New forum member

Hi all

I have been browsing the posts on this forum in the recent week and found all your comments and experiences really instructive so decided to register. Going through a bit of a crisis right now. My husband (70) was diagnosed 7 years ago and had until last year responded well to Ropinirole, supplemented by Sinemet Plus. He started to experience intermittent hallucinations, delusions and confusion/misidentifications last summer/autumn (when on 24mg Requip XL). He was weaned off the Ropinirole in small, slow steps. Unfortunately throughout that process the hallucinations got worse over a couple of weeks here and there and took on a more paranoid flavour for a time. To cut a long (agonising) story short, he has now been off it for about 1 month. Unsurprisingly his mobility crashed quite badly and he is unable to walk any distance unaided. He has not yet benefited greatly from physio. The Sinemet Plus was increased very slightly to help with this. He still has very mild and only very occasional hallucinations but continues to misidentify me/daughter for example. He is often confused about where he is, what he is supposed to be doing, what day of the week it is etc. Since the Sinemet increase he has also been going into trance-like episodes 3 times a day when he tends to go to sleep for about 1 hour or more. He often talks as though he is still in work (retired 2 years ago)and frequently tells me that 'he has to go now, thanks for lunch/dinner'. He can't seem to focus on anything (paperwork, TV news, newspapers, books) which is odd because he was a news junkie and devoured loads of books, academic papers up to about 10 months ago. His drooling is very bad and although he has good swallowing capacity doesn't appear to have the strength to cope with the flow. He's lost a lot of weight in recent weeks and is simply not the man I knew anymore, lacking energy and motivation for anything though we often talk of going out, doing this and that just never seem to get there. He often gets confused about where the bathroom is and how to approach the toilet/shower, which rails to grab hold of to assist him. Yesterday he couldn't remember how to get out of a chair. Several days ago he had temporarily forgotten how to climb the stairs. He often just sits and stares, trying to work things out, unable to communicate and is irritable at times. His memory is affected and he is finding it difficult to name things sometimes, but also has very lucid, clear times still when he coherent and more like the husband I knew. He wants to be quiet all the time (having been devoted to classical music. He has now been referred to a psychiatrist (query depression/query some sort of cognitive impairment). I am going out of my mind with worry that I might be losing him to dementia and am preparing for the worst although I understand that a lot of these symptoms could "simply" be due to depression and he has been despairing most of the time of late. The other issue is extremely low blood pressure during the trance states (below 80) for which he is being prescribed Midrodine. Obviously his brain is not getting enough oxygen during these states and perhaps these disruptions are responsible. Finally, he has been trhough lots of eye examinations with nothing particular identified, except for early stage cataracts and his prescription is up-to-date. He misjudges distances, depths, colours etc and doesn't look directly at you when talking to you, has trouble seeing/identifying food on his plate.
Sorry about this long, rambling post and about my rather negative state of mind but I am desperate to know whether anyone has been through anything similarly confused and whether anyone has experience with cognitive impairment/dementia and how it all started. Thanks a lot.
Hi india64
first of all welcome to forum. by crikey, reading your entry you really have your hands full. I personally have no experience of what you describe but I am sure that someone out there in the forum world will be able to help somehow. best of luck to you and hubby and I hope someone comes through with some help. have you tried the pd help line ?
hi and welcome,,even if we haven't experienced your symptoms yet your information is important for the future. We can look back and match new symptoms we may have with your experience of PD and medication,so,thankyou for your input,
I wish you both peace

neenag xxxx
Dear India64,

My husband has had PD for thirty years so we have seen many of the problems and differences people with PD experience.

