Parkinson's and heart disease

[maggie6445]

My OH has a history of heart attacks/ disease going back .3 decades.
He has had recent issues which have meant more test to see if they are dementia or heart related.
GP is now referring to the neurologist as it could be Parkinson's. Lewy body was a possibility when dementia diagnosed
Does any one have any advice or comment about whether it's worth having investigations? Would meds be given as he has six heart meds?
I've googled and not sure if there is value to putting him through more investigations.
What might be involved?
If anyone has experience would like to hear your opinion.
Thanks

 

[Lawson58]

My OH has a history of heart attacks/ disease going back .3 decades.
He has had recent issues which have meant more test to see if they are dementia or heart related.
GP is now referring to the neurologist as it could be Parkinson's. Lewy body was a possibility when dementia diagnosed
Does any one have any advice or comment about whether it's worth having investigations? Would meds be given as he has six heart meds?
I've googled and not sure if there is value to putting him through more investigations.
What might be involved?
If anyone has experience would like to hear your opinion.
Thanks

My husband has a history of cardiac problems which includes a mitral valve repair, heart attack and a cardiac arrest, all in just over twenty years.

He was originally diagnosed with dementia while recovering from the cardiac arrest and then seven years later non diagnosed. He has had a few issues with bleeds, also hernias and prostate and takes about 14 tablets a day. He has been fitted with a defibrillator.

Whether you need further investigations would depend on a few things such as his age, how severe his condition is and what does he really want to do (if he understands).

I would have thought vascular dementia also a possibility after his history of heart attacks.

I think you need to have a chat with the consultant about what would happen if the tests reveal one of the dementias, what treatment would be available and prognosis.

Whether you go ahead with farther investigations, will depend on age, state of general health and possible outcomes. My husband decided that after his second neuropsychological assessment, he was never going to do them again.

I feel you need a lot more information before you decide.

 

[maggie6445]

My husband has a history of cardiac problems which includes a mitral valve repair, heart attack and a cardiac arrest, all in just over twenty years.

He was originally diagnosed with dementia while recovering from the cardiac arrest and then seven years later non diagnosed. He has had a few issues with bleeds, also hernias and prostate and takes about 14 tablets a day. He has been fitted with a defibrillator.

Whether you need further investigations would depend on a few things such as his age, how severe his condition is and what does he really want to do (if he understands).

I would have thought vascular dementia also a possibility after his history of heart attacks.

I think you need to have a chat with the consultant about what would happen if the tests reveal one of the dementias, what treatment would be available and prognosis.

Whether you go ahead with farther investigations, will depend on age, state of general health and possible outcomes. My husband decided that after his second neuropsychological assessment, he was never going to do them again.

I feel you need a lot more information before you decide.

Thanks. He's had five attacks ,triple by pass 25 years ago and had seven stents since 2006.

Original diagnosis Alzheimer's with possible Lewy Body as all scans showed evidence of shrinkage. Both consultant and I were surprised it wasn't vascular dementia but was told no evidence for that.

Recently mobility and falling issue and odema.
Symptoms are a lot like lewy body but there is also Alzheimer's there . On memantine since diagnosis in 2021.
Now late mid- stage.
I asked what value in referring but DR said we'd have an idea of cause of issues and may be something that can help. Didn't say what help.

He's 77 years old.

 

[Melles Belles]

@maggie6445
It is worth getting a diagnosis because some medications are very dangerous for those with Lewy Body dementia. I think it is some types antipsychotics.

 

[maggie6445]

@maggie6445
It is worth getting a diagnosis because some medications are very dangerous for those with Lewy Body dementia. I think it is some types antipsychotics.

Thankyou. I hadn't thought of that way round. He doesn't need antipsychotics at the moment but maybe in the future.

