I am so, so sorry for taking this long to post something, anything. I also thank those that went above and beyond by emailing me to which I also didn't respond. The long & short of it was due to clinical depression. A separate monster on its own, isn't it?
I have mostly good news tho I'm still trying to wrap my mind around it. I was diagnosed with PSP the summer of 2012. I was so sick. The 1st of 3 visits with my Neurologist, in addition to going over test results, was end of life planning. Very sobering stuff.
He had said all things considered with me, I had about 5 years left; give or take, and it was all downhill from that point. When I saw him December of 2015, he said I'd need home care or assisted living or more advanced care by the end of 2016; all based on my symptoms, tests, etc.
In fact, I was late to that appointment by 30 minutes; I'm never late; been there how many times over the years, but I had gotten lost on the way. Really shook me up. I did tell him the truth about it; it did not help my case of living independently.
I remember leaving his office that day both terrified and just pissed about the whole situation of my window of time shrinking. I got angry at PSP, very, very angry. It was stealing my life; it felt like a tediously long death each day. I haven't read my previous posts; if I wrote I was angry about it, I was disconnected from my feelings in general; defense mechanism I suppose. That visit got me touch, for sure. I was devastated.
I hadn't allowed myself to really FEEL angry, about it since I was diagnosed; after all, I was too busy making EVERYONE else feel better about my predicament & impending demise rather than the other way around, but for my best friend; God Bless that woman; her name is Connie.
So my "my 5-year plan" seemed pretty simple. According to my doc, I only had 5 and they would be miserable and I absolutely had to plan for it. I got so depressed thinking what a burden I would end up being. I grieved for my children's future grieving, but could see they already were. So was I.
I was grieving my own life/death as I grieved for them. Did tons of reflecting and getting honest with myself; and, yes I admit I did a little fist shaking at God at times.I never fell into the "why me"s; why not me? Or the neighbor down the street I don't care for?I I do believe everything is purposeful, even if unpleasant. It's not a punishment, but an opportunity to learn. If you asked me that on a bad day, my answer may be different, but fundamentally I am a faith-based person; no particular denomination, but I believe in what I cannot see.
That December 2015 appointment with my Neurologist lit a fire under me, When I was alone in the house, I would loudly proclaim "I DO NOT HAVE PSP! or "I WILL NOT ALLOW THIS TO HAPPEN TO ME!!!! Still felt unwell but thought it couldn't hurt. I needed to take some power back. Sure many of you know what what I'm talking about.
I spent 2015 to the present extra ill from the side-effects of the medications they prescribed for me to try to control the symptoms, such as memory loss, muscle spasms as well as clinical depression arising from my medical issues. For example, the 2 memory meds I was on since I was diagnosed tore my stomach up; hurt, hurt, hurt, and developed a serious case of gastroparisis. My stomach and intestinal tract stopped moving. It was awful and took months to resolve.
I could go on but you get the gist, right?
I had it. I went on-line and researched one-by-one the medications I was taking which was simply too many, and slowly weaned myself off all medications but for a few, particularly the ones that interfered with digestion. I was in so much pain every day for months, weren't helping my PSP symptoms, and worsened my quality of life; daily. I did not seek the advice of my doctors; I just did it.
It helped me feel better, but what I did could be categorized as stupid at least, deadly at worst. I DO NOT IN ANYWAY SUGGEST A PERSON DOES THIS W/O CONSULTING THEIR MEDICAL PROVIDER/S. I just got lucky.
After my very depressing visit that December of 2015 in which I left feeling like my jig was really up, I really dragged my feet about making follow-up appointments. Made them but would cancel, thinking bad news can wait.
I saw my Neuro the fall of 2016 and it was as if he saw a ghost. He couldn't believe how well I looked and sounded. It my first clue or what was to come. He ordered more tests. Met with him in January of this year; all the tests were normal.
HE SAID HE MISDIAGNOSED ME WITH PSP. I do not have it. Period. I asked him if I was in the lull he often referred to early in treatment where we could slow it down for awhile, but he said absolutely not; it wouldn't go on this long. And, in the present I would be so much sicker if it was PSP.
My daughter, Melissa, was with me at that appointment; it was wonderful. I felt like a million pounds were lifted off my shoulders. My Doc DOES think I'm developing a degenerative neuro disease and most likely involving my autonomic nervous system. Time will tell.
So was my improvement a miracle or straight-up misdiagnosis? I'll take either or both.
I don't want you to think I'm a neuro-typical person and up everyday living a 'normal' life. Uh, uh. I'm still falling, usually backward. My other daughter, Katy, who lives with me shoos me back to bed. I fell once not so long ago and couldn't get up. Completely freaked her out because I was dead-weight and she couldn't move me. So, tho I try to tell her being up is a good thing in her mind it's a crisis waiting to happen. Katy has Asperger's and doesn't always reason things out very well.
