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How do you do it?


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#21 Vanillab1027

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Posted 20 March 2013 - 01:33 PM

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.



#22 Golden01

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Posted 20 March 2013 - 08:11 PM

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!

#23 Wondermom

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Posted 21 March 2013 - 01:18 PM

Hi Jenette-
I couldn't stop thinking about you last night. How are you doing today? Your last post was a couple days ago.

#24 Jenette

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Posted 22 March 2013 - 12:27 PM

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.

#25 Beau's Mom

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Posted 22 March 2013 - 01:33 PM

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.
Dianne

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

#26 Wondermom

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Posted 22 March 2013 - 01:37 PM

1. Get to a neurologist who specializes in movement disorder. Stop screwing around with people who don't understand PD. Where are you in Pennslyvania? Contact http://www.pfwpa.org/ Local Helpline: 412-837-2542. No one should be suffering like you are. Be your own advocate and demand decent health care. I had to really fight Cigna to get my DBS done. But I won. And keep trying new neurolgists until you find one you love. I've gone through 5 and finally found a great one who is really on my team.

2. What is your general diet? If you drink soda, STOP NOW! Drink more water. Drink until you pee clear. Try going gluten free. That has really helped me.

3. Exercise. I know it's the last thing you want to do, but you must start moving. Walk, dance, hike, yoga, bike, whatever. Start as slowly as you need to, but get out of bed and start. Even if it's for 5 minutes. Next day, try 7 minutes, then 10 minutes after that..

4. Make a plan. We're all allowed to have a pity party now and then, but rather than staying at that party, commit to making a change each day. Even a little one. If you need to have a cry, do it. Then let it go and move on.

5. You are not alone. However, no one will "fix it" for you. There's no magic wand. To move forward, YOU have to make it happen.

6. Read Yuma Bev's blog; http://parkinsonshumor.blogspot.com/. She'll make you smile.

#27 Jenette

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Posted 22 March 2013 - 09:26 PM

Thanks. I made an appt for April 2 with my original neurologist who will now head th MDS dept at Cooper University Hospital. I have a lot to review with her!

#28 DANCER

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Posted 23 March 2013 - 06:06 PM

Thanks. I made an appt for April 2 with my original neurologist who will now head th MDS dept at Cooper University Hospital. I have a lot to review with her!

so glad. so many pd people were confused after drs at penn left.

#29 Kristakj78

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Posted 23 March 2013 - 08:07 PM

Jennette did u try Dr. Diaz with St. Lukes Neurology? They have been great with me, and she is in West Allentown (not too far from you); I feel so bad u are having these stresses. She is an MDS, and may have a bit of a wait, but at least get on the list.....I totally agree. The biggest issues is the specialists, and their wait times. I am so sorry to hear all this. In regards to the cold turkey of the Mirapex, I know we are all different, but when I had to go to Philly, and cut my meds "cold turkey" for just one day (so they saw my symptoms, as per Dr. Gould; whom I do not see anymore); I was a mess. I was even waking myself up at night gasping for air due to the Mirapex withdrawl. It was horrible. The University of Penn Philly Dr's said that was the worst advice I couldve ever received. Anyway, call Dr. Diaz if you haven't yet... 484-426-2626; I don't know if it would help, but you could mention my name. I have mentioned yours to her, since you are one of the closest in the are to me (she has asked if I know anyone YOPD in the "area." I hope you feel better, with all genuity. Thinking of u!!!!!!!!!!!!!

#30 Jenette

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Posted 24 March 2013 - 01:12 AM

Thanks! I really like Dr. Colcher who diagnosed me. I'm gonna see how bad the trip to NJ is, but it shouldn't bee too bad. I have a level of comfort and confidence with her. It's just that she took some time off during her transfer from UPenn to Cooper, so the wait to see her was long. When I called, I got an appt for 2 weeks which is really good.




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