What your husband is experiencing has happened to some older people I know with PD, but there are several different causes and it is really important that you see the Physchiatrist for a full assessment and then perhaps they can treat him with some drugs which will help him.Sometimes it takes quite a while for drugs to completely get out of the system, some we were told take about six weeks. I do hope that your appointment is soon and you will feel a little better to at least know what is going on with him. As to the weight loss , is he eating much and if not you could ask to see the GP about getting some (sorry I can't remember the official name ) I call them build up's they contain all the dietary ingredients you need, losing weight is very common for some people with PD and it should be checked regularly, I would also ask to see a speech and language therapist as this can help with his swallowing, in fact I have just requested one for my husband as he keeps getting chest infection because he is aspirating his saliva.
Another very important thing is to make sure he is drinking plenty as many people don't realise that if you have a urine infection you can become really confused very quickly which will only add to his problems.
It is always really sad to see our loved ones deteriorate and I am afraid there is no easy answer, but is amazing where we get the strength from to support them not forgetting to have some time for yourself to gather the strength to keep going.I am the world's worst for doing this so I know it isn't easy but you need to try.
There are two organisations that support carer's one is The Princes Royal Trust and the other Crossroads they both have many different ways of supporting carer's and don't forget the Helpline of course.
Please let us know how you get on, bless you both
Hello India64,

The name of the builds ups is Forty Sip or Ensure Plus.
Welcome India64,

I cannot add to what has been said except to say that when I was chair of a branch two of the members on changing meds, went away for a while. It took about 6 months of climatisation before they were able to function "normally" again.
Don't give up, we are all here for you!

Dear All

thank you so much for your supportive messages, really gladdens my heart. I do realise that my o/h's body has had to endure a lot of meds changes in the last few months and I'm hoping that in time he can return to 'normal' with plenty of rest but I worry that this might not happen and the best times are gone. I've actually weighed him this morning and discovered to my horror that he has lost 2 stone now. Vivian, thanks for your practical suggestions. Yes, keeping up the fluid intake is challenging, I buy lots of juicy fruit to supplement, which he likes. I've tried fortifying his food (butter, double cream, mayonnaise, extra honey etc) but he knows when I've done so and eats even less then. He had a normal weight at the beginning of the downward spiral so will pursue the supplements - can't see any other way. No wonder he's got no energy! His confusions and misidentifications are in a way the hardest for me to deal with. Been told he should be able to see psychiatrist within a month's time (better than for most compared to latest news reports about times taken for referrals/dementia diagnosis). Have not recently contacted PD helpline but will do so again, as suggested. Vivian you're right, things get thrown at us and we somehow find the strength to cope. It's good to be part of this Forum community and to be able to vent one's thoughts to people who are going through similar experiences. Take care all of you and I wish you all good luck and strength to get through your own challenges. No doubt I will be talking to all of you again soon. All the best.
Hello India64 and welcome .

My husband is 78 and was diagnosed 7 yrs . I daresay you can see now the your husband also had a lot of Parkinsons even before his diagnosis .

At the moment my husband is going through the same continual drooling problem , he isn't having hallucinating problems but has done in the past .

Like your husband he isn't troubled with poor swallow but his mobility is very poor .

He is also on Sinemet plus along with a neuro patch .

Does you husband take any other meds .

Mine had a dreadful reaction to digoxin which was prescribed for his heart, has had problems with other drugs as well .

Don't give up I know how difficult it is and you wonder how you will keep going but it is surprising where the strength comes from .

I must admit one of the things that upsets me is that you don't know how things will be from one day to another .
Hi Johnnie

sorry to hear about your husband. I agree looking back to further than 7 years ago early warning signs about PD were there but I was very ignorant about it at the time thinking this hit only really people in their late 7os/80s and beyond.

My husband is on Sinemet Plus only now plus he's now started taking the Midodrine for his BP and he is also taking Solefanacin for his bladder problems (not that it seems to help at all). He tried Atropine eye drops for his drooling several times in the past but there could be hallucinatory side effects from those so he hasn' done so for some time. He's also tried Zoplicone to help sleeping - didn't do much so because of the hallucinations he has been avoiding this one also for the last 6 months.

What have your husband's hallucinations been like and how long have the episodes lasted for? Did anyone say that they were due to medication? Are they likely to recur and how did you cope with them? - What is the neuropatch?