 

[Chizz]

My OH has a history of heart attacks/ disease going back .3 decades.
He has had recent issues which have meant more test to see if they are dementia or heart related.
GP is now referring to the neurologist as it could be Parkinson's. Lewy body was a possibility when dementia diagnosed
Does any one have any advice or comment about whether it's worth having investigations? Would meds be given as he has six heart meds?
I've googled and not sure if there is value to putting him through more investigations.
What might be involved?
If anyone has experience would like to hear your opinion.
Thanks

Hi @maggie6445
A friend of mine was breathless. The doctor referred him for a lung x-ray, and an echocardiogram.
The lungs, he told me were mostly OK (even though he'd been a smoker for 40+ years). However, the echocardiogram showed an enlarged heart.
He said the doctor told him that one of the symptoms - apart from breathlessness which he had - was confusion, and can be mistaken with the onset of dementia or even Parkinson's (where movement is not normal and smooth). Where a proper / usual blood flow is in some way restricted to muscle, this can affect movement, and can even causing falling which again sometimes suggests Parkinson's is starting.
There are numerous different meds for enlarged heart, usually beta blockers in some form, and some meds give side effects, including some dizziness that can seem like confusion.
Thus, special care needs to be taken with regard to the tests for possible dementia sand Parkinson's for someone who has or has had heart problems.
Best wishes.

 

[maggie6445]

Hi @maggie6445
A friend of mine was breathless. The doctor referred him for a lung x-ray, and an echocardiogram.
The lungs, he told me were mostly OK (even though he'd been a smoker for 40+ years). However, the echocardiogram showed an enlarged heart.
He said the doctor told him that one of the symptoms - apart from breathlessness which he had - was confusion, and can be mistaken with the onset of dementia or even Parkinson's (where movement is not normal and smooth). Where a proper / usual blood flow is in some way restricted to muscle, this can affect movement, and can even causing falling which again sometimes suggests Parkinson's is starting.
There are numerous different meds for enlarged heart, usually beta blockers in some form, and some meds give side effects, including some dizziness that can seem like confusion.
Thus, special care needs to be taken with regard to the tests for possible dementia sand Parkinson's for someone who has or has had heart problems.
Best wishes.

Thanks @Chizz. OH has had a chest x-ray this week and we are waiting for the 24 hr heart trace monitor. ECG was normal for him! Originally looking at heart failure for new symptoms .
OH has the dementia shuffle and head drop associated with Parkinson's . Originally diagnosed Alzheimer's / probable Lewy body from ct and DAT scans and symptoms. Hallucinations and visual perception issues.
He has a lot of symptoms but not well but could just be dementia progress. Just trying to find out by elimination .

 

[Bez O]

My OH has a history of heart attacks/ disease going back .3 decades.
He has had recent issues which have meant more test to see if they are dementia or heart related.
GP is now referring to the neurologist as it could be Parkinson's. Lewy body was a possibility when dementia diagnosed
Does any one have any advice or comment about whether it's worth having investigations? Would meds be given as he has six heart meds?
I've googled and not sure if there is value to putting him through more investigations.
What might be involved?
If anyone has experience would like to hear your opinion.
Thanks

I am caring for someone with Parkinson’s which was preceded by possible Lewy Bodies. I think it would be good for you to have a proper diagnosis. It makes it possible for you on the worst possible ‘Lewy Bodies’ days to tell them that it is their illness causing the hallucinations etc.
i don’t know how easy your husband is dealing with the Lewy Body, but the Parkinson’s can be controlled. you will also have a dedicated Community based Parkinson’s Nurse. My husband’s diagnosis involved little more than a head scan, some blood tests and physical examinations which are repeated every so often. The Parkinson’s is fairly well controlled but he has never had a diagnosis for the Lewy Bodies. His memory is appalling now and he has some challenging behavioural problems. The Parkinson’s nurse has asked our GP to refer him to the Memory Clinic. It sounds as if your GP is taking good care of your husband and I wish I’d had the same experience.

 

[maggie6445]

I am caring for someone with Parkinson’s which was preceded by possible Lewy Bodies. I think it would be good for you to have a proper diagnosis. It makes it possible for you on the worst possible ‘Lewy Bodies’ days to tell them that it is their illness causing the hallucinations etc.
i don’t know how easy your husband is dealing with the Lewy Body, but the Parkinson’s can be controlled. you will also have a dedicated Community based Parkinson’s Nurse. My husband’s diagnosis involved little more than a head scan, some blood tests and physical examinations which are repeated every so often. The Parkinson’s is fairly well controlled but he has never had a diagnosis for the Lewy Bodies. His memory is appalling now and he has some challenging behavioural problems. The Parkinson’s nurse has asked our GP to refer him to the Memory Clinic. It sounds as if your GP is taking good care of your husband and I wish I’d had the same experience.

