10 Signs You MIGHT Have Parkinson’s Disease

imageYou look like you have PD. You act like you have PD. You talk like you have PD. You feel like you have PD. You sound like you have PD. You smell like you have PD (It’s true!).

Point: All of the above may seem true, but it won’t necessarily mean you have Parkinson’s disease. Because this disease can mimic so many other neurological diseases, including Lyme disease, Multiple Sclerosis, and Lupus (to name just a few), it is extremely important to get an accurate diagnosis, and that could take years and several opinions of highly qualified doctors.

However, there are markers that are quite prevalent to Parkinson’s disease that should send you seeking a definitive diagnosis, no matter how long it takes.

Here are ten signs that you might have Parkinson’s disease, which exclude the biggie – tremors (because everyone usually associates that one with PD automatically).

  1. Loss of smell.  You notice flowers no longer have a fragrance. Ben-Gay doesn’t knock you out. You can’t smell dinner. If your nose isn’t constantly plugged up, it could be a sign of Parkinson’s disease.
  2. Loss of facial expression.  imagePeople ask why you look so sad. People ask why you look so unhappy. Although Parkinson’s disease can alter our moods and cause mild to severe depression, what they are seeing is the affects that PD has on facial muscles. Doesn’t that make you oh, so happy?
  3. Gait.  You trip often. Perhaps even fall. You notice one of your feet won’t keep up with the other and drags somewhat. You may have a shuffling effect like that of a penguin when you walk. No, you are not part bird. You might have PD.
  4. Soft voice.  People tell you to speak up. People are always saying “What?” when you speak, as if they aren’t even listening. They tell you to not speak so softly. You may not be able to help it if it’s Parkinson’s.
  5. Dystonia.  Do your toes tend to curl under in pain? Your muscles seize up and hurt like the dickens? You might be able to blame the disease.
  6. Handwriting.  Did you once get praised for your handwriting? How lovely, legible and readable it was and now it’s barely more than scribble? Could be…
  7. Stiffness/Rigidity.  Is your neck often stiff? An ache in the shoulders/neck area/back? Hmmm…
  8. Balance.  Some people have actually been stopped by authorities who have thought they are dealing with someone who is intoxicated because of the way they are walking. Nope. Just Parkinson’s, but it might make you want to drink.
  9. Non-Swinging Arm.  Someone asks you why only one of your arms swings while you walk. MICHAEL J FOXSomeone asked Michael J. Fox that same question while he was jogging. His wife. That sent him to the doctor, which for him, was the beginning of a new journey…
  10. Doctor’s opinion.  
    Dr. Santiago, Boo's Black Doggy, and me after  first programming of DBS stimulator.
    Dr. Santiago (a great MDS), Boo’s Black Doggy, and me after my first programming of DBS stimulator. Muhammad Ali Parkinson’s Center, Pheonix, Arizona.
    What?!? Yes, a doctor’s opinion may be a sign you have PD and I say MIGHT because doctors are not gods and they make mistakes and get it wrong. With Parkinson’s disease, it is not uncommon to be misdiagnosed the first, second, even third go around. As said earlier, it mimics so many other diseases that it can be difficult for some neurologists to diagnose accurately, which is why a doctor’s opinion MIGHT be a sign that you have PD and, in the same respect, that you DON’T have PD.

If you are concerned you may have PD because you’re showing any of the signs above, the best point of action is to make an appointment with a good neurologist – one that has experience with Parkinson’s disease or, better yet, a Movement Disorder Specialist (a neurologist who specializes in movement disorders specifically). And if you don’t like the first diagnosis, get another one. If they differ, get another one. Don’t stop until you are satisfied that you have the correct diagnosis and peace of mind over what you are dealing with. It might not be the greatest news you’ve ever gotten, but at least you’ll know what you’re up against and what you’ll need for your new journey.