I agree it's the total unpredictability from one day to the next or even from hour to hour that is so hard to bear and makes planning virtually impossible. Mine had a really good day today but all went pear shaped tonight over dinner when he complained about this terrible hotel, the rude staff, being publicly humiliated and simply wanted to go somewhere else. And I was dishing up some of his favourite food although we had a minor argument about something entirely trival at the same time. He is very sensitive nowadays to any disharmony, criticism of him etc.

I wish you and your husband well and hope you don't lose hope either.

All the best.
Crikey, India 64!! You need more help. You dont mention the professionals once,which sounds to me like they are absent or no good. What are they doing? You cannot cope with this on your own; your first port of call is your GP. Is s/he any good? sympathetic? knowledgeable? If not, consider changing. I know it all takes energy and stamina and Gps cannot be expected to know all the vagiaries of the Beast. Tell them. Its good for their souls!!
Forum members are here to support you psycologically and mentally, but you and your husband need good professional help. If you are going to have to cope with the conseqences of dementia it would be helpful if you knew what the prognosis is. Don't be sidelined! Insist on some answers.
Have you tried Lucille Leaders books? 'Reducing symptoms with nutrition and drugs' is a good one and 'top tips to optimise function'
All the best, Chrissie
Oh India64. I read your posting last night after a particularly bad time with my husband. He has so many similar things to your husband. The drooling, confusion at times as to what he is doing, very sensitive now to criticism. He also has a habit now of not looking directly at me when I am talking to him, this is usually coupled with him not replying. We do have the lucid clear times when he is more like his old self. I did try to post a reply before but lost it!! My husband is on Sinemet and Rasagiline. I dont know whether they are helping. He has now been diagnosed with Parkinsons with Lewy bodies (dementia).
Sorry I cant help just wanted you to know that there are others out there with similar problems and at least we can compare notes and it is so good to know we are not alone.
Do hope you get some help.
Hello India , Withy and all ..

I am very very sorry that I haven't got back but as I am sure you will understand it's not easy when you are doing you best to be vigilant (some might say OBSESSIVE) lol....with supporting my husband I really dislike the term Carer after all we have been happily married for 54 years and it's second nature.

India the Patch is a dopamine agonist which apparently helps smooth out the Sinemet ? In our case it did seem to help with my husbands reasonng /mental ability . He has had problems with Hallucinations and were particulary dreadful when he took DIGOXIN he has Atrial Fibrillation quite a few of the meds seem to have an adverse affect

He was always quite a fit man with no illnesses that we were aware of never lost a days work swam most days of his life . But like I said on reflection I can now see some of the signs were always there . I mean there for very many years

We have been waiting for a few months for a heart scan and it doesnt look as if we will get one tis year . (IF EVER ???

I am not normally pessimistic and while I am able will not give up . Might throw a wobbly now an then that does help lol I am not counting my chickens but am fortunatelyfor us both , pretty good for my age. Have recently injured my foot ( thankful for the stairlift we had installed for my husband ? lol. That was a very interesting time . We got there though and am on the mend .

I have been asked why I dont ask for help , maybe one day I will have to succumb but they are not availe 24 hrs and so not available at the times that we might need help.

I have been taking things into my own hands and getting things put in place to support us . Some of the things have been supplied through social services . Rails outside for instance a chair for the walk in shower . We installed that ourselves . Bought a rise and recline bed and the district nurse has applied for a profile bed for us . Still waiting on that, at the same time worried about making the space for it ..

I could do with waking up one morning with everything in place . lol I might write to the TV programmes . (NOT SERIOUS )..

I do hope things have not got any worse for you .. I am thinking of you .. Hold tight xx

Someone mentioned Lewy bodies It's something I jave thought about . So Complex and after all what do we know , we are all mainly amateurs
Hello India64. I haven't been on the forum for a while and have just read your post.......It could have been written by me about my husband. Everything you said is exactly what I have experienced with him. He has recently seen a Psychiatrist and unfortunately has been told he has Parkinsons dementia. He takes Sinemet plus,Entacapone and Amantadine. He was prescribed Revastigmine by the Psychiatrist and been taking this for 8 weeks but I don't see any improvement so far. There isn't much I can say to you other than you are not alone...My husband is 68 and was diagnosed when he was 49. It is only 4 years ago he started having any problems and no-one would have guessed he had Parkinsons,so I suppose he has been lucky that it has been such a slow progression.Getting in and out of bed is also a big problem now,very tiring when he gets up 2 or 3 times a night.....Hope it helps to know you are not alone.I was glad when I found this site,just to read how other people cope etc. is very helpful..........good luck !!
Hi Chrissie W, Withy and Johnnie.

