[Lorella Howard]

Does anyone have research articles or websites for the infrared coronet, therapad, or mannitol? My husband is a retired Internal Medicine physician and doesn’t want to try anything he can’t read research on!

[Lorella Howard]

I hear you all! I am a nurse educator who went to half time the year covid hit, then retired to just doing a couple online courses so I could be home full time as he is now needing constant supervision. My husband was diagnosed in 2000, retired in 2014, disease was slow in progression until last few years. His Duopa pump helps smooth the dose levels some, but he still has many times of dyskinesia or crashing low. We are trying different adjustments to try to get on a better track.  This year, illusions and delusions have started, which are challenging, they were helped some by adding Aricept. Yes, I see personality and mood changes. I sometimes think they are more upsetting and harder to deal with than the physical challenges. I try to explain that what he sees is not really there, etc. He gets angry at times with his disabilities or how long it takes medication to work. He doesn’t want reminders, but gets distracted and forgets to eat, needs physical help with clothes, etc. I find my frustration level high, fatigue and sleep deprivation severe. I constantly remind myself that I’m not angry at him, but at the disease. When there are moments of clarity, and I see him being more himself, I try to savor it. It’s scary, and I try not to think that I may look back on these moments as “the good old days”! I don’t know how I would keep my sanity if we didn’t have 3 grown children nearby who pitch in and stay with him while I take another extended family member to multiple health appointments. Watching our children and young grandchildren  have to deal with these changes in their dad and grandpa is both heart-wrenching and rewarding.

Is there any way you could have any home health help for a few hours a week? If you could get out a little, it would help you mentally and emotionally. If a friend could visit and talk, you would feel less alone. Try to keep up old friendships and as many connections as are comfortable. You need to take some “minute vacations!” Keep sharing.