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Bruce fell and suffered a concussion in September 2015. We thought he would be fine in a day or two. Little did we know how serious a concussion could be. After months of doctors’ visits, multiple forms of physical therapy sessions 2-3 times a week, missed work, and dozens of assurances from the doctor’s that everything will get back to “normal” “soon”, we began to get weary. The last treatment involved his eyes, and while he made significant improvement at first, he was no longer getting any better and he still had a way to go before the doctor would be satisfied to release him. We were now heading into June 2016.
In the meantime, we were also concerned to learn why he fell in the first place. It wasn’t his first fall, and he was still falling occasionally despite the physical therapy that was supposed to help. We finally got a referral to a neurologist in early June. He told us Bruce has an incurable degenerative neurological disorder. He told us he couldn’t be more specific at this point, and recommended we go to the Mayo Clinic for evaluation. He told us they should be able to give us a more specific diagnosis and might be able to help Bruce get into a clinical trial. He recommended Bruce at least use a cane when he walked to help him keep his balance, and told us he should avoid steps.
We couldn’t get an appointment to Mayo until late August, and we began to see when and where we could move because we lived upstairs, and going up and down 16 steps every time we needed to go somewhere was not good for Bruce. A downstairs apartment became available one week before our first trip to Mayo.
We got everything moved and spent a week at Mayo Clinic. The neurologist in charge of Bruce’s case told us Bruce has Parkinsonism. He told us it is not Parkinson’s Disease, but a form of it that has some of the same symptoms, plus more, and is much more severe and progresses much more rapidly. He told us he could not tell us which Parkinsonism it is until they do a lot of tests, and he would not tell us which one it is until he is 95% sure.
They ran numerous tests and evaluations and were unable to get all the tests they needed during that first week, so we were scheduled for two more return trips. We expected to finally find out which Parkinsonism it is when we went back in early November. We were discouraged to learn the tests were not conclusive enough yet to get that diagnosis. We did learn he needs to use a walker now instead of a cane because a cane is no longer able to keep him safe from falling. We also found out he has severe sleep apnea, and had to go back again the week before Thanksgiving to work on that. The doctor told us things will continue to deteriorate, and we should plan to come again in four to six months when he would likely be able to tell us which of the Parkinsonism’s it is.
Bruce has been steadily losing muscle strength, and suffers with tremors in his hands and arms that are getting increasingly more common. His eyes tear most of the time because he is no longer blinking normally, so they become dry and the tears are trying to compensate. He has other vision issues as well, and has not driven now since his fall in Sep 2015 (except one time when I had to have him drive). He continues to battle balance issues and must be very careful when he is trying to get around.
Bruce is still trying to work, but he has only managed to work a full 40 hours one week so far, this year. He misses a lot of time for doctor appointments, physical therapy, and the trips to Mayo Clinic. He also misses time when he gets too tired or weak to keep going, or when his eyes are being difficult. We are trying to find out what we need to do to file for disability and what his options are for taking early retirement.
There are many more questions than answers for us at this point. It has been frightening and discouraging to see him deteriorate so much in such a short time. What we need the most right now is your prayers. We need God’s help to give us wisdom to make the best choices and for God to give the doctors and physical therapists the wisdom to make the right diagnosis and provide the best treatment. The doctor was clear that there is no cure for Parkinsonism. The drugs and therapies that help some patients with Parkinson’s Disease do not help patients with Parkinsonism. The only thing the doctors know to do right now is to manage symptoms the best they can. The best we can do for Bruce is pray and ask God to heal him, and to help him stay as positive and engaged in life as he can. We should also help Bruce stay as active as possible, both physically and mentally.
We won’t know his expected prognosis for sure until we know which Parkinsonism it is. We just know it is progressing rapidly. A couple of the best explanations to understand what Parkinsonism is can be found here: http://www.parkinson.org/pd-library/fact-sheets/parkinsonism-vs-parkinsons-diseasehttp://www.pdf.org/pdf/fs_parkinson_plus_08.pdf
We appreciate your support, prayers, and words of hope and encouragement. Thank you for visiting.