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What is the Process of Getting a Diagnosis?
My husband has exhibited signs of something for 10 years. He is a once confident man now unable to make decisions, cannot handle any stress, and displays a total lack of confidence to do things he never would have thought twice about. He has REM sleep disorder (since 2015). He has stiffness. He walks like an old man--he is 59. He has trouble finding words. His speech has become quiet. He retired from work two years ago because he simply couldn't handle the stress, and now works a few days a week at a golf course (which he loves). His father was 62 when he died from complications of Pick's disease, which was horrible to witness and greatly affected my husband. He has been in denial for years and has left me to "stew" with what I witness (causing me major frustration and anger). I tend to face things head on, but this is not happening to me, so there hasn't been much I can do other than be frustrated that we could be doing SOMETHING to slow down progression. But now, he has finally admitted to his GP that he has all the symptoms of Parkinson's, which in a way has lifted a burden from me (although I can't even imagine what we are facing, but we will face it together). We have an appointment with a certified nurse practitioner who specializes in Parkinson's and movement disorders. Does this type of practitioner actually diagnose or are there other tests that are completed before a diagnosis? Please share what the process is for getting a diagnosis and what we can expect. I'd like to be as prepared as possible and of course, we are worried. I will need to be his rock. Thank you in advance.
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I think you are in the pipeline for getting a real diagnosis. The NP is just the beginning. Please insist,at some point, that you want see an MD Neurologist with experience with geriatric conditions. Without a clear diagnosis, there is way to get a real handle on what is going on, why it is going on, and to understand what you and your husbands options are. Good luck on your journey and know that people have you in their thoughts.
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7 ReactionsYou are singing my song. I knew something was going on but chalked it up to getting older (65). It wasn't until he retired and I was with him 24/7 that I suspected it was more than age. They did testing and declared Executive Functioning Disorder. I read up on it he continued to be tested for 2 years with the same diagnosis. It wasn't until I insisted that he was referred to a neurologist. Parkinsonism, Dementia with Lewy Bodies and Sundowning. The days aren't great but the evenings/nights are worse because of the sundowning. Get your husband to a neurologist who specializes in those diseases and get a diagnosis ASAP.
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10 ReactionsI agree, it sounds like you're describing our diagnosis experience. After ten years of doctors and neurologists, we finally went to a Movement Disorder location and saw a neurologist who diagnosed him within 15 minutes with knowledge of symptoms, then confirmed it with genetic testing, and we were finally able to successfully start treating some of the symptoms. I hope you have a good experience there!
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6 ReactionsThis certainly could be fronto-temporal dementia but he needs diagnosis from an experienced neurologist or gerontologist.
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1 ReactionWe didn't use a certified nurse practitioner when we started first with the primary doctor, then directly to the neurologist, who tested my husband immediately: the office visit test, the MRI, Pet Scans, etc., then the results: Mild Cognitive Impairment. My husband went on Lequembe infusions shortly thereafter. Consider going to Mayo Clinic (not sure where you live) to get him seen by a neurologist and core team there; it's certainly worth the visit and acceleration, so you can possibly treat early whatever is going on. Fifty-nine is young; but this disease, takes on any age. Best, Karla
Thanks for the comments and suggestions, everyone. The NP we saw was excellent and does have extensive knowledge of this disease and others. She checked him over very well and diagnosed early stage Parkinson's, which tracks. She prescribed Sinemet. It's pretty low dosage to start out and see what helps, but apparently can be increased quite a bit over time (or there are other options). She told him exercise will be key, which is perfect for him. We are in SE Michigan. In Farmington Hills MI, there is the Kirk Gibson Center for Parkinson's Wellness, which is an enormous center exclusively for Parkinson's patients (and a couple other similar diseases). It's free to diagnosed patients. Michigan Native Kirk Gibson is a Detroit Tiger legend (World Series in 1984), and he has Parkinson's. My husband is a sports fanatic, so this center specifically interests him. It's about a 45 minute drive away, but we also have excellent PT facilities all around us. I feel relief that we can actually acknowledge this and plan for it instead of him being in denial, yet of course, I'm scared of what we are facing. Because he is only 59, he has to have his own insurance (he retired two years ago due to the stress--he just can't handle stress anymore). I guess as long as he stays with the same plan, he's ok (?) but if he tries to change insurance, he probably won't be able to get any until he's old enough for Medicare! (I am older than him--I am now on Medicare). I don't know what to expect with health insurance for someone diagnosed with this--do they give you a hard time for all the PT, etc? Thanks again for the commentary.