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How do you do it?


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#1 Jenette

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Posted 07 March 2013 - 07:52 PM

I read all your posts and most of you still lead happy productive lives. I thought I could do it, too. But it's so damn hard! It seems I have more bad days recently. This tracheotomy is a pain in the ass. I really want to take a real shower and wash my hair the normal way.

I'd like to poop without a suppository, and without giving birth to a hemmorhoid big enough to name. And, without having a sore hinny the rest of the day. I'd like to do more than one activity a day. If I do laundry, I'd still like to go shopping after dinner.

Today was one of my worse days in awhile. I wake up with a good cry, and I settle in for the night with another one. I guess if it keeps up, I'll ask for an antidepressant. Soon.....soon I won't want to get out of bed. Soon I won't want to bother. Soon, I'll be there, but not yet.

Still don't have a neurologist. And, get this! I am seeing the nurse practitioner until they hire a movement disorder specialist. When I called to discuss my meds, I'm told she's out til the end of May. Therein, I believe, is the root of the problem. There are none in the area, and then when we get out of town, they don't take my insurance.

Sorry for the long post, and thank you to those of you who took the time to read it. It was therapeutic to put my thoughts down in writing.

On a brighter note.....GO FLYERS!!!



#2 Delta

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Posted 07 March 2013 - 08:37 PM

I think part of what you're going through is the natural grieving process when you are diagnosed with a chronic illness. Your world has changed significantly. Keep close to your doctor (I assume you have a primary care doc) and keep the depression in check. Keep coming here and we'll provide the best support we can also.

For me, I woke up on my birthday one year and realized I had stumbled through the last 4 years of my life. I remembered very little of my children growing up during those years. I was over weight and depressed because of my chronic illness. I knew I had to fight back and regain my life. I got a new haircut, new clothes, ,started working out and wearing makeup. Yes, somewhat superficial, but it did the trick. It also could be that I finally had accepted my illness and had learned how to live with it.

I lost 4 years. I don't wish that on anyone. Writing about it helped me also.

Goodluck and keep fighting!

Delta

#3 Jenette

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Posted 07 March 2013 - 09:43 PM

After having a 3 goal lead, even Flyers let me down. Final score Penguins 5 Flyers 4.

Time for bed. Tomorrow has got to be better

#4 DANCER

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Posted 07 March 2013 - 10:14 PM

Wish that the Flyers could have won - hope tomorrow is a better day for you!

#5 KimAgain

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Posted 08 March 2013 - 01:46 AM

There are lots and lots of ways to trick yourself into getting out of bed every morning and facing whatever the new day brings, but the fact is, that's just what they are--tricks. The reality is, sometimes (all times, maybe?) this disease truly does suck. So, what are we left with? Well, frankly, the tricks! Here are a few of my own...
  • Make sure someone depends on you - even if it's only a goldfish.
  • Refuse to pee the bed (if you're going to keep THAT promise, sooner or later you'll have to get out of bed!)
  • Invent three new swear words as soon as your feet hit the ground--it'll distract you from your twisted feet (and, it's harder than you'd think.)
  • Find yourself a theme song (mine is, "I get knocked down," by Chumbawamba) and sing it loudly (or, as loud as your soft Parky voice will permit) as the need arises.
  • Cry. Give yourself a ten minute cry time, let loose and sob like a baby, then sing your theme song and declare the pity party over (ten minutes is just a guideline, you may need more or less.)
  • Laugh - as often as you can find the courage.
  • Do something nice for yourself as frequently as possible (I like to have a special tea, just to feel elegant and still a part of the world).
  • Call a friend.
  • Keep a Journal.
  • Be creative.
  • Think of one hopeful thing a day.
None of that is easy or a panacea for all that ails us, but as coping skills go, they can be very distracting and, after all, isn't that the object of the game--to get our minds off of things?

Dream lovely things for yourself Jenette, because it never hurts to dream.
G'night dear,
I'm off to dream about Spring flowers and the planting of a veggie garden,
Hang tough dear,
Kim

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#6 jb49

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Posted 08 March 2013 - 06:07 AM

Tricks, that is good Kim.

I live on a small hobby farm. There are lots of physical activities that are required to keep it going. We do have the option of moving to the city and live near the kids and eventually that may happen. But right now I need to go out every morning to feed horses chickens and a bunch of barn cats. As long as I can do this, I will. Because I do keep going, I can. Your positive attitude, tempered with tears and tolerance is sweet Kim. Thanks.
Don't be hard on yourself, try your best and be strong!

#7 christie

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Posted 08 March 2013 - 09:18 AM

Great, beautiful words from Kim. Attitude is of the greatest help, no doubt.

