Donna K
Forum Replies Created
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I lost my Dad to PD in 2015. I was one of his caregiver’s after he was hospitalized because of delusions. It was an eye opener and I wish I’d paid more attention to his symptoms before he died.
I always thought Dad’s PD came from his job as an electrician. He was electrocuted so many times while I was young. The first symptom we noticed was his chin numbness, and that was 20+ years before he had any more symptoms The next thing I noticed was how soft his voice was and how weird he walked. I asked him to talk to his Primary Dr. and I don’t know if he did. A few years later, his cardiologist was the one who recognized his symptoms and referred him to neuro. He died about 4 yrs later.I was diagnosed with PD in 2021, but of course much earlier than he was.
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I was diagnosed 1.5 yrs ago. I have urgency for pee and poo. It’s not frequent enough to wear a pad, but there are wardrobe changes about once a week.
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I’m going thru my first experiences with stiffness. The left hip freezes and is so unpredictable that I’m afraid to go for a walk just because I might get stuck along the way. It’s difficult to manage walking and I know I need a better cane.
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<p style=”text-align: left;”>I hit it in May last year, and I will again this year. It’s really devastating to finances. I’m in a Medicare advantage plan. Drug costs are really terrible. For me it’s the inhaler and the liver med that are 🤑. My retirement wish was to see the Grand Canyon, but I wonder if that will happen.</p>
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I want to move, but the amount of stuff I have, well it’s overwhelming. Where do I go? I don’t have enough $ to go to a senior community with nursing component. Assisted living is similarly priced. I live just above poverty level at $32thou and can’t afford more than I spend on the mortgage. I’d like a condo, either first floor or in an elevator building. My son wants me to stay in my house, and he lives close and will come over when I need help. I just want to need less help.
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I have thyroid cancer since 2002, and the treatment consists of surgery followed by radioactive iodine treatment. Later, the eye surgeon told me that he saw a lot of people who had thyroid treatments that had eye ducts that closed up. He said that the iodine closed up the small places in our bodies. I think that my liver disease, primary biliary cholangitis (the tiny ducts in the liver close up and bile can’t get out) was also closed up by the iodine treatments. I think PD might be another side effect from iodine treatments. None of the Drs are interested in this theory of mine.
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Hi Mary Beth, DonnaMK replying to your question on how I found out about PD diagnosis. While at work about 5 yrs ago, I’d filled my glass and was walking to my desk, and my shirt was wet. I went back and filled it again, and the shirt was wetter. The 3rd time I watched and the right hand was shaking and the water spilling. I was sent to a movement neuro Dr, and she tested and we watched until approx 2 yrs ago, when I failed the test. I delayed starting meds, because I just didn’t want to believe it. Started med a few months later after nearly everyone begged me to.
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My life is ok right now. I had high expectations for retired life, and now know that I won’t be doing all the hiking and travel. I have to rest way more than I thought. 1 day if activities means 1 day of rest. Hoping to increase stamina by doing more each day.