Help, please! Unidentified disorder causing extremely rapid dementia.

Follow
Share

Hello caregivers. This is my first interaction on this forum, so please be patient with me. This particular question is not about my parents (for whom I am the basic caregiver), but about my father's best friend. This gentleman is only 68 and he has been diagnosed with Lewy Body Dementia, because the doctors have run out of ideas. I know many people on this forum deal on a daily basis with many, many illnesses related to dementia, so I am praying for a new thought on this situation. Here goes: The gentleman in question was in our area in June and came to visit my Dad as he always does when he comes to Pennsylvania from Florida. At that time, he seemed only milder more confused than normal, and his wife had indicated that the doctors believed he was having a bad reaction to prescribed prednisone. A few weeks earlier he had had a car accident (minor, no injuries to himself, no one else involved). When he regained conciousness in the car, however, he couldn't remember where he was or how to get home. He walked to a gas station and was sent to a hospital. That seemed to be the beginning. Since we saw him in June (he was still driving, walking, conversing normally at that time), he has spent two months in hospitals, first one in Sarasota and next at the Mayo Clinic in Florida. He has become a shell of himself. He will listen when you speak, but does not respond. His face has become expressionless, The dementia is so bad that his wife has had to arrange for in-home care. The doctors, having run out of options, declared that he has Lewy Body Dementia. My question to anyone out there is: Does this seem logical to you, and/or can you think of ANYTHING else it could be? It's so sad. This gentleman is my Dad's best friend and at one time was my boss and friend as well. My Dad has had Parkinson's for four years now (progressing without much aid from drug therapy), and still this man is far, far worse in just three months than my Dad is in four years,. We're grasping for straws here. The diagnosis just seems so unlikely, and the rapidity with which this illness has progressed is nothing short of frightening. Any thoughts on this are welcome. Thank you in advance.

This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
16

Comments

Show:
Hiya, Would always consider steroids - prednisone etc. Some people super sensitive and can cause temporary dementia, depression and psychosis. My 75 year old mother had high dose initially for temporal arteritis and has had issues with all of the above e.g. very slow/non-existent speech, slow walking, extreme confusion, changed voice, high levels of agitation, suicidal tendencies. Has taken 10 months to go through gradual taper (still on 1mg per day) and still experiencing memory issues but is very, very gradually starting to get better e.g. she's just 'remembered' how to knit. Think MRI scan should pick up if real dementia versus steriod induced dementia but don't underestimate the steriod factor. Reckon it'll be another 4-6 months to see what further improvements could happen BUT there is a lot of literature on reversible & temporary steroid induced dementia.
(1)
Report

Hi, I was interested in you mentioning steroids. I came across your post because I am looking into whether steroids prescribed for Rheumatoid arthritis caused my Dad's condition - he started taking them in 2009 and his speech started deteriorating shortly after. He was 67. He also started having difficulty in complex cognitive tasks. He was diagnosed with FTD in 2012 It's all been downhill since then, he's still on small doses of prednisone and his methotrexate injections. Behaviourally he is still the same, except when people try to stop him escaping from the home or try to shower him. Hard to find more info on this although there are plenty of articles online. I want someone to tell me how I can find out for sure, or if it's just too late to reverse any damage anyway. Good luck to you and your friend and thanks for your post.
(0)
Report

Wow is right! Great news!!!! And good info to know. Thanks for reporting back!!!
(0)
Report

WHAT wonderful news!!! Thank you for sharing. This is an excellent lesson.
(1)
Report

Wow! Thank you for that update. And I am so very, very glad for your friend's recovery.
(1)
Report

Update: For everyone nice enough to comment on my original post--Thank you! I would just like to let everyone know that my Dad's friend was finally diagnosed at Pittsburgh's Montifiore Hospital with Acute Prednisone Toxicity. I have not yet gotten the full details of treatment, but I do know that this gentleman spent three weeks in the Hospital and then showed up at my father's home fully recovered! He drove himself there, had a great time speaking eloquently with my father, and had no memory problems remaining. Sometimes, I guess there really is still hope! And yes, everyone, always question the doctors' diagnoses--even the Mayo Clinic. Apparently, they do sometimes "grasp at straws" and diagnose a condition simply because they have run out of viable alternatives. If you feel a diagnosis is just not logical, even after extensive research and testing, question it. Never give up! Have a great new year everyone, and God Bless!
(4)
Report

Norm, thank you for your response. I have been doing a lot of research, not only on LBD but also on the other illnesses mentioned above. Unfortunately, the most likely scenario (if indeed the doctors have overlooked something and it is not LBD) is Creutzfeld-Jakob (sp?) disease. Considering what I've learned about that illness, I am now hoping that the doctors are right in diagnosing LBD. Both diseases are awful, but CJD is usually fatal in far less time. The gentelman in question has not yet had a PET scan or a datScan (actually I have never heard of that. Again, I'll have to do research--I'm learning tons on this site.) His family is so tired of him being poked and prodded that I think they've decided to accept the LBD diagnosis and to test no further.