Thank you all for your lovely supportive messages.

I am very despondent as the last few days have been particularly awful - there have hardly been any lucid moments where I could have something resembling a coherent conversation with my husband and where he actually knew who I was.

Our appointment with the psychiatrist came very quickly but non-conclusive. He couldn't say for certain that my husband has Parkinson's dementia because of the fairly good results on the memory test questions (although overall scores below threshold) but day to day he is forgetful and I'm not imagining this plus of course there are all the other issues. Psych was very nice and helpful explaining all the ins and outs of PD and brain cell loss etc but came to conclusion that "he wasn't there just yet" and that he couldn't say for sure that things were not partially due to Sinemet (assuming Ropinirole by now washed out of system). But the overall message was that things are unlikely to improve a great deal. The dementia drugs I understand are used to boost memory and clearly this is not what he needs at this moment in time. In any case apparently the side effects make everything else worse (e.g. mobility, drooling, incontinence...). So, psych has suggested he takes Quetiapine (very low dose) to start off with (an anti-psychotic) to help with hallucinations, agitations etc. Again, there is a risk that this will impair his mobility further. Otherwise anti-depressants might help mood etc. Will probably be prescribed after further depression test in 1 months' time. So we are kind of stuck trying to find the right balance of PD drugs with Quetiapine but it all seems rather hopeless and on a definite downward slope. Have to wait until GP has been updated and then get prescription from GP. Meanwhile I'm tearing my hair out (literally). - Mealtimes have now turned into battlegrounds - he is no longer accepting my help but can't lift fork and spoon by himself and get any food into his mouth. Stops eating as soon as frustration sets in and I'm so worried about him losing more weight. Is now even rejecting his favourite puddings once they are placed before him says he's changed his mind. Exasperating. Sadly I don't have 54 years of marriage to fall back on like you Johnnie. We have a much shorter shared history and were only married shortly before his diagnosis after many years of living together. I love him like mad and want to do my best for him, keep him safe but I'm feeling like a failure sometimes.

Johnnie I admire your strength and determination to keep going on your own. I feel my own strength withering and feel a great sense of loss. Also very weepy these days. The beds you mentioned seem a good idea. I think I will investigate. Thanks for the explanation about the patch. I think dopamine agonists are now no longer possible for my husband.
Chrissie W, the GP has been supportive getting extra appointments with the Consultant and pressing for us to see psychiatrist etc. We have had some adaptations put in from the local rehab team, which sprung into action extremely efficiently during the immediate crises supplying rails, raised loo seats etc. etc. OT visits still ongoing - all very helpful if only my husband wouldn't constantly either forget how to use them or ignore them deliberately. I think we need to get a stairlift like Johnnie. Yesterday both of us nearly tumbled backwards at bedtime. He changed his mind twice at the near top of the stairs and turned back. The third time he only got half way but I persuaded him to sit on the stairs and a lot of heaving backwards got him to the top (now have back twinges). I dread tonight as he is either quite restless and irritable or too sleepy even to stand up and keep his balance. We are awaiting Social Services assessment (the waiting list is very long although the OT and mental health team have tried to expedite us). Meanwhile I'm meeting somebody from the Princess Royal Trust for Carers next week to see what options there are for me to stay sane. I kind of feel guilty about wanting to have a little bit of life back but if I don't I am not sure I will be able to cope for that long.
Chrissie W, will follow up the Lucille Leader books you mentioned.
Withy, thanks for sharing your experience, at once helpful and terrifying - I am so sorry for you both but it would seem to confirm that my husband is probably not that far away from a future dementia diagnosis. At least it gives time to plan for the inevitable. Do you get much help from external carers and, if so, how does it work for you and more importantly how do you cope, how do you adjust in your relationship?
Sorry for this very long message and my negativity. Everything just seems very bleak at the moment.
All the best to all of you!
Hello Jay

