Alzheimer's Disease and Parkinson's Disease

[stanleypj]

Since I joined TP, I've noticed that it is not uncommon to see posts that someone has both the diseases. This interests me because my wife Sue was diagnosed as having PD quite some time after being diagonsed with AD. The doctor who first suggested that she had PD remarked on her displaying the 'gait' typical of PD sufferers.

I'm not sure whether this information has really helped Sue. She is on Sinemet and my recollection is that she was prescribed this before the suggestion of PD was mentioned - but I could be wrong. There's so much to remember!

And it's often hard to say which particular symptom is caused by which disease. For example, when she is in bed her right leg is often drawn up so that the foot is actually under her bottom. Her arms and hands may be clamped tightly on her upper chest. Which disease, I wonder, is responsible?

Her limbs always tend towards stiffness and rigidity but sometimes they are much more easily relaxed by gentle stroking than at other times. We don't know why.

She is often very tired. This could be the Sinement and/or other meds. The Nursing staff and GP are wondering whether to try reducing the meds and maybe stopping them completely at some point.

I'd be very interested to hear from people with any experience of this dual diagnosis and/or the things I've mentioned.

 

[nitram]

My understanding is that the distinction between PD and LBD is which part of the brain the Lewy bodies predominantly form.

In the early 1900s, while researching Parkinson's disease, the scientist Friederich H. Lewy discovered abnormal protein deposits that disrupt the brain's normal functioning. These Lewy body proteins are found in an area of the brain stem where they deplete the neurotransmitter dopamine, causing Parkinsonian symptoms. In Lewy body dementia, these abnormal proteins are diffused throughout other areas of the brain, including the cerebral cortex. The brain chemical acetylcholine is depleted, causing disruption of perception, thinking and behavior. Lewy body dementia exists either in pure form, or in conjunction with other brain changes, including those typically seen in Alzheimer's disease and Parkinson's disease.

https://www.lbda.org/category/3437/what-is-lbd.htm


In my late wife's case a decision of LBD was made.

The consultant psychiatrist suggested carbidopa or levodopa or the combination medication sinemet.

The adult movement disorders consultant disagreed saying that he was not convinced that it was PD and if it was LBD those drugs could have catastrophic results - extreme auditory and visual hallucinations.

Although the results of two CT scans, an MRI, and a PET scan were available the decision was more based on general observation, gait, and tests such as the arm cog wheel test and other simple neurological tests.
I was deeply involved in all the deliberation and to some extent the final decision, and future medication, was mine.

My wife suffered from various contractures starting with her wrist and ending up with her in the fetal position. I believe contractures are common in all denentias and also PD.

As https://www.medicines.org.uk/emc/medicine/9647 does not have any warning about stopping sinemet and in consultation with clinicians I would be tempted to to try a reduction.

 

[stanleypj]

Many thanks nitram. Sue also had all the scans. I don't think any of the professionals who have dealt with Sue ever mentioned LBD.

 

[nitram]

Ultimately in an informed situation symptoms are treated with the best intent.

Attaching a name to a syndrome is secondary.

 

[Kevinl]

Someone asked this question a while ago so I asked the care home manager what she thought. She told me only one of the 62 residents in the 2 units she manages has Parkinson's. It's EMI nursing and all the residents have some form of dementia.
I know 2 people with Parkinson's, both are older than my wife (one by 20 years) and neither of them show any signs of memory issues.
One friend with Parkinson's does like to have her legs pulled up under her when she's sat on a sofa rather than on the floor, I had noticed this but never connected it with her illness before, possibly it is.
K

 

[marionq]

My mother had Parkinson's and I sometimes wonder if my husbands rigidity is an early sign of it but it is hard to Know if this is another aspect of dementia. Is there a blood test for it?

 

[Lorna44]

Parkinson's with dementia

My mum was diagnosed with Parkinson's 10 years ago, then after a period of 5 years dementia reared its head. I was told that it was a common consequence of Parkinson's. She's now in a nursing home x

 

[Izzy]

My friend's husband was first diagnosed with Alzheimers, then Vascular Dementia, then Parkinson's. I think the biggest change was in his gait and that's what alerted them to the Parkinson's. It was less that 5 years from his first diagnosis until he died.

 

[stanleypj]

Many thanks all.

I tend to agree with nitram: attaching a name to a syndrome is secondary.

When we saw a new consultant shortly after it was suggested Sue had PD, he asked how long she had had PD and when I replied that we didn't know for sure that she had it, he replied: 'What's in a name?'.

 

[nitram]

Parkinsons V Parkinsonism

Have a read through https://www.parkinsons.org.uk/information-and-support/types-parkinsons

 

[stanleypj]

Many thanks nitram. I was aware of the use of the term 'Parkinsonism' and this had also been applied to Sue's symptoms.
It does sometimes seem a case of 'you pays your money and you takes your choice when these symptoms are 'diagnosed'.

 

[BeardyD]

Many thanks nitram. I was aware of the use of the term 'Parkinsonism' and this had also been applied to Sue's symptoms.
It does sometimes seem a case of 'you pays your money and you takes your choice when these symptoms are 'diagnosed'.

My wife was diagnosed with "let's call it Alzheimer's" 4 years ago. She is due to see the neurological consultant to confirm a PD diagnosis as well. The GP said it was possible to have both conditions concurrently rather than LBD or PD dementia, but time will tell. She had gait problems since the start but these were put down to arthritis.

Her key PD symptoms are:

Urinary incontinence from the start.
Tremors.
Slow movement including feet freezing to the floor causing her to fall forward.
Unable to turn over in bed even though her fitness trainer says how strong her upper body is.
​

Memory loss is worse than would be expected at this stage with LBD or PD dementia (so I am told). But everyone is different so we shall see.

I feel an accurate diagnosis is important as this affects my expectations of what she can do. Previously I was getting her to walk as much as possible to recover from a knee replacement. Now I know that her walking problems are caused by PD I am less reluctant to get the wheelchair out. Similarly her fitness trainer can tailor her exercises.

WHINGE: Despite knowing all the symptoms the Memory Clinic never mentioned PD.

 

[Kjn]

Mil was diagnosed with 'possible /probable ' Parkinson's last yr off the back of a slight hand tremor. No dementia was found on the scan but I have my suspicions .
She seems to have no other signs and attends a group where more than half have no symptoms either but a few do have dementia.
A resident in dads home has PD and vascular which was diagnosed 2003 , he is still mobile although very prone to falls ..unsure if PD or the vascular though.
I know very little about PD and will look up 'gait' changes.

 

[jugglingmum]

A friend's mother was diagnosed with Parkinson's initially - she clearly had a very strong tremor and carrying drinks had become an issue, and there were walking issues. However, I did notice at this time her conversation seemed odd occasionally (not memory issues)

Sometime after this 2 or 3 years at most, there was a dementia diagnosis as well. I understand the family were told it was dementia linked to the parkinson's, but maybe reading the above it was LBD.

I only saw her when she came to the cycling cafe and she stopped coming not that long after the parkinson's diagnosis, and some comment about behaviour changes was made at the time.

 

[Lorna44]

Parkinsons

I was told by mum's Parkinson's neurologist consultant that Parkinson's Dementia & LBD is practically the same. It's just what comes first..... Parkinson's then dementia is just Parkinson's with dementia, dementia with them parkinson traits is LBD.... x