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Alzheimer's and Parkinson's

stanleypj

Registered User
Dec 8, 2011
10,708
North West
Throughout the 11 or 12 years it took to arrive at a diagnosis of my wife's condition, all sorts of possibilities were examined. Among the diseases mentioned were Lewy Bodies and Parkinson's although they, like all the others that had been mentioned, were finally ruled out and we were left with the diagnosis of last resort - AD.

The tilt which my wife sometimes has - it can be to the left, the right, backwards and sometimes all of these alternating every few days with 'normal' - was observed by the GP after a fall and he thought that this and some of her hand movements might indicate that she now also had Parkinson's or some Parkinson's-like symptoms (though he didn't exactly share this thought at the time). Anyway, we've ended up with an appointment tomorrow with a doctor who specialises in Parkinson's and apparently has a very good reputation.

The little ray of hope, I suppose. is that whereas the handful of dementia drugs are useless or worse for many people (including my wife) it seems that drugs used in the case of Parkinson's are capable of alleviating some of the physical symptoms quite significantly.

I'd be interested to hear from anyone with experience in these areas, particularly in relation to a diagnosis of AD and PD or in relation to Parkinson's-like symptoms in people with AD.

I know how to find the factsheets and, of course, there's google but it's always very useful to hear direct personal experiences.

Thanks in advance.
 

nitram

Registered User
Apr 6, 2011
20,086
North Manchester
As my wife's cognitive impairment increased she developed a unilateral hand tremor which stopped if you gave her something to hold. When walking she leant forward to the extent that if not held back she would fall on her face.

She was seen by an adult movement disorders consultant specialising in Parkinson's.
After a neurological examination he decided that as the cognitive impairment preceded the movement disorders it would be unsafe to prescribe any of the medications used to control Parkinsonism. He actually said that although the tremor and gait would most likely improve there was a high risk of her turning into 'a jabbering, hallucinating, patient', she already suffered from mild hallucinations.

He liaised with the consultant psychiatrist and the medication was changed from Aricept to Memantine and Sodium Valproate.

Both the tremor and gait problems abaited but were soon overshadowed when she lost the ability to weight bear.

Some time later the diagnosis was Lewy Body Dementia - severe degree.
 
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TinaT

Registered User
Sep 27, 2006
7,095
Bolton
My husband had LBD and was prescribed Rivastigmine. LBD was also difficult to diagnose for my husband. We were lucky in that he was referred quite early to a specialist neurological department.

He had previously been given haloperidal, which is an older type drug used to dampen down obsessive behaviour and after diagnosis I found out that this was a very dangerous drug for LBD sufferers. He was then put onto other more modern drugs to help to calm him down along with the Rivastigmine.

It is a very difficult disease to control and I hope that you get a good consultant to manage the problems it causes.

xxTinaT
 

Caz60

Registered User
Jul 24, 2014
253
Lancashire
LBDementia

My husband had LBD and was prescribed Rivastigmine. LBD was also difficult to diagnose for my husband. We were lucky in that he was referred quite early to a specialist neurological department.

He had previously been given haloperidal, which is an older type drug used to dampen down obsessive behaviour and after diagnosis I found out that this was a very dangerous drug for LBD sufferers. He was then put onto other more modern drugs to help to calm him down along with the Rivastigmine.

It is a very difficult disease to control and I hope that you get a good consultant to manage the problems it causes.

xxTinaT
Hi my husband was diagnosed LBD when a very knowledgable Doctor took note of all his symptoms,which were .shaking ,or tremors,his gait he has a kind of shuffle ,slow most of the time.Hallucinations and jerks happening in the night or day .short term memory loss and severe cognitive impairment.He is now on Mementine which has calmed him a little as now..I hope this info helps you .xx
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
Thanks Tina and Caz.

The appointment was useful. I was impressed by the specialist. Prior to the meeting us he did the usual speed-read of 'the notes' of course (just the notes since the diagnosis when my wife was transferred to the care of the Adult Mental Health Team). He started by saying that the AMHT guy we see had noted that my wife has LBD (she hasn't - the diagnosis is AD). When I queried this he said he thought it best to forget about labels - a man after my own heart.:) (But I'll query this with the AMHT.)

He quickly identified that, as suspected, my wife has several Parkinsonism symptoms e.g. rigidity, 'cogwheel' unbending of arms. He thought on balance it was worth trying a very low dose (initially one 12.5/50mg tab a day) of Co-careldopa. I'd told him about my wife's extreme sensitivity towards many drugs. He said that because of the low dose and the short half-life of the drug (2-4 hours) any serious problem would be very unlikely but, obviously, we should stop taking it if there were any problems.

This dose may not produce any improvement but will show if the drug is tolerated and then the dose could be upped later. Someone once told me 'start low and start slow' is a good policy for most drugs you've not taken before.

So, I'm probably going to start tomorrow when we have a day when nothing else is planned.

We will also get a visit from the 'falls team' who might be able to suggest some exercises that could help.
 
