James Harvey

My apathy was made worse by insomnia.  Recently I started a CBT-I program (Cognitive Behavioral Therapy -Insomnia) for insomnia that seems to be working.  It has given me a sense of control over the insomnia and about 4 extra hours of free time each day.

For about 3 months I had mild, intermittent abdominal pain and no appetite for an evening meal.  Eventually the abdominal pain increased to the point that I went to an ED and, after an abdominal CT, was diagnosed with constipation.  I had been taking oxybutynin (oxy) to calm my urinary bladder to decrease nocturia and apparently the oxy was c…[Read more]

Two books I have found useful are: 1. “A Parkinson’s Primer” by John Vine (basic overview) and 2. “The New Parkinson’s Disease Treatment Book” (published 2015) by Dr. J. Eric Ahlskog a researcher and clinician at Mayo Clinic.  The second book has an extensive index so you can read just a few pages related to a specific subject.

My experience (male, 73) may not be relevant to your situation but when I went to a full dose (100 mg tablet, 2x per day) I had severe urinary retention, especially at night.  I was able to tolerate 1x per day OK.

A general suggestion — I find it useful to keep a written log of my adverse effects to meds because after a few years I may forget…[Read more]

You mentioned that RLS was one problem.  I don’t know if what I have is RLS or not but sometimes when I’m lying in bed awake one or both legs will “vibrate” (i.e., a motor nerve seems to fire a few times in the upper leg which causes the whole leg to shake) for a few seconds.  This occurs about every 3 to 5 minutes.  I moved my ropinirole dose to…[Read more]

In my post of 10-29-19 I indicated that gabapentin was helping me sleep.  Indeed it did help for a few weeks but then in became ineffective even when the dose was increased to 500 mg.  During the period of tapering off the drug my insomnia was worse than normal.

I have what I think of as “vibrating legs,” i.e., the motor nerves seem to trigger creating a brief vibration of one (either) leg.  It sometimes happens every 5 or 10 minutes when I’m lying in bed trying to sleep.  I do not have a sense of some RLS symptoms I have read about, i.e., a feeling that I need to move my legs or a sense of something c…[Read more]

I would mostly be interested in trying CBD to aid insomnia.  Does anyone have experience with this?  Do people develop a tolerance for CBD and hence need to increase the dose?

Thanks for the heads-up.  One more thing to be watching for.  I do have momentary lapses, such as directions when going somewhere or the correct orientation of the key to the front door.

A respondent asked if the gabapentin was effective in aiding sleep.  This is a work in progress. I started with 300 mg and for the first week or so it did seem to help with getting back to sleep after waking up during the night (nocturia).  I tried stopping the gabapentin when it no longer seemed to be helping and the insomnia got worse.  So I st…[Read more]

A PD patient in a MJFox Webinar about fatigue notes the close connection between fatigue and apathy.  For me it seems to be fatigue more than apathy most of the time.  And fatigue is aggravated by insomnia.  I am currently trying gabapentin to help with sleep.  Of course sleep without drugs is better but if there is no or minimal drug overhang the…[Read more]

Fatigue and insomnia are my major problems.  For insomnia, I installed blackout blinds so I could sleep in the morning.  Also, I have recently tried eliminating caffeine (e.g., chocolate) after 3 pm and having a schedule of events leading up to being in bed by 11 pm.  My schedule is 4pm home exercises, 6pm dinner, 8pm aerobic exercise (t…[Read more]

I have not tried video-visits but would like to.  For finding novel treatment options video would open up access to clinical research centers like Cleveland Clinic, Johns Hopkins and Mayo Clinic.

I have insomnia that I attribute to PD.  The things that have helped me:  1. melatonin about 1 hr before bed (I am male and weigh about 150 lb), 2. blackout window blinds so I can sleep in the morning, 3. gabapentin 1 hr before bed, 4. one-half of a carbidopa-levodopa tab when I wake up during the night (at about 3 am and 6 am).  The gabapentin is…[Read more]