For Those Who Hurt

An Interpretation of Psalm 28 for those who are hurting

MICHAEL J FOXYou have Parkinson’s disease. Or maybe it’s cancer. MS. Crone’s disease. Depression. Or, maybe an addiction. Perhaps a habit you want to break but can’t seem to do it. The Lord is your light, guiding you on this journey of life, whatever your struggle.

If the Lord is your light, what is it that you fear? If the Lord is the stronghold in your life, what is it that you afraid of?

When thoughts of giving up or giving in come upon you in an effort to eat away at our peace and confidence in Him, they will be thwarted. When we are attacked from every side and those thoughts seek to break our spirit and render us useless – they will be cast away.

Though an onslaught of useless, hopeless thoughts try to make a place for themselves in our life – thoughts like, “What if this happens?” or “What if that happens?” – even at moments like that… we can be confident. Content. Comforted.

We can approach Him with confidence, with faith as small as a mustard seed in search of the greatest desires of our hearts. We can approach Him without fear. We can seek Him for eternal blessings, comfort in knowing that we will dwell with Him for all our days, our nights and know that in the moments of our sorrows and our joys and yes, even in the moments through our sicknesses and diseases and all the fears that seem to be a part of the package- He can be found.  We can find Him in His glory and majesty, waiting to extend His blessings of comfort and safety. We can find Him waiting to shelter us under his wings of strength. Willing and wanting to be our refuge. The Refuge we eagerly run to. The One we confide in. The One we cling to.MAN - SAD

When we find comfort in Him, He holds us up when we cannot sustain ourselves. He gives us strength when we are weak. His strength. He gives us comfort when we feel our bodies are failing. His comfort. He gives us a spirit to fight when faced with fear. His spirit. And He gives us joy for our journey.  His joy. When we find this sweet spot, this place of rest, we are filled with an peace that surpasses understanding and we find delight in God.

There are times we cry out, “Hear me God! Hear me! I am crying out to you! Have compassion on me. Show me kindness, gentleness, grace. Answer me. Please!”

We run and chase after Him, desiring Him and Him alone. Is He hiding? Does He really care? Have we angered Him? Is He turning away from us as He turned from Christ in that dark moment upon the cross? Is this our cross to bear and must we bear it alone? Are these the fears that inhabit that utter darkness of despair?

Again, we cry out.

Lord, God, Father, Jesus, Holy Spirit… do not play this game of hide and seek. Do not turn me away. Forgive me Lord, discipline me, rebuke me – anything! But do not leave me!”

All is still.

Quiet.

Do we dare to demand of Almighty God like that?!

King David did. 

Yet, God still loved him and listened to his cries. Even called him friend. David was honest to the core.

We may be honest, as well. Not because David was but because God allows us to be.

So quietly and softly we say  it.

We feel it.

We express it.

After we cry out, “Do not leave me like so many others have done before,” and then convicted, we add, “Like I have done to You.”

We sit there. Emptied of the fight. Weak and yet renewed by His grace. Strengthened with His peace. Humbled because of His faithfulness. Restored with His truth

As it washes over us – a merciful love that knows no conditions, knows no bounds – we sit there and in a soft whisper we plead, “Teach me to be still Lord, to walk in faith and trust you in each step.  May I not waver because of my fears. Do not let them defeat me. They continually seek to destroy my peace, my state of mind, the truth that You still care.”

We take a deep breath. Faith is restored. Trust takes over and fears falter.

“I am confident Lord, that I will see your goodness here on this earth, in the land of those who are living and so… I will wait. In trust and with faith, I will wait.

“Because of You, I will be strong and have hope. I will have an unquenchable courage that trusts in a loving God who fights for me. I will hope for the best, and anticipate the better. I will depend on you to dissipate the darkness in my days and to revive and renew me when the lot of despair threatens to press me down. And, as I wait, I will wait in wonder, watching for Your hand to work in me, while You work for me. And as I wait, I will fall on my knees and You will lift me up.”

