I was told it could be a "flare", but the PD Foundation claims that "flares" are a myth. My Dad went through a hospitalization with CAT scan, EEG, MRI, LP to r/o encephalitis. They didn't find any brain diseases or vitamin deficiencies. The only thing I could think of was a TIA that didn't show up on the MRI. The sudden onset really has me puzzled. We had 4 neurologists look at Dad with very little info. to give us. Any suggestions?
Thank you in advance, Tedi
Yes there are good days and bad days. Due to circumstances beyond my control I am now alone and beginning a new life again. Now that I in very advanced stage with complications of severe dysautonomia, my wife, after 53 years had me served with divorce papers for my Christmas present just this past year. Although we have 3 children ( in 30 to 40 year range) and 2 teen age grandchildren, I was left all alone, and have only extremely minimal text contact with the 2 sons. Due to the advanced stage I could not live in my house by myself. None of my church friends or neighbors called or checked on me. I frequently had to have the local fire department and EMS pick me up off the ground outside in 10 degree weather and help me get back inside and in bed. Today, I am living by myself in an assisted living facility and due to stage of my PD I now have hospice 7 days a week to assist with bathing, dressing etc. Plus all the others services, every other day. Despite all this, I am not giving up, fighting every day against PD, and gradually reclaiming some of my lost functional capabilities. I continually reseach everything to find answers for improving my abilities. At the monent, the therapists and doctors can see some improvements and are excited plus encouraging me. Yesterday, I spent 2 hours of one on one Pt and OT plus 2 more hours of physical workout by myself, while they were working with other patients, but they can heip me if I quickly need help. I am so satisfied and at peace with where I am living now and with hospice care I am receiving. Even though I know what is ahead, I am fighting with all the strength I can muster to keep that time as far in the future as I possibly can. That is all we can do. Please each of you keep going with all the fortitude you can. Apologize for long rant. But after facing this since the mid 1990s, I don't want to give up.
My first indication that something was wrong with me was that I had these spells where I could not walk or talk or keep my balance. The neurologists could find no evidence of stroke or brain damage and had no idea what was wrong with me. The symptoms would last for a few hours or a few days. I would talk nonsense syllables that sounded like a different language.Sometimes I did not recognize family members or I would say their name over and over again. Afterwards I usually did not remember what had happened. These spells went on for over 4 years. I saw several neurologists and spent some time in hospital.but still no idea what was wrong. After my husband died, I went to live in a different city with one of my sons. I had another "spell" and saw a new neurologist. He asked the right questions and recognized my symptoms as being Parkinsons. I started taking levodopa carbidopa and the improvement was amazing. I m doing so much better now that I know what is wrong. I do have off days when the medication does not work well but other days I feel energetic so it is ll fine. I try to keep a positive attitude and enjoy what I have. No point worrying about tomorrow s it may never come.
If your brain stops you from stepping forward then you can often just step sideways then go forwards. Tricks the brain.
Tedi, I know that this was posted about one year ago. But it's a great question and the answers shows the diversity of the disease between patients. I have had symptoms since 2010 and I was finally diagnosed in 2015. But within the last year and a 1/2 I have noticed freezing, "cement leg", balance loss and difficulty speaking. The freezing is just that. My leg or my arm stops movement altogether and refuses to move. I literally have to physically pick it up or move it with my hand. My brain keeps telling my foot to move so I can walk but it doesn't do anything. I lose my balance several times a week. But I'm also one of the younger PD patients, I am only 39 years old. So, luckily, when I have a bad fall it's usually just serious bruising and some scrapes. In the past 6 months I have noticed that people do not understand what I am saying more often. That is due to my mouth not opening and shutting the way it should or it's because my teeth and tongue are shaking.
I hope some of this helps and I pray your Dad is doing well.
I have begun having trouble on the phone. I'm not loud enough and I feel as though I'm talking with my mouth full sometimes. It's bad enough having to call for repairs, ordering, etc because with many companies the person answering the the phone is in India, Panama or some other out of the USA country.
Another post mentioned good days and bad days. I have that. I've had people ask me how that's possible. I don't know "how". I just know it happens. I also have good hours and then bad hours.
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