's what matters. Until then, I accept you . Freezing, shaking, slow and all, I accept you and I'm thankful for you because you add something special to life that no one else does… YOU!
As the journey with Parkinson's continues, often the use of prescription medications and treatments grows. While these treatments are necessary to help maintain quality of life, there can sometimes be dangers and side effects that make one ponder if taking the prescription is worth it at all. At times, drug and medical device recalls can happen completely unbeknownst to the patient.
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when i am older
and parkinson's wants the best of me,
remember that i loved German chocolate cake
make one and feed it to me.
when i am older
and parkinson's begins to try and take the best of me,
remember that i loved the music of steven curtis chapman
and play it loud for me.
when i am older,
and parkinson's seems to be getting the best of me,
remember how i loved flowers
and pick a bunch for me.
when i am older,
and parkinson's continues to fight to get the best of me,
remember how i loved the songs that the birds would sing
and sit me on the porch, so i may hear them sing a song to me.
when i am weaker
and parkinson's seems to be getting the 'all that's left of me',
remember how i used to love to take walks,
and shove me in a wheelchair and take a walk with me.
when i am older
and parkinson's seems to be winning the battle against me
don't stop fighting the hard fight for a cure
for all – not just for me.
when i am weaker
and parkinson's has taken my words from me
remember how much i loved you
and i'll be in a much better place soon
so be happy – for me.
There has been concern regarding the “made-up” stories of someone having Parkinson's disease. What I mean is this – I have heard that some people with PD have been told by their spouse, a friend or family, or another caregiver that their “faking it” or “it's all in your head” (no pun intended). Some have even gone to the doctor, only to have the doctor (not a specialist in PD) tell them (the patient) that they're just going through a phase of depression and eventually, they'll get over it.
You don't get over Parkinson's disease.
Let me begin by telling you a tidbit of my story.
Around the age of 30, I started experiencing some strange things. I was getting extremely tired. Not so strange, I know. I did have three small children. But, among other things, my eye began burning and I kept seeing bright reds and yellows. I suppose you could say that was the symptom that got me to the doctor. The eye doctor.
Before my eye exam, I explained what was going on to the optometrist – that my eye would painfully burn and that I was seeing 'fireball' type objects. I likened them to the fireballs in the Mario Brothers Nintendo games my kids would play. During the middle of my eye exam, my eye doctor slid over to the light switch on his little black stool and flipped the lights on. Something he had never done before.
“Has anyone in your family ever had MS?”
My heart sank. I knew what MS stood for and it wasn't milkshake. I vaguely knew what MS was and I knew it wasn't good. I answered. “No.”
At my response, he excused himself and walked down the hall and brought the ophthalmologist back with him. Off went the lights and the ophthalmologist examined my eye. The lights came back on again.
“Your optic nerve is hemorrhaging. What you're seeing is blood hemorrhaging through the nerve and that is what is causing the burning sensation.”
According to the two doctors standing there, Multiple Sclerosis, Rheumatoid Arthritis, and Lupus can often begin with what was happening inside my eye. However, there was one other thing it could have possibly been and they immediately had me come back in the morning to have an MRI of my brain done, to make sure it wasn't a brain tumor pushing on my optic nerve. An MRI would also show if there was any build up of myelin on my brain – another symptom of MS. The MRI came back negative for a brain tumor but showed some very slight myelin build up – a symptom of MS if the build-up had been greater.
Eventually, they called it Lupus and treated me accordingly for it. Ten years later, I was diagnosed with Young Onset Parkinson's disease. The symptoms have been consistent with all I've read about Parkinson's disease. My neurologist and I both agree that they misdiagnosed the PD for Lupus and this time around, the YOPD was the correct diagnosis.
The point of me sharing 'my' story with you is to show that often times certain diseases may ravage our bodies and never be seen with the naked eye. No one else could see my eye hemorrhaging and what was causing the awful burning I could feel (and see). But it was real.
Now, for the last 10-20 years, I have PD, as do so many others who thought they were signing up for one thing in this thing called L-I-F-E, only to find out they were given another. A life of leisure possibly gone wrong. At least gone in an unexpected direction.
What does Parkinson's disease look like? That all depends. First of all, it is different for everyone who has it. Some may shake uncontrollably all the time, while others shake less but have terrible back and/or shoulder and neck pain. Some can smell the slightest fragrance, while others bemoan the fact that their sense of smell has disappeared completely. Some sing to strengthen their faltering voice, while others can still yell up a storm. Some have a difficult time with walking – others run marathons.
However, most people don’t and most likely won’t ‘see’ these things: You won’t see the restless legs that keep a person with PD awake half the night, pacing the floor to get it to stop. You may miss seeing when the fall, due to being off balance, scratching up their forearms and elbows. You won’t see them struggle while getting dressed because they can't move their fingers. You won't see the pain they live with day in and day out or the muscles in their body that seize up and cause their toes to curl under or cramps throughout their body as if their muscles are twisting together like they were a wet dish cloth being rung out. You won't see them struggle to take their pills because their throat muscles are quitting to work properly.
The fact is, you won’t see a lot symptoms common for PD or MS or Lupus, etc., even if they are visible, because you may not really understand the disease or know what to look for. But, the PD patient is fully aware of what is going on inside of them and no one believes them because they can’t see it and think they’re pretending that they have the disease because they want attention.
May I ask a favor of those who find it hard to believe that person you think is just acting? Don’t dispute what they are trying to tell you or what they are dealing with. To lose the support of a spouse who thinks you’re merely putting on an act can be devastating to the one suffering. If you’re in denial over what your spouse has been diagnosed with, seek out a support group for caregivers.
Whatever you do, don’t push their diagnosis away and pretend nothing’s wrong. Believe them or they’ll seek support somewhere else. Is that really what you want? To belittle their pain, their struggle, their loss of dreams will push them away. And, ask yourself, why would anyone want to pretend to have such a disease?
And PD person, if you’ve got a doctor that doesn’t believe what you’re telling him, it's time to get a new doctor.