10 Things A Parkinson’s Patient Wants

  1. To feel good.
  2. To smell (what’s baking in the oven).
  3. To have people believe that the person with PD isn’t pretending to have a chronic disease. Really. We have better things to do.
  4. For others to understand that although they can’t see all of the effects, the disease is real.
  5. More dopamine. We gotta have more cow bell dopamine.
  6. To not shake all the time. It would be so nice to stir our coffee because we want to.
  7. For others to be aware of the struggles and invisible symptoms people with Parkinson’s face so that they are better able to understand the fervency and urgency of a cure.
  8. To find a drug that doesn’t knock you out for half the day, but instead, knocks out PD.
  9. A plastic bat to hit others over the head when they make thoughtless comments.
  10. A cure. 

That’s all.

Sleeping With the Enemy

Artwork by Sherri Woodbridge Copyright 2011
Artwork by Sherri Woodbridge
Copyright 2011

My first few years with Parkinson’s were crazy. Trying to get the timing of the drugs right, the dosages, the amounts, dealing with side effects. Looking back, I think one of the most frustrating aspects to the drugs was how sleepy they made me.  But because of the Parkinson’s itself, when everyone else was laying their head on soft pillows at night, dozing into blissful moments of deep sleep and already dreaming dreams, I  was chatting online with a new friend who also found herself in my shoes – unable to sleep in the wee hours of the night and morning because we had Parkinson’s disease.

When you think of PD, you usually picture someone shaking, but there’s more to it than that. Like wreaking havoc with your – what was once known as – sleep pattern. Ah, what we wouldn’t give to be able to sleep like a baby again, but that is actually what we do. We sleep like babies. Up and down all through the night, sometimes awaking from bad dreams, sometimes too hot from night sweats, sometimes awaking in fear due to nightmares from the drugs we take.

What to do, what to do.

Here are  a few suggestions to making sleep more attainable. Everyone’s different, so what works for some, may not work for all.

  1.  Put on relaxing music. Quietly, as everyone else is sleeping, remember? My daughter can only fall asleep with her ear plugs in and listening to music as she tries to fall asleep.
  2. Read a book. Preferably a boring one.
  3.  Make sure you’ve taken your medications. If I miss my evening dose, I am almost always guaranteed to have battle with the restless leg syndrome monster and that guarantees me at least an hour and a half more of not being able to sleep.
  4. There is a plethora of sleeping aides on the drug store shelf. Some recommend one over the other, but it comes down to what works best for you, if they’re giong to be helpful at all. It’s a good idea to run it by your doctor first before adding more drug substances to your mix.
  5. Essential oils are the rage and there is actually a mixture for sleeping that my daughter introduced me to that you rub on your feet. Her oil rep made her own mixture so you’d have to contact a Doterra rep or someone who knows essential oils.
  6. Many people are going for other remedies which I cannot recommend given I haven’t and don’t intend to try them, but they swear by their effectiveness (one  being medical marajuana).
  7. Melatonin seems to be a very popular sleep aid for people who find it difficult to sleep and is natural.
  8. Sleep-time tea, Nighty-nite tea… There are also many teas to relax  and  help you get to sleep. Check your grocer’s shelves.
  9. A technique that I have found that works for me is, as I am laying in bed (and maybe oddly enough, I can only fall asleep in one position) I intentionally make my body relax and then begin to pray. It works 100% of the time.

What is your suggestion on sleeping with the enemy – Parkinson’s disease?

8 Things Caregivers Need

I remember not long ago a man confided in me that his wife had left him. He had Parkinson’s disease. Thirty years of marriage. Now, I’m not saying she left because he had PD, but whatever the reason(s), she left. You could say, just when he needed her most. 

It’s not uncommon at all for spouses to decide to leave when the other one gets sick (so much for “in sickness and in health”). I think it could be a matter of ‘having it up to here‘ and then finding out the one you’ve ‘put up with‘ for ever so long now has a condition that will not only made their life more difficult, but the caregiver’s life as well.