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Grannie G

Volunteer Moderator
Apr 3, 2006
71,137
Kent
I hope the new drug proves to be effective stanley. Drugs are wonderful when they work. I wonder how long it will take for you to notice a change.
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
Thanks Sylvia. The patient info says that it could take seven days even with a 'normal' dose which the doctor told me would normally be six times higher so it will be a while, I think.

Apparently, if it works, the idea is that for the 2 to 4 hours after the dose the symptoms ease so the normal three doses just about see you through the day (not needed at night).
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
Just an update. I've continued to give my wife 1 tablet a day. No problems - it's being tolerated. I've now been given more tablets and can step up the dose to one third of the usual dose. I'm thinking I'll do so this week.

The walking has improved a little but I think this has more to do with getting back into routines after our holiday, 350 mile round trip baby-sitting and then a sickness bug. Even so it would now take us about 40 minutes to walk a mile whereas it's not long since we could do it in 28 minutes (and that had been the speed for several years). It's very tedious but I'm just thankful that we can do it (with short rest breaks) without too much anxiety about the possibility of a fall.
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
Another update. My wife has been on two tabs a day for a while (apart from the odd day when I've missed the second dose because of our schedule) with no apparent ill-effects that I could see.

However, today our care-worker who has had a week off' came for her first of two 3 hour stints this week and pointed out that my wife's face looked swollen. When she said it I could see what she meant. I looked at the patient info again and this is mentioned amongst the very first side-effects.

Last week I really concentrated on the walking and there was a marked improvement which I thought might be down to the co-caroldopa. But so far this week walking has been laboured and I've not felt the confidence, which I felt last week, that she would not 'topple'.

Bear in mind that even two tabs a day is equivalent to only a third of the usual dose. It would seem unlikely that such a dose could have any effect, beneficial or otherwise, wouldn't it?

I'm not quite sure where to go from here.

Any ideas? I'd be particularly interested to hear from anyone with experience of the drug.

Thanks
 

Leolady56

Registered User
Aug 9, 2014
44
South Africa
Throughout the 11 or 12 years it took to arrive at a diagnosis of my wife's condition, all sorts of possibilities were examined. Among the diseases mentioned were Lewy Bodies and Parkinson's although they, like all the others that had been mentioned, were finally ruled out and we were left with the diagnosis of last resort - AD.

The tilt which my wife sometimes has - it can be to the left, the right, backwards and sometimes all of these alternating every few days with 'normal' - was observed by the GP after a fall and he thought that this and some of her hand movements might indicate that she now also had Parkinson's or some Parkinson's-like symptoms (though he didn't exactly share this thought at the time). Anyway, we've ended up with an appointment tomorrow with a doctor who specialises in Parkinson's and apparently has a very good reputation.

The little ray of hope, I suppose. is that whereas the handful of dementia drugs are useless or worse for many people (including my wife) it seems that drugs used in the case of Parkinson's are capable of alleviating some of the physical symptoms quite significantly.

I'd be interested to hear from anyone with experience in these areas, particularly in relation to a diagnosis of AD and PD or in relation to Parkinson's-like symptoms in people with AD.

I know how to find the factsheets and, of course, there's google but it's always very useful to hear direct personal experiences.

Thanks in advance.
My now 93 year old Mom already showed signs of Parkinsons when she was in her twenties. It never stopped her from living a practically normal life but the older she became - the worse the Parkinsons symptoms became. She was finally assessed by a specialist when she was in her 80's - hoping that it could stop the severe shaking in her head, arms/hands and trunk area. Over a period of about 4 years my mother was literally chopped and changed from one medication to another and had she not had AD today - she would have told you that the side-effects of ALL the various anti-Parkinsons meds they tried her on - not one of them brought on enough of an improvement in order to remain on the Parkinsons medications. When she was eventually seen by Geriatric Specialist, I asked him - if my mother were his mother - would he have continued her on the medications and his answer was an instant, non hesitant "NO."
Quite honestly the side-effects of this class of meds is SO long - I think that if you have a Medication Index list book which all doctors and pharmacists have - you will find few medications with AS MANY side-effects which are listed - something I only found out once we had spoken to the Geriatric Specialist. I suppose you *might* find folks who will say that they have found some of the meds to have been (somewhat!) helpful but in my mothers case - the awful side-effects were just not worth it. Not remotely so. But let the doctor guide you and then try to educate yourself as much as you can about this particular class of meds and then decide whether it will be worth your wife's health and well being to try out the prescribed meds.
Best of luck....I do still have a diary somewhere wherein I wrote which med was prescribed when and for how long mom took that particular med before she was changed to a different one.... if you think it would find it helpful - I am quite happy to look for the diary and to tell you just what the names of the meds were and what the side-effects were.....
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
Many thanks Leolady. It's always useful to hear from someone with direct experience.

And I'd really like to hear about any experiences your mum had with Sinemet/Co-caroldopa. The patient info leaflet does list a lot of side-effects (including hallucinations which we have some pats experience of) but the three leaflets for the meds that I take are also pretty lengthy. I'm not interested in other Parkinson's drugs at the moment. The one she's taking now is worry enough. I still haven't raised the dose to 3 a day (half the normal daily dose).

