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Parkinsons Dementia

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sunray

Thats great Natasha, lets keep talking all love Sunray

Giffy

Hi. I fear my husband may have dementia too; loss of concentration, lots of the other stuff talked about, memory loss, inability to find the right word, and constantly going into a room only to forget what he was in there for - he says maybe 20 times a day. I dread this getting worse - we're a bit new to this, Husband diagnosed some 3 yrs ago and medicated for around 9 months, on a v low dose of Sinemet.
When I started reading all these posts on here, I just wanted to scream and scream - IT'S NOT FAIR, IT CAN'T BE TRUE - but clearly it is true and I shall just have to get to grips with it like all you guys out there. Love and extra hugs all round.

carnation

We now seem to be going down the dementia path, it is so awful.   The hallucinations became more pronounced a few weeks ago.   We had been seen at the memory clinic, then followed up two weeks ago and were given the diagnosis of probable dementia. He has started Exelon two weeks ago, no great change yet.   I know this can only go one way and I am so fearful.  I daily hate myself for getting cross and frustrated.   Reading posts from other is a comfort to know I am not alone.  One day at a time I suppose is the best thing.

best wishes to all who care for those with PD.

KatC Parkinson's UK

Hi Carnation, 

This must be a really difficult time for you and your family. I know from personal experience how frightening a dementia diagnosis can be. 

Have you been put in touch with anyone who can offer support and advice? Dementia UK provide specialist dementia nurses and have a fantastic free helpline you can call them on 0800 888 6678. The Alzheimer's Society will be able to offer support too. 

Take care, 

Kat

Izwiz

Hi Carnation

My husband was diagnosed with Parkinsons at the age of 50 and is now 68. I have had a terrible last few years.  My husband was referred to our local memory clinic and it was 12 months before he had an appointment. He has now been diagnosed with dementia and is on a medium dose of Rivastigmine. His symptoms were hallucinations, staring into space, looking confused, not responding to me, not talking etc. He also seems to have lost his logic skills - he used be a joiner but now he cannot remember how to do the simplest of things but still thinks he can, sometimes with disastrous results. About 21 months ago he was taken off his strongest Parkinson tablets as it was thought these were contributing to his memory problems. Almost immediately, in my eyes he became worse and also started bed wetting. I was told this was part of his Parkinson symptoms. I was not convinced. I was nearly at the end of my tether. I felt so guilty, angry and frustrated all the time. So much so it was beginning to affect my health.  Then about 4 months ago we went for a prescription renewal at our local doctors. I was asked why he was taking Carbamazepine - he had been taking 5 a day for several years for neuralgia. Our doctor told me to take him off them and said he should never been on such a high dose. I did this and could not believe the difference in my husband in only one week of coming off them. He is walking better, he is talking again, he no longer looks confused, his memory has improved and most importantly the bed wetting stopped. He still has the occasional accident but I can cope with that.  All our friends and neighbours are commenting on his improvement. I am very angry that no one over all these years had questioned his taking of Carbamazepine. They were literally turning him into a Zombie. I cannot help thinking these tablets have harmed him and contributed to the onset of dementia in some way.  Don't misunderstand, he still has some signs of dementia but nothing like when he was taking Carbamazepine which is a drug for treating epilepsy. I feel that at the moment we have been given a reprieve from what is to come so we are going to make the most of it while we can.

I can really empathise with you and know what you are going through.

Make sure you try and get some me time - I go to a local beauty clinic for a back massage once a month which helps me to relax for a while at least.  Take Care.

 

fedexlike

Hello Dear Friends

                This is a subject I FEAR as I  have many of the symptoms  seeing  cats  and  squirrels,  my  Mother  and  Father (both  deceased) plus a almost  impossible to control mischief making ability which  gets  me into  muchotrubbble (spanish for trouble),, if I lose  it  how  will I know  plus  I  have  donated  my  brain  to science  but  at  the  rate  my brain cells are  dissapearing  there  wont  be  owt  left  by  the  time  I shove  off.

                     Fed

barnsleynanna

Hi Natasha. I'm glad you started this thread. Like other posters on here, I've found a lot of information regarding Parkinson's Dementia on the Alzheimer's forums. My 82 year old mother was diagnosed with PDD only a week ago. We had to attend a memory clinic for the results of her CT scan and memory tests, which was terrible. Although the consultant was a lovely chap, he asked mum about her memory, whether she had hallucinations, how she found daily tasks etc. Mum, of course, denied everything and said she was perfectly fine, so the consultant then turned to me and asked if I disagreed with her. I thought this was a terrible way to conduct the appointment. It basically meant that I had to state in front of my mother that everything she said was wrong. I've since complained and told that next time, I should ask for 'time alone' with the consultant. Anyway, mum's memory test (can't remember what it is called)... went from a 72 score last June (apparently 'normal would have been around 83). Her last test a few weeks ago, she scored only 58, so to me this looks like a fairly fast progression over a period of only 4 months. We are expecting a visit from someone recommending different medication next week. The consultant also said she had frontal brain shrinkage, so I've also looked up frontotemporal dementia, as a lot of the symptoms link to that as well. Mum lives in a sheltered housing 2 bed bungalow, (we live a 5 minute walk away). My husband and I want to move in with her and sell our own house when she gets worse, but I'm told that although we can do this, it might be seen as deprivation of assets as my husband is 65 and would then class her home as ours as well. It's so frustrating! Anyway, nice to have a forum thread linked to PDD - stay in touch and remember - you're not alone!

john947

Hi Fed

you have such wonderful sense of humor.Im getting into a few  hallucinations myself,strange but harmless. They usually come while in bed and if I add a pill c/l the day before.So there a med problem not usually PD.Mine are people usually faces on the ceiling.I cant wait till I get whole people sitting around me like a few of my PD buddies sort of would enjoy the company,better than watching TV here now,LOL.Theres to are med caused but hard to get people to challenge their doctors meds  orders.Im glad i do my own as Im much better off for doing it.Ive read with horror what some have written in,When you go into a home most never get approiate care especially with PD.They just wont spend the extra time.I advocate for several patients now and while I haven't raised much cane yet the time is coming.Ive told faculties PD is a long term illness and if managed correctly most can put off a home right up to the end.But today there are the charlatan homes who prey on people and get them in far to early.

Fed and all of you take care of yourself and read up on PD and listen to others here and save yourself allot of future pain

john

carnation

It seems to be fourteen months since I was last here and we had had a diagnosis of lewy body dementia.  Quite a change since then.  No longer driving, can't believe my husband was driving this time last year.   Sleeping throughout the day even more.   Concentration so limited, he really does nothing and does not have much interest in anything.  What I find hard is his total lack of effort, he just can't be bothered.  He has an indwelling catheter.  It is important that he drinks a lot to help prevent urinary infection.  To this end I am constantly giving him glasses of water etc.  he keeps complaining there are "bits" in the water!  There is nothing there.    Then of course I need to constantly remind him to empty the leg bag of collected urine, it is a constant round of nagging.  I hate what I am turning into.   My days get chopped up as I have to drive him to classes, lunches etc. he is SO reluctant to take a taxi, it is ridiculous.  Short pieces of time are not much use when you want to do things.  This is only going to get worse.

john947

Yes LBD is much worse than PD.I knew another who had it He lived about six years after DX.At the end he liked to watch TV some,He lived in a good facility who took good care of him.He had troublekeeping focsed but loved when his wife came to visitIf.He also had a good sense of humor,Take care of yourself,patience works wonders when faced with ordeals such as this

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