for some reason I missed your message last night and so I just wanted to respond to your good luck wishes too. Revastigmine was mentioned by the psychiatrist to us as well but he said he wasn't comfortable prescribing it just yet. Your o/h has indeed been lucky to have lived with PD for so long without any major problems. Mine had only 6 years before the mental health issues cropped up, having been diagnosed at 63. I am sorry you are not yet seeing an improvement. Do you have support for yourself and your husband at all? I hope you do and that is what is currently uppermost on my mind, how to get what suits us and what we both really need. It does indeed help to know that others are in a similar position and to hear how they cope and what works for them. The tiredness is really crippling, I agree. The last two nights mine was awake from 2.30am onwards and neither of us got back to any decent sleep.
I wish you and your o/h all the best too! Thank you for your post.

Hello India64. I haven't been on the forum for a while and have just read your post.......It could have been written by me about my husband. Everything you said is exactly what I have experienced with him. He has recently seen a Psychiatrist and unfortunately has been told he has Parkinsons dementia. He takes Sinemet plus,Entacapone and Amantadine. He was prescribed Revastigmine by the Psychiatrist and been taking this for 8 weeks but I don't see any improvement so far. There isn't much I can say to you other than you are not alone...My husband is 68 and was diagnosed when he was 49. It is only 4 years ago he started having any problems and no-one would have guessed he had Parkinsons,so I suppose he has been lucky that it has been such a slow progression.Getting in and out of bed is also a big problem now,very tiring when he gets up 2 or 3 times a night.....Hope it helps to know you are not alone.I was glad when I found this site,just to read how other people cope etc. is very helpful..........good luck !!

sorry having computer problems this morning (v. tired!) - managed to duplicate your message at the end of mine - many apologies!!!!

Hi India64. In reply to your posting, no we have no help from carers but hubby has attendance allowance now, which I am spending on help for him (sit and rise chair, incontinence products, adaptions to the house etc). No PD nurse but brilliant GP. We moved to a bungalow 7 months ago, so no longer have the stairs problem. Disturbed nights are a problem. He was up about 3 times last night and was still wet this morning! Luckily this isnt every night. GP has put me on anti depressants which helps me to cope. I wish we could laugh about his problems more, but sometimes the enormity of it all is too much. Best not to think of the future. We are all in this together arent we?
Love and prayers
Hi again India 64
Just had a thought about what seems to help my husband - helping round the house. I dont know how mobile your husband is but mine likes hoovering and also trying to help with all the jobs we have had since we moved. He is always much brighter and responds better when he has been "busy". Sitting round all day is very bad for his mood, and also for mine when I am very busy. But then he is quite mobile. We are also able to still go out for walks together, as far as he feels able to. Make the most of what you can still do together.
Hope things are improving.
Good evening everyone . I should be getting to be didnt get to sleep last night until 2 am and up at 6 am . My husband has the district nurse visit to take his blood for warfarin checks . and while she was here got talking about getting in and out of bed . She straight away applied for him to have a profile bed . We have been waiting for quite a few months but it looks like we might get one very soon . Also I asked the GP who has also been brilliant with both of us . about having help with him need ing the loo and not being able to get in and out of bed . He arranged for a Nightingale Nurse to visit us and now My husband although he isnt in continemet uses a sheaf and and overnight bag . It took abit of getting use to but he has accepted it and it has been a great help to both of us . We would never manage without the stairlift now although expensive worth every penny in fact I injured my foor last month and have needed to use it myself as well ..
When I asked the GP about Dementia he told me in P arkinsons it is a different sort of dementia .. Weo havent had a very good day today . Hoping for a better one tomorrow . goodnight all