Up from the grave he arose

Wow! What an experience I’ve just had. Thing only thing I barely remember last Sunday was that the Steelers won the Super Bowl. The last couple of days had me wondering. I do think it’s the worst I have ever been with the LBD.

I’ve underlined the worst symptoms I had in the following review of LBD which I posted last week.

Lewy Body Dementia Symptoms as explained by the Lewy Body Dementia Association

Dementia is a process whereby the person becomes progressively confused. The earliest signs are usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making.

Other causes of dementia should be ruled out first, such as alcoholism, overuse of medication, thyroid or metabolic problems. Strokes can also cause dementia. If these reasons are ruled out then the person is said to have a degenerative dementia. Lewy Body Dementia is second only to Alzheimer’s disease as the most common form of dementia.

Fluctuations in cognition will be noticeable to those who are close to the person with LBD, such as their partner. At times the person will be alert and then suddenly have acute episodes of confusion. These may last hours or days. Because of these fluctuations, it is not uncommon for it to be thought that the person is “faking”. This fluctuation is not related to the well-known “sundowning” of Alzheimer’s. In other words, there is no specific time of day when confusion can be seen to occur.

Hallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.

Parkinsonism or Parkinson’s Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson’s mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.

REM Sleep Behavior Disorder (RBD) is often noted in persons with Lewy Body Dementia. During periods of REM sleep, the person will move, gesture and/or speak. There may be more pronounced confusion between the dream and waking reality when the person awakens. RBD may actually be the earliest symptom of LBD in some patients, and is now considered a significant risk factor for developing LBD. (One recent study found that nearly two-thirds of patients diagnosed with RBD developed degenerative brain diseases, including Lewy body dementia, Parkinson’s disease, and multiple system atrophy, after an average of 11 years of receiving an RBD diagnosis. All three diseases are called synucleinopathies, due to the presence of a mis-folded protein in the brain called alpha-synuclein.)

Sensitivity to neuroleptic (anti-psychotic) drugs is another significant symptom that may occur. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia. For this reason, it is very important that the proper diagnosis is made and that healthcare providers are educated about the disease.

Other Symptoms

Visuospatial difficulties, including depth perception, object orientation, directional sense and illusions may occur.

Autonomic dysfunction, including blood pressure fluctuations (e.g. postural/orthostatic hypotension) heart rate variability (HRV), sexual disturbances/impotence, constipation, urinary problems, hyperhidrosis (excessive sweating), decreased sweating/heat intolerance, syncope (fainting), dry eyes/mouth, and difficulty swallowing which may lead to aspiration pneumonia.

Other psychiatric disturbances may include systematized delusions, aggression and depression. The onset of aggression in LBD may have a variety of causes, including infections (e.g., UTI), medications, misinterpretation of the environment or personal interactions, and the natural progression of the disease.

I’m coming back to myself once again–

Now to start catching up with 1009 emails. I’ll just do it little by little.



6 Responses

  1. I’m glad you’re feeling better – it sounds like you’ve been through a really rough and scary experience. You’re doing a good job of helping us understand what it’s like from the patient’s perspective.

    One thing I’ve discovered about emails – the trouble with getting behind is that more keep flowing in. So unless you can process (a lot) more than usual you can reach a point where you can simply never catch up. On the couple of occasions that’s happened to me I’ve bitten the bullet and just dumped the backlog and – guess what – nothing bad happened! I never missed them as new ones kept coming.

    So my advice: don’t feel you have to wade though the backlog, just put them aside enjoy the new ones – they’ll be more up-to-date and more relevant anyway.

  2. Dear David,
    Glad to hear you are doing better – hope you stay that way, and continue the fight. Your posts are always so wonderful.
    Sending many prayers,

  3. I worry about you and pray for you and your family all the time.

    My father has got Parkinson’s. It seems to be a little better right now. They are coming out with new medications for that.

    How smart of you to stay active and to make this blog. This may help.

    Hey you talk about days being blocked out. Well I do not remember every day of my life either. The doctors tell me I do not have dementia.

  4. Hello David,

    My heart turned over when I read what a rough trot you have had. So pleased you are feeling better. I agree with ‘Elderly lady in training’ about the emails.

    sending lots of best wishes

  5. Dear David, our beloved friend,

    Could the urinary problem have caused your bad weekend? As well as constipation? Constipation causes my Don problems.

    You are very observant to have known what was happening and to be able to assess all of it. That is the Doctor in you showing up in this time of need for your record keeping.

    We really appreciate your observations. I would like to know more about the confusion state, if you are able to elaborate on it a little more.

    Send Pam our regards. It always creates anxiety in the caregiver.

    You really went through a humdinger. I hope those humdingers stay away for a while.

    Love a lot, and be sure to smile when you can, does a body good,

  6. Hi David,

    I was just looking for the title of the hymn with those lyrics “up from the grave he arose” and ran across your blog. I was so glad to find it at sunrise on Easter morning.

    My father died of Lewy Body disease a few years ago…and so many of these symptoms are things I’ve struggled with in different ways myself that your explanation was able to help me understand what he must have suffered. It’s such a quick ruthless disease.

    I wish you and your family all the memory and strength you can muster as you navigate this uneven path of dissolution.

    I’ll sing a little for you this morning, too.

    “Be not afraid, I go before you always.”

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