Sorry, this is a bit off topic, but I can’t stop thinking about something I discovered in researching on the internet.
DH seems to be entering the final stages. As many of you know, he entered the nursing home just before Thanksgiving. At that time, he could walk on his own and talk some, feed himself. Now, he needs assistance walking, spends most of his time belted in a chair (so he won’t slide off), can barely speak and needs to be fed. He shows a lot of Parkinson’s symptoms, although he has never been diagnosed with Parkinson’s.
The NH Dr. attributed some of these symptoms to the Haldol he was receiving since a few weeks before entering the NH. He has been weaned off of it and shows some improvement, but is still shaky. He is receiving speech and physical therapy, but I’m not sure how effective this can be at this point.
DH had encephalitis as a teenager, so I googled encephalitis and Parkinson’s and found a condition known as Post-Encephalitic Parkinsonism. Apparently, there was an outbreak of this just after World War I, where people would have Encephalitis and sometimes years, even decades later, develop Parkinson’s symptoms. (A form of this involves a sleeping sickness that was profiled in the film “Awakenings” with Robin Williams and Robert Deneiro.) They say this is extremely rare today, but I wonder. Is it possible there are cases diagnosed as Alzheimer’s or plain Parkinson’s that are really PEP?
Sorry this is so long, but it brings me to my question. Do any of you have LO’s that were diagnosed with Encephalitis at any point in their lives?
I don’t know why this matters so much to me. The outcome is more or less the same. It’s just that DH has deteriorated so very rapidly over the past 2 years, and especially over the past year. Just over a year ago, he could be home alone, and was even driving. I know that EOAD can progress rapidly, but this seems to have progressed at warp speed! Even the NH doc seems mystified by this.
All the unknowns just make me crazy. No one in DH’s family had any signs of AD. He’s the youngest, for God’s sake! He’s only 54 years old. I just feel like I need more answers. I may be going down a blind path, but I feel compelled to pursue this. I think I’ll mention it to the Dr. the next time I speak with him. He may think I’m crazy, but I don’t care.
Dear dear Kelly, so many of us have been thinking of you and what you must be going thru. from what i know those drugs like haldol are BAD news anyway they give it. A lot of meds they could have him on could be a cause of his decline. get a list of what he's being givena nd bring it back here. there are many good minds here maybe some can help you sort thru this..have no clues about encephalitis though. thats double wammy if true but would give you at least some reasons. if it were ME -and my spouse was declining after admittance..i would get him off ALL drugs that werent life saving at this point and see if he improves. some just cant tolerate any of these black boxed drugs and it leaves them unrecognizable. i hope he makes some improvement soon. let us know what the drs say. take matter into your hands as his advocate if you need to...they can always put him back on the meds if he really needs them..just a thought-good to hear from you, take care, Divvi
Kelly, my husband had rheumatic fever as a kid. THat's influenced his whole life. He had an infection (staph? strep? opinions differ) that went into his leg and caused that leg to stop growing at 14 - which caused scoliosis and ever thereafter at times of stress episodes of the infection flaring up (though we didn't realize what was happening at the time.) I've recently seen somewhere (WHERE, Sunshyne?) that anti-inflamatories affect AZ (and some studies say no they don't) but if an inflammation is caused by an infection (as it is), and anti-inflammatories affect AZ, then might not any infection affect the likelihood of AZ? This includes both encephalitis and rheumatic fever.
I'm reminded of how stomach ulcers used to be thought of as caused by stomach acid caused by stress; one drank a lot of MILK to calm them. And then it was discovered that they were caused by Helicobacter pylori, and treatments changed completely! Wouldn't it be lovely if we could just dose our spouses on anti-inflammatories and have them be better?!!
It's great to hear from you, Kelly! We worry about you and your spouse.