                             

Parkinson’s does that to a married couple. To a father-son relationship. To the bonds between mother and daughter. To friends. It comes in and subtlety takes away the ties which once bound these relationships together by a tight knot. What may have been a relationship tied together like loose shoe laces, is now dangling by a thread, if not completely torn apart already.

The PD patient changes. They are physically familiar, but mentally, emotionally – they’re not the same and the caregiver is left struggling with how to deal with their new lot in life – taking care of someone else while taking care of themselves.

If you are a caregiver to anyone, first of all, thank you for your commttment and sacrifice. You might get hit, have to change yet another big girl or boy diaper, clean up another spill, wash another naked body, but we – your charges – appreciate you more than we might be able to say or show..

And now, here are eight little things you can do as a caregiver to, hopefully, make your role a little bit easier….

  • Breathe deeply and when you get one free minute (or two), please do one thing  (or two) that puts a smile on your face. Go out to the garden and breathe in the fragrance of a rose. Put on encouraging music. Read a short devotional. Fix a cup of tea.  And then scream.
  • Don’t focus on the what-ifs. They’ll defeat you most every time. Do focus on now. Things may seem like a tremendous struggle at the moment, but you have to admit that things really could be worse. Today is just one of the harder days, but when the clock strikes twelve, it’s a new day and something wonderful could be ahead that may just make it easier (the patent may turn into a pumpkin!). Don’t lose hope.
  • If you don’t have one already (and most likely what you’re going through is causing you to find one), get a sense of humor. Without one, you’ll often despair. Find something funny in every day. If there really isn’t anything you can find, read or watch something funny. You need to laugh.

                                                      

  • Get yourself into a support group locally or online. You may not think you need it yet (or ever), but you do. Especially as the road becomes bumpier. And it will get bumpier. Get some support in place now, as it will make things easier to deal with later.
  • You need your friends. Don’t alienate them by thinking “you’ve got this“. Accept their invitation of help. Accept their giving you an hour off, washing the dishes, picking up some groceries, dropping the kids off at practice, cooking your family a meal. Give yourself some slack and let your friends feel needed, because if they are offering to help before you have even asked, they may be able to see your need better than you do.
  • Try to think ahead. Your loved one’s mental faculties may not be so great anymore. A daily schedule may be useful with a reminder for doctor appointments, visitors, special occasions, etc. They have white boards that have permanent monthly calendars that you can easily change for each different month and activities. This reduces stress in many ways  – for everyone.

                                                      

  • Don’t beat yourself up. There will be good days and bad days. That’s what life is made of, only now your good days and bad days have had a debilitating disease thrown into the mix. You may have more ‘bad’ days now due to your new, unwanted role. And because this is admittedly, an unwanted role, you hate it. You loathe it. You feel like your life has been stolen along with the one you’re caring for. You have thoughts of packing it in. Giving  up. Throwing in the towel. Leaving the patient to fend for him/herself and walking away. You’re tired, weary, spent, worn out. You want it to end and you feel guilty for thinking and feeling the way you do.  And it’s okay. It’s normal. Your caring for the one you’re grieving over while you’re grieving over what you’ve both lost already and could very well lose still. It’s okay to be frustrated, to go outside for a reprieve and scream. It’s okay to let the tears flow. Just remember: the one you love is in this fight with you, not against you. They are just not able to fight as they once did. Try to remember them as who they were 10, 15, 20 years ago when you laughed together and went for walks together and… you know, those things.
  • Try to remember… if your loved one could get out and mow the lawn again, he’d do it in a heartbeat – if he could. If the wife you care for could brush her own teeth and tie her own shoes, you’d both be ecstatic that you weren’t needed for that anymore. Whatever you’re losing, they are losing as well and have been internally dreading these days coming with a vengeance. If they could, they’d take this bitter cup from you faster than you think.  And remember, the cup will be dry one day, so enjoy it now while there is still some juice left – even if at times it may be sour. 

We don’t mean to be a pain. Trust me. I know.

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…you are not alone.