Tag Archives: Parkinson’s disease

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.

Most Popular Posts on Parkinson’s Journey

imageThese are the most popular posts on Parkinson’s Journey:

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People with Parkinson’s were polled as to what their fears are about PD. These are the answers.

What does it take to be an advocate for PD?

A poem on what people with PD live with

Facts about PD infographics

10 things every person with PD wants in life

A Song for Parkinson’s Disease by A Woman with Parkinson’s Disease

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Dora Leonard is a reading teacher in an elementary school in the suburb of Chicago, a wife and mother of 3 children.

Dora was diagnosed with Parkinson’s Disease in December 2013; two months after she turned 50.

Inspired to write a poem in December of 2014, she later asked her 22-year-old college son, Jeremy, to compose the melody for it. They asked a singer from their church to sing the mother-son creation for them and hence, the song I Will Choose was created.

The sales proceeds of this song (available on iTunes) is donated directly to the Michael J. Fox Foundation research for finding a cure. Dora is hoping that by sharing this informationw with others, it will aide in finding a cure for those who live with Parkinsons’s disease.

I Will Choose, by Jeremy Leonard, is sold on iTunes, Amazon and Google Play for 99 cents. You can preview the song by clicking on the link ‘I Will Choose’ above.

This Is Parkinson’s

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my knees are shakin’
it’s not from being nervous
this is parkinson’s

stiff muscles abound
throughout my aching body
this is parkinson’s

lips quiver, teeth click
smile turns into a frown
this is parkinson’s

toes and fingers bend
involuntarily ‘cuz
this is parkinson’s

legs, arms, sides, back and
stomach seize up in great pain
this is parkinson’s

voice falters and fades
i shout and they yell ‘speak up’
this is parkinson’s

i choke on my food
swallowing becomes harder
this is parkinson’s

tripping and falling
walking like a cute penguin
‘cuz of parkinson’s

writing becomes hard
what once was legible is
now parkinson’s scratch

depression and some
forgetfulness issues are
because of it too

the little monster
is to blame
for most all of
that is wrong with me

the good and the bad
and the happy and the sad
a blessing, a curse

badly plugged poop stools
(to make it fit this haiku)…
due to parkinson’s

with one side I am
almost free and with the other
i am bound in chains

to a disease they –
I – we – all call parkinson’s
‘cuz that’s what it is

confusion and a
thing called forgetfulness could
be the… i forget

greater now is the
understanding, compassion,
‘cuz of parkinson’s

confusion, and some
irritability are
blamed on parkinson’s

and why not? if i
must bare this crazy disease
i ask you – why not?

why not blame it for
being snappy and silly
and for all things else

like running into
walls and tripping over chairs
and things of that kind?

why not blame it for
everything in life gone wrong?
seems fair to me, huh?

it took from my life
what wasn’t its to take and…
it just keeps taking

but am i angry?
no – i hold no grudges on
things i cannot see

and though i can see
God in this world around me
i aim no blame at Him

i do not see Him
in this hideous disease
but because of it

i see Him because
of His comfort and His care
and the way He loves

with His strong arms and
His great, matchless mercy and
never ending grace

He is in the all
His faithfulness trustworthy
with hope i endure

it may be ‘cuz of
parkinson’s
that i suffer
or maybe it’s not

but this i do know…
it’s because of God i live
joy unspeakable

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