I'm so sorry, Norm, that your wife has been stricken with such a horrible illness at such a young age. While this, I am sure, is difficult for her, I'm just as certain that you are suffering your own silent hell. God bless you and give you patience and strength throughout this ordeal. Take care.
(1)
Report

After almost 2 years my wife who is 63 was recently diagnosed with Lewy Body Dementia (LBD) by John Hopkins after several tests/scans, MRI, EEG, PET and lastly a datScan which provided a 98% likelihood. It's likely the underlying disease was there put greatly accelerated by the stress of the car accident and ensuing hospitalization. My wife took a terrible downslide after being hospitalized for hyponatremia. Before that she was suffering from depression. Reading up on LBD, visits to the ER and hospitalizations play a significant part in rapid decline. It's a terrible disease and my heart goes out to you and his family
(3)
Report

Thank you all so much for your thoughts and insights. I really did not expect so many responses. The members on this site are truly wonderful. First, Noleslover, I'm not sure of a complete list of meds, but I do not believe he has ever taken a statin drug. However, this did all start with the introduction of Prednisone into his system. I don't see a connection, but apparently some of the doctors believed the Prednisone pushed his symptoms to the forefront. Fayday, thank you for mentioning Binswanger's. I have never heard of that, but I will be going to the site you listed as soon as I finish this comment. Ramblinrosey, I had forgotten about Normal Pressure Hydrocephalus. Thank you for stoking my memory. When doctors were unsure of my father's Parkinson's diagnosis, I looked into that as an alternative. I must go back and read up on this illness again. You mentioned, however, that they check spinal fluid in order to verify this diagnosis. I do know that this gentleman (according to his wife) had three Spinal Taps in the past two months. While I don't know the details, I would have thought that they would have checked for that, but oversights do happen. Lillian41, they did three MRIs also, and found no indication of stroke (actually, they found nothing not in keeping with his age). The passing-out incident was the day they began hospitalization and testing on him. I suppose since they believe he has Lewy Body Dimentia, that they are attributing his passing out to that. I really don't know. I haven't gotten to get into the individual particulars of this case, because they only got back to PA last week, and his wife is reluctant to talk when he is around. Vstephans, if there is no cure for Cruetzfeld-Jakob Disease, I am hoping and praying that's not what this is, but I will go to the Web and do some research on it as well. I was wondering about Wilson's disease, also. The doctors did check him for heavy metals, but I don't think copper is considered a heavy metal. So that may still be a possiblity. Thats the problem with this diagnosis. He has only been sick for maybe two months, and he has progressed soooo rapidly that he is nearly vegetative. That is the only reason, Jeannegibbs, that I say that the doctor's had run out of ideas. According to this gentlemen's wife, the doctor's also could not understand why this is progressing so quickly, but they nonetheless decided on Lewy Body Dementia. As far as his trip to the Mayo clinic--I know they are wonderful, but I don't know if outposts such as the one in Florida are up to the standards of the main hospital in Minnesota. It's just so sad, because he was so alive and viable just a few months ago, and now...

Again, thank you all for your help. I am going to go to the Web now and start researching some of the things mentioned here. Take care everyone, and God bless.
(3)
Report

jrectenwald, I don't believe that doctors settled on Lewy Body Dementia because they ran out of other options. Especially at the Mayo Clinic, where they participate in research on the cutting edge for that particular disease I'm inclined to assume that your friend had the available tests and was given this diagnosis because it best fit the evidence, not because they simply eliminated other options.

I belong to a local support group of caregivers of persons with Lewy Body Dementia. One person's loved one has had LDB for 12 years. My husband is in his 10th year. Another person's loved one went rapidly through all the symptoms and died in less than two years. The rate of progression is all over the map. You can read about "averages" and "typical progression" but each case is unique. Your friend and your father could have the same basic brain pathology ("Lewy bodies") and have radically different progressions.

Currently the only way to confirm a diagnosis is post-mortem examination of the brain. If your friend signs up to donate his brain to a study such as the one the Mayo conducts (as my husband has done) then his family will have a clearer picture of what he suffered from, and researchers will have more evidence on which to base conclusions and make better diagnosis in future patients. But while he is alive, complete confidence in a diagnosis is elusive. One of the goals of research is enable early and accurate diagnosis. Unfortunately that goal has not been reached yet. But if your friend has been to the dementia unit at Mayo he has been to one of the best places for an accurate diagnosis. Perfect? 100% reliable? No, the state of the art is not there yet.

I am so sorry for your friend and his family.
(7)
Report

This discussion has been closed for comment. Start a New Discussion.
Related
Questions