Thank you. We will be going for the consultation but wasn't too sure if it would offer any help. . his mobility is very shuffly and hoping that walking aid or wheelchair may be in the offering. No big personality change,quite passive and compliant but definitely has the imaginary people 😂
.

 

[Bez O]

@maggie6445
It is worth getting a diagnosis because some medications are very dangerous for those with Lewy Body dementia. I think it is some types antipsychotics.

My husband was showing signs of the Lewy Bodies long before the Parkinsons diagnosis. The drugs they are given are in the Dopamine group. Since he started taking Madopar his Parkinson symptons have improved with very few shaking episodes and more stability when he is on his feet. The Lewy Body symptons are not worse and it helps to be able to tell them that their hallucinations are just a part of their illness. My husband is nearing 89 years of age and I think the treatment is helping him cope better with the problems of both the disease and age related problems.

 

[maisiecat]

Thanks @Chizz. OH has had a chest x-ray this week and we are waiting for the 24 hr heart trace monitor. ECG was normal for him! Originally looking at heart failure for new symptoms .
OH has the dementia shuffle and head drop associated with Parkinson's . Originally diagnosed Alzheimer's / probable Lewy body from ct and DAT scans and symptoms. Hallucinations and visual perception issues.
He has a lot of symptoms but not well but could just be dementia progress. Just trying to find out by elimination .

Hi @maggie6445 , my husband has late stage Parkinsons plus Parkinsons dementia not lewy body and now vascular dementia. I don't know when your husband had his dat scan but they are used to diagnose parkinsons so is it being suggested it has developed since then. From my experience it is so difficult to differentiate symptons from dementia and parkinsons. Much of the shuffling and the head drop look exactly the same. My husband also has notable vascular disease now and CT shows old arterial strokes. I know the parkinsons came first as he has had it 18years but again there seems to be a noticeable overlap.
In terms of drugs the dopamine agonists make hallucinations worse so thats an introduce with caution. Low doses of madopar may help with mobility. The trouble with Parkinsons is its utterly unique to each person so its difficult to advise.
May be worth them reviewing the CT/Dat if they are just a few years old.

 

[maggie6445]

Hi @maggie6445 , my husband has late stage Parkinsons plus Parkinsons dementia not lewy body and now vascular dementia. I don't know when your husband had his dat scan but they are used to diagnose parkinsons so is it being suggested it has developed since then. From my experience it is so difficult to differentiate symptons from dementia and parkinsons. Much of the shuffling and the head drop look exactly the same. My husband also has notable vascular disease now and CT shows old arterial strokes. I know the parkinsons came first as he has had it 18years but again there seems to be a noticeable overlap.
In terms of drugs the dopamine agonists make hallucinations worse so thats an introduce with caution. Low doses of madopar may help with mobility. The trouble with Parkinsons is its utterly unique to each person so its difficult to advise.
May be worth them reviewing the CT/Dat if they are just a few years old.

Thanks @maisiecat . The CT and DAT scans were done in April 2021. The consultant said the Lewy body was inclusive but there was some evidence of changes on the dat scan to think Lewy body with Alzheimers. He was having hallucinations and misinterpretation and restless legs / dreams at night.
He is quite stiff and and difficult to dress.
The current round of test were looking at heart failure ,given history ,thought it would be clear cut. Tests are not supporting that ,yet !!
But he's never had his heart attacks show when the ambulance comes,only on the blood tests and angiogram afterwards. In fact by pass was 12 months after attack. Surgeon couldn't believe he was still upright and working. Always has to be different!!

Now Dr wants to see if Parkinsons. He's a bit of a medical oddity methinks 😊

 

[maisiecat]

Thanks @maisiecat . The CT and DAT scans were done in April 2021. The consultant said the Lewy body was inclusive but there was some evidence of changes on the dat scan to think Lewy body with Alzheimers. He was having hallucinations and misinterpretation and restless legs / dreams at night.
He is quite stiff and and difficult to dress.
The current round of test were looking at heart failure ,given history ,thought it would be clear cut. Tests are not supporting that ,yet !!
But he's never had his heart attacks show when the ambulance comes,only on the blood tests and angiogram afterwards. In fact by pass was 12 months after attack. Surgeon couldn't believe he was still upright and working. Always has to be different!!