Still have tremors w/o explanation tho not every day anymore. My tremors involve my whole body sometimes; not pleasant to watch.
My short-term memory has really taken a hit since I've been off those meds. My Neuro said he was glad I stopped taking them when I did because of the digestive problems I developed. I was miserable during that time. Still have problems with it.
And because of my digestive problems, I couldn't eat much at all. My Internist started me on a course of high-dose steroids, thinking it would help me during 12-15 and started weaning me off 6-16. It did nothing for me except for gaining 40 lbs. When I started to lose the steroid weight, I continued to lose 4-5 lbs. a month because of the digestive problems. My weight fell to 118 spring, after peaking at 165 during August of 8-16.
I'm also stuck with sinus tachycardia for unknown reasons. That started when I was weaned off the steroid. All of life, my pulse chugged a long at 60 or 70 until the summer of 2015. W/O explanation, but substantiated by medical records going back to 2006 suddenly take-off like a horse race? My 'resting pulse' is about 120 and goes up from there. It makes me real tired. Tests of my heart itself are perfect; it's in the wiring they say...I test it at home too...the number is high tho BP is good. Goes back to my autonomic nervous system they think. Have to follow-up on that.
So, now I'm dealing with malnutrition and it's left it's mark; it's weakened me. I've always have wonderful teeth. How did I arrive at the subject of teeth?
I noticed about 1 year ago that nothing in my mouth looked very healthy. I admit I hadn't been in for a cleaning for a long while due to being so ill and home-bound. And my Dentist I've seen since I was a child went and retired on me. And I'm phobic about dental work; always have been.
Been asking my Docs and friends for recommendations for a dentist. Not a one has come my way. I did see one I came up with in an affluent part of the city. He cringed when he looked in my mouth. Didn't even take x-rays. He was confident in his opinion that the pattern of decay he saw was a direct result of the medications I've been taking over time, complicated by malnutrition.
He said "the very medications we give you end up doing as much or more damage to you than the problem you're being treated for." Then he shooed me out of the office with a casual 'good luck', probably thinking he wouldn't get paid if he did at least some of the work. Price tag for repairing my teeth? $20 to 30K. Right. Not sure what I'm going to do about that yet. My dental insurance is $1K. Laughable. Barely.
Okay...I'm going to wrap this up with a few things I've learned during this ordeal:
I am so relieved and grateful I do NOT have PSP. Truly. But at the same time, life doesn't go back to normal. All but one friend stuck thru this with me; the others scattered like bugs. So did my immediate family. The best thing you can do for someone in a similar circumstance is to share the gift of your TIME. In person time, not social networking time. I'm very lonely and have been for a long time.
Never let a Doc rush you out the door or minimize what's happening to. Doctors are people just like you and me with a higher level of education. A person can have umpteen degrees, but you don't learn about humanity in a book; you learn it thru life experience. It's humanity that defines and binds us. Bring someone with to serve as a 2nd pair of ears; can't stress that enough. Let that person ask the tough questions if you feel overwhelmed. And if a Doc does NOT treat you with the humanity you deserve; don't go back. Find someone you're comfortable with.
Follow your instincts/gut even if it goes against the grain of what your Doc says. Speak your piece. Calmly of course. A good part of my professional life was investigating medical malpractice cases to include docs, nurses. hospitals, etc. I never tell my doctors that or they'd clam up on me, feel threatened etc. But it gives me a more global view of what goes on behind the scenes. And a lot does. As well as a lot of ego. When interviewing the doctors we insured because of a claim of negligence, I always ended the interview with "If you were presented with the same set of circumstances today, would you do anything differently?" That question would usually humble the cockiest of Doc's because the answer was usually 'yes' followed by an explanation. It didn't necessarily mean there was negligence, but more often than not there was.
Regarding my Neuro...it's been suggested I file some form of complaint if not litigation against him for his misdiagnosis. Certainly I have a basis to. I spent a very hard 4-1/2 years 'knowing' I could/would get worse pretty much anytime and then die. My kids were and still are terrified to come home or wake-up and find me dead. Who can blame them?
But here's the thing - I love and respect my Neuro. I had never heard of PSP; barely knew anything about Parkinson's in general except it was something you didn't want to have. All the symptoms I was experiencing read like a primer on PSP. He has always treated me like a person-we have conversations vs. a Doc 'talking at me'. I put a lot of value on that. He's just a really good guy. I will keep seeing him. There's an explanation for what's happening to me. For now, it's taking it's sweet-time, and I will make the very best of each day. And maybe come-up with a 10-year plan.
BTW - I finally have nick-name given to me by my girls...GROUND ZERO...that cracks me up.
God Bless Everyone,
Judy
What we don't know