Thanks again.
 

withy

Registered User
Feb 23, 2013
95
Lancashire
Another update. My wife has been on two tabs a day for a while (apart from the odd day when I've missed the second dose because of our schedule) with no apparent ill-effects that I could see.

However, today our care-worker who has had a week off' came for her first of two 3 hour stints this week and pointed out that my wife's face looked swollen. When she said it I could see what she meant. I looked at the patient info again and this is mentioned amongst the very first side-effects.

Last week I really concentrated on the walking and there was a marked improvement which I thought might be down to the co-caroldopa. But so far this week walking has been laboured and I've not felt the confidence, which I felt last week, that she would not 'topple'.

Bear in mind that even two tabs a day is equivalent to only a third of the usual dose. It would seem unlikely that such a dose could have any effect, beneficial or otherwise, wouldn't it?

I'm not quite sure where to go from here.

Any ideas? I'd be particularly interested to hear from anyone with experience of the drug.

Thanks
Hi, my husband has been on Sinemet/co-careldopa for over 2 years now. He started on that low dose 3 times a day, which over the 2 years has been slowly increased to 25mg/100mg, and he now takes this 4 times a day. This controls his shaking. This March the consultant put him on a Rotigotine patch,starting at 2mg and now up to 4mg. This has improved his movement no end. Every other drug he tried caused problems. Hope the Sinemet works for your wife, it is supposed to be one of the better ones.
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
Many thanks withy. Yes the doc did say that we had the best chance with sinemet. He ruled out patches as I'd mentioned my wife's poor reaction to some meds and, with a patch, apparently, it's not as simple as just removing the patch if there's a bad reaction because some of the med stays on the skin.

I'm really glad that they seem to have found things that make a real difference for your husband.
 

Leolady56

Registered User
Aug 9, 2014
44
South Africa
Many thanks Leolady. It's always useful to hear from someone with direct experience.

And I'd really like to hear about any experiences your mum had with Sinemet/Co-caroldopa. The patient info leaflet does list a lot of side-effects (including hallucinations which we have some pats experience of) but the three leaflets for the meds that I take are also pretty lengthy. I'm not interested in other Parkinson's drugs at the moment. The one she's taking now is worry enough. I still haven't raised the dose to 3 a day (half the normal daily dose).

Thanks again.
Stanley, from what I can see, Mom was on Sinemet for close on 5 months. Mom has had perfect blood pressure her entire life but once she was on the Sinemet her B/P tests started to show that her blood pressure was way too low. She was gradually weaned off the Sinemet but still her BP remains on the low side. While on the S - they thought it would be wise to place a pace maker but the surgeon was against it as he did not think that Mom would make it through the anaesthesia.
Mom also developed a severe dry mouth, muscle cramps which would keep her tossing and turning at night, a LOT of burping and her hair was falling out in clumps.
Since coming off the Sinemet, all those side-effects are gone now, other than her BP which is still on the low side.... I suppose that everyone reacts differently to medications and perhaps your wife will not show any of the above symptoms but perhaps it's worth keeping an eye out for them......
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
I'm very grateful Leolady. My wife has always had low blood pressure so that is certainly one thing to watch. I don't think any of the other things you mention are problems but I will now be keeping a close eye on them.

Thanks again for taking the trouble.
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
We're off to a follow-up appointment this p.m. My wife has now been on 3 x daily dose of 12.5mg/50mg for a few weeks. No bad effects I have noticed except perhaps that her 'conversations' (auditory hallucinations) are sometimes slightly more animated than they've been for a while. Possible improvements are that she is slightly less rigid e.g. when I'm helping her off the bed and I think she's a little less hesitant going up the stairs.

A trainee doctor from the Adult Mental Health Team has been out on routine visit. I asked her about the mention of a LBD diagnosis and she confirmed that the notes, which she'd read, only mention AD.
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
I meant to keep updating but you know how it is.......

Brief catch-up: Now up to three-quarters of a normal daily dose. Tried going a bit further but upping the first dose of the day caused horrible vomiting. Saw the Parkinson's doc a few days after. He said it probably was the Sinemet and that anti-emetics might help. I explained that because of Sue's past history, I was a bit wary about this and he was quite happy for me to continue with three-quarters for a while though he said that, in time, the dose would have to be raised to get some benefit and we might need the anti-emetic then,

He also told us he was retiring and wouldn't be seeing us again. I was disappointed about this - he's good. He said he would refer us to the local 'Day Hospital' where a multi-disciplinary team assesses and assists people with PD/Parkinsonisma.

We went there on Thursday. There was quite a thorough assessment, though some repetition, and we had a conversation with the doc who suggested that another way to deal with the drug side-effect problem was to keep to the same individual dose but take it 4 times a day instead of 3, thereby avoiding larger individual doses. We'll try this.

I was a bit disappointed by the physio stuff. They gave us a handout which has some useful-looking ideas but some which would probably be beyond someone with dementia. I looked online for exercises and this looks good, though again some things would not be possible.

Again, I'm interested in hearing about anyone's direct experience, especially regarding exercise/physio.