Now Dr wants to see if Parkinsons. He's a bit of a medical oddity methinks 😊

So is my husband,he seems to have every disease known to man. My advice would be to make sure they explain their thinking to you and the side effects of the drugs. The trouble is by the time you have got your husband to the appointments you will be utterly traumatised so its difficult to concentrate.
I think they would have to anaesthetise both of us to get us back in the hospital. Parkinsons and hospitals really don't work because the meds have to be given exactly on time and on an empty stomach. Nightmare!!
I hope you get a solution

 

[maggie6445]

So is my husband,he seems to have every disease known to man. My advice would be to make sure they explain their thinking to you and the side effects of the drugs. The trouble is by the time you have got your husband to the appointments you will be utterly traumatised so its difficult to concentrate.
I think they would have to anaesthetise both of us to get us back in the hospital. Parkinsons and hospitals really don't work because the meds have to be given exactly on time and on an empty stomach. Nightmare!!
I hope you get a solution

@maisiecat , thank you. Think my OH is going for the "everything known to man" award too
Well.. we'll see what they have to say. He's on clopidogrel for his heart and there is no way he's coming off it. Any thing they give must work with that. Three of his heart attacks have been because cardiologists have wanted to try other heart meds. Day 5 - heart attack!
A diagnosis would be interesting , I suppose, even if they can't give meds. 😘

 

[maisiecat]

@maisiecat , thank you. Think my OH is going for the "everything known to man" award too
Well.. we'll see what they have to say. He's on clopidogrel for his heart and there is no way he's coming off it. Any thing they give must work with that. Three of his heart attacks have been because cardiologists have wanted to try other heart meds. Day 5 - heart attack!
A diagnosis would be interesting , I suppose, even if they can't give meds. 😘

Well while not ill wishing you I'm glad I'm not alone. I think diagnosis is always beneficial and I think common sense says heart first as we all need that working!

 

[Chizz]

Hi,
My cousin's wife was told about 2 1/2 yrs ago that all her symptoms pointed to Parkinson's and the drs gave medication for that. However, as time went on, and she had regular appointments with drs for check ups and to rate progression, etc., the drs admitted that it didn't seem quite like "regular" Parkinson's (if there is such a thing). Then after more tests, observations, etc about 6 months ago the drs decided that she had CBD - cortico-basal degeneration - which is rare. Because it's rarer, and affects a small part of the brain it was harder to diagnose and be sure about. There are cortico-basal syndromes that are like it, just as with Parkinson's there is Parkinsonism, etc. So, in my cousin's wife's case it took 2 yrs before the drs were sure of what she was suffering from,
So, things are not always straight forward.
Thus, apart from heart problems @maisiecat and @maggie6445 it is possible that your respective doctors are not yet sure as to what exactly your respective OHs have, as the drs don't like to say one thing if they're not sure.

 

[maisiecat]

Hi,
My cousin's wife was told about 2 1/2 yrs ago that all her symptoms pointed to Parkinson's and the drs gave medication for that. However, as time went on, and she had regular appointments with drs for check ups and to rate progression, etc., the drs admitted that it didn't seem quite like "regular" Parkinson's (if there is such a thing). Then after more tests, observations, etc about 6 months ago the drs decided that she had CBD - cortico-basal degeneration - which is rare. Because it's rarer, and affects a small part of the brain it was harder to diagnose and be sure about. There are cortico-basal syndromes that are like it, just as with Parkinson's there is Parkinsonism, etc. So, in my cousin's wife's case it took 2 yrs before the drs were sure of what she was suffering from,
So, things are not always straight forward.
Thus, apart from heart problems @maisiecat and @maggie6445 it is possible that your respective doctors are not yet sure as to what exactly your respective OHs have, as the drs don't like to say one thing if they're not sure.

Hi @Chizz ,thank you for your reply but my husband was diagnosed 15 years ago.Took 3 years to get a Dat scan for him but the changes were obvious then even to a layman. Its why I was surprised that having had a Dat scan there wasn't an answer for the other lady. I don't think you should diagnose Parkinsons from symptons as its so complicated.
We belonged to Parkinson groups and none of the people had the same symptons.