How do you do it?
Posted 20 March 2013 - 01:33 PM
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.
Posted 20 March 2013 - 08:11 PM
Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine, Levodopa (1X/Day); Sister and Best Friend from Childhood also have PD
Posted 21 March 2013 - 01:18 PM
I couldn't stop thinking about you last night. How are you doing today? Your last post was a couple days ago.
Posted 22 March 2013 - 12:27 PM
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.
Posted 22 March 2013 - 01:33 PM
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.
I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.
First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.
Diagnosed December, 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.
Current medications at age 62: Sinemet 25/100 ODT every 2.5 hours while awake (7/day). One Sinemet 25/100 CR between midnight and 4 AM. Trazodone 200 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 115 caregiver hours/month keep me sane.
All of the above subject to change based on progression, stress level, and dyskinesia. Whew! I'm glad I finally wrote that all out.
Posted 22 March 2013 - 01:37 PM
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.
Posted 22 March 2013 - 09:26 PM
Posted 23 March 2013 - 06:06 PM
so glad. so many pd people were confused after drs at penn left.
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!
Posted 23 March 2013 - 08:07 PM
Posted 24 March 2013 - 01:12 AM
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