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Jenette

How do you do it?

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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!!!

 

 

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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

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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

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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

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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.

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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.

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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.

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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

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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!

 

 

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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)

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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
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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

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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.

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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)))

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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

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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?)

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Jenette,

 

I am sorry to hear of your latest trouble. You've certainly been dealing with a lot of extra crap lately! Please be careful doubling up substances that are depressants, because that can more than double their effects. I'll be keeping a good thought for you!

 

Perhaps you MDS has had a cancellation and could squeeze you in sooner so that you can get the information you need? It might be worth a try to ask.

 

 

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I've found that sometimes "the next five minutes" rather than a day or an hour at time sometimes works for me. I can always figure out a way through those next five minutes, then five more, pretty soon, I'm ready for that day or hour at time. A good friend of mine who happened to call one day when I wasn't able to figure out even the next five minutes gave me the best advice: "Go outside". I did and she was right. Just sitting in a chair on my porch got me through those five minutes and soon I was able to tackle what had come my way. Sometimes just sitting by a window has been as good as actually going out!

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I'm ok. After speeding two days in tears, my daughter marched me in to see my PCP. She put me on Wellbutrin150 mg ER. I was on it many years ago. I've had very little sleep. The constipation was severe and of course I gave birth to hemmorhoids. Yesterday they were very painful and I stayed in bed off my feet. Fell asleep real good last night with the help of Jeremiah Weed Sweet Tea. But, have been awake since 3:30 with the usual stomach cramps, etc. Constantly feel like someone has their finger up my butt

 

It got worse after I switched to Miralax. I'm going back to what I know works best for me....Milk of Magnesia with the occasional enema. I'm still not in a happy place, but I'll get there. Also - have been taking 1 1/2 Sinemet every 21/2 to 3 hours.

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It's good to hear from you, Jenette. I know how difficult constipation can be. Miralax stopped working for me years ago. I take a prescription called Amitiza, which is for constipation dominant irritable bowel syndrome. That, along with stool softeners and lots of oatmeal and water, keeps things moving. When things get really bad, it takes two bottles of Magnesium Citrate to really clean me out good. Then I start the whole cycle over again. If constipation misery loves company, I'm right there with you!

 

Hopefully the antidepressant will help, too. I was taking 1.5 Sinemet every three hours when my MDS added too much Sinemet CR to the mix. Now I take varying combinations of the two Sinemets every three hours. It's quite a juggling act.

 

When you feel better, you might find the webcast at www.pdf.org on Non-motor Symptoms of PD informative. It is a little over an hour long, with voice-over slides. It described me to a P! Unfortunately, DBS doesn't work on non-motor symptoms, so I didn't qualify for that.

 

Sounds like you have some family support, which is good. Keep your chin up, but only if it doesn't hurt to do so or make you more tired. You're in my thoughts constantly.

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