Posted 29 May 2013 - 11:23 AM
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 29 May 2013 - 06:34 PM
I wish you the best.
University of Rhode Island
Posted 30 May 2013 - 01:28 PM
It is hard for me to provide advice with such little information. But here are some thoughts. First, you mentioned that you were diagnosed with slow esophageal motility. I hope you are seeing a GI specialist, who can advise you about this problem. I like to think of this problem as “The clogged drain problem.” In other words, even if you have a strong tongue and can swallow efficiently, the food is getting backed up, much like a sink with a clogged drain.
There are some resistance exercises, that Dr. Mahler mentioned, that could possibly improve your tongue strength. But you must be under the care of a speech pathologist that specializes in swallowing. Your speech pathologist could design a program to hopefully improve tongue strength and to assist you to learn how to properly position your food after it’s chewed and avoid unsafe behaviors like kicking your head back while swallowing. There are various exercises such as “tongue push-ups” , effortful swallowing, and expiratory muscle strength training – but they must be taught and your performance should be monitored by a SLP.
Finally, try to eat your meals during the middle of your medication cycles versus at other times. This could possibly maximize your swallowing and you might find that at this time you have better oral control, particularly with your tongue.
I hope these ideas are helpful. Above all, I urge you to seek guidance from a GI specialist and a Speech Pathologist who specializes in swallowing problems.
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