BUT, from a "practical" point of view-if your meds don't work properly to give you a decent symptom relief, you will feel like crap, no matter how hard you try to be positive.
The best key to living happily with PD-is there such a thing? -is to optimize your treatment under supervision of a good MDS in order to feel as normal as possible to do the things you love. whatever these are.
As for the initial question "how do we do it?"...well, apparently, not all of us do it Jenette. not me at least. not yet. and i know that no attitude-no matter how positive-will make me happy again. not until i start living like a near-normal 37 year old woman.
As for crying, i've noticed that whenever i get sad, cry, let it out etc, my symptoms are much WORSE afterwards.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#8 Luthersfaith

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Posted 09 March 2013 - 12:33 PM

One day at a time. Enjoy the little things of life. A flower. The dog. A kiss (Among other things). Always being grateful for the things I can do.
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#9 MarciaJ

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Posted 11 March 2013 - 08:20 PM

I take one day at a time too. Concentrate on the fun, good part of life. I know this is not easy thing to do on some days but try your best . That is all any of us can do.

Hugs
M
<3.<3.<3.

#10 Jenette

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Posted 12 March 2013 - 04:01 PM

Discussed my meds with the nurse who said she will speak to one of the covering doctor. Doctor agreed that the Mirapex is most likely the cause of my edema, weight gain, and more. He wants me to stop the Mirapex cold turkey and I'd Start on stalevo,

I hope I don't have withdrawal symptoms!



#11 woodbee

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Posted 13 March 2013 - 12:39 PM

Jenette I hope you'll go off miripex slowly, in spite of what your doc says or consult with your pharmacist. maybe he would call your doc and remind him that Miripex should be decreased slowly to avoid dopamine withdrawal symtoms (DAWS)

#12 MarciaJ

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Posted 13 March 2013 - 08:16 PM

I was taken off the generic of Miripex but slowly and as I decreased It I increased the replacement.
<3.<3.<3.

#13 OneWingedVictory

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Posted 13 March 2013 - 09:40 PM

This is what works for me (to use a riverboat metaphor in honor of my Mississippi River roots) --

Know that life is like a river and this turbulence will pass. Optimize your ability to navigate the stream by consulting with experts. Be informed. Listen to those who have traversed this route before you -- their wisdom and experience has great value. Be vigilant and pay attention to where you are headed. Search out more hands to help when necessary. Celebrate incremental victories. Remember that there is always someone who is depending on you to complete the trip.

And never stop dreaming of making that crossing, no matter the odds.

OneWinged Victory

Edited by OneWingedVictory, 13 March 2013 - 10:16 PM.

The One Winged Victory of Samothrace is a metaphor for our struggles, despite the odds, to keep steady and accept grace in the face of punishing adversity.

#14 Jenette

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Posted 14 March 2013 - 02:02 PM

Day two cold turkey from Mirapex ER and so far so good. Just fatigue

#15 Brad24

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Posted 15 March 2013 - 08:25 AM

At first I didn't want to see anyone or do anything. I have learned that's all wrong. Now I love my wife and children up as much as possible. Take advantage of good days. Meditate, exercise and laugh a lot. Look up an old friend. Go out with my wife or friend. Cuddle with my wife on the couch or in bed watching a movie. Remember you have PD it does not have you!

Good luck Jenette
DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#16 Jenette

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Posted 19 March 2013 - 06:45 PM

I got an appt with my original doctor on April 2. It's gonna be a long two weeks. I'm in constant pain, and end of day is unbearable. I pop 2 Vicodin, followed by vodka or jäger, then crawl into bed. Sex? What's that? This damn trach is a pain in the ass. The dr wants to do laser sx to provide an opening and remove the trach. I'm worried about the later effects of PD and swallowing, etc. I need to discuss it with my MDS on the 2nd. Til then, life sucks and I'm miserable. Please pray for me. I'm not in a good place.

#17 Golden01

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Posted 19 March 2013 - 08:18 PM

So sorry, Jeanette. The MDS visit will be here before you know it. Prayers are surrounding you.

Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine; Sister and Best Friend from Childhood also have PD


#18 Beau's Mom

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Posted 19 March 2013 - 08:32 PM

Jenette, I'm holding you in the Light constantly. The good thing about being at your absolute lowest point is that you have nowhere to go but up! (((HUGS)))
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#19 jb49

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Posted 20 March 2013 - 08:53 AM

Dear Jen,

Pd sucks big onions. It is an awful disease and you seem to have more than your share of complications with it. We are all worried for you and care for you. Our collective Karma and thoughts and good wishes are centered on you in Pennsylvania and we hope that you get solutions to your problems. I send you a virtual reassuring hug,

jb
Don't be hard on yourself, try your best and be strong!

#20 Luthersfaith

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Posted 20 March 2013 - 12:55 PM

Jen, please be careful with mixing booze and drugs. One day at a time. Sometimes one hour at a time.

Jb... I... well... I... I... have to ask how you understand 'Karma." (another day, another thread?)
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)




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