all the best to both of you hope he gets the right balance soon.gus
Thanks, Gus.
The kind words comfort me, as always.
If anyone else suffers depression and takes Azilect ( Rasagilene) the detailed search by the hospital pharmacist has unearthed Mirtazipine as a safe anti-depressant to take with it without risking the seratonin syndrome.
The only other is Agomelatine which is difficult as you have to apply for a license to prescribe it.
Thank goodness our chemist refused to fill the prescription for Sertraline as it would have been very dangerous to mix the two.
At last, a lifeline!
Despair receding!
Love
GG
i take that you feel a little better it sounds it,good news
Its sunny in Northumberland
Hello my Friend
There have been many times I can tell you when I have stood on the Tyne Bridge, my mind a battlefield I was estimating how long the fall would take before I hit the quayside , I was not going to jump into the river as I did not fancy drowning, so I estimated 3 or 4 seconds airborn then oblivion and so many times I almost did it, I considered jumping in front of a HST but having a interest in the rail system I knew the shock that the driver has to endure, poison, no didnt fancy that , and so on and on, this went on before PD diagnosis which was in 99, years before . Then after I was told that I was in the clutches of one of the most horrible of diseases known to man, , you would think that would be it for old Fed and I would return to Tynesides Iconic Bridge and do my birdman of tyne impression, but no in fact far from it ,I was given Madopar and Cabergoline and within a week I was feeling much better the depression had lifted and as the drugs began to work I saw things in a new light, mind you I had to cut the cabergoline as it was turning me into a sex maniac, so that went to be replaced with , ohI cant remember sorry, it will come back, sorry GG, but Iwas feeling so much bettr and as known that low dopamine levels can cause depression I was killing two rats with one stick, or words to that effect, also I have the most amazing team behind me at NTGH who have helped me so much, not to mention a really efficent community health care team all of who I cannot praise enough , in other words GG these folks saved me, oh I still go off on downers but nothing like the creeping cold blackness that would haunt me for months, completely crippling me I am much stronger mentaly if not physicaly, and I am now equipped to deal with what lies ahead , I know anyone reading my posts may be of the opinion that I am slightly unhinged, well if you do I am glad as it is one of the best ways of dealing with our mutual enemy BLACKHEART and it works for me, I really do enjoy being very silly, even my Lady was helpless and totally consumed in mirth at my impression of clint eastwood impression geordie style and I QUOTE,, " how yee lot, yi bedda say ya sorry ti mee donkey, or yah al deed infower secuns"
see what I mean, in fact its given me a idea, but I will post it elsewhere.
So GG its been a long and winding road, and I know I am very lucky I consider all the great professionals mentioned here as personal friends without them I would not be here then by no means leased, no thats not a spelling mistake sometimes she does nightshift a the sewage treament plant,, no no she doesnt I just made that up. Take many care GG AND ALL YOUSE
Hi GG,
I have only just seen your original post on 19th September.. So sorry that your husband is still suffering so much mentally from the damage caused. by d.a.'s..
"Never heard of impulse control disorder with pwp's" Amazing - its even on the patient leaflet in the Sinemet packets now. By now you will have seen your Parkinson's nurse so I hope this as helped you with the hospital medics. Cannot add to what has already been said but would like to wish you all the best.
Thank you, Fed and Eileenpatricia.
Friends on the forum keep me going. Thank you too to Ezinda for her kind email.
Our Parkinson's nurse was a great help and spoke to the staff about the importance of his Sinemet routine, and gave other useful advice.
She offered to run a training session for staff....much needed!
Things continue to improve very slowly....my husband is taking a very low dose of Mirtazipine and it will be slowly increased to a therapeutic dose.
He is being monitored for side effects and is becoming a little brighter in his mood.
Sinemet is appearing more regularly but still not every 2 hours.
Life goes on but the celebrations for our Golden Wedding next weekend may have to be cancelled.
Fingers crossed it will go ahead.
Love
GG
GG and spouse, you have done immeasurable good by highlighting our plight into catastrophic obsessive/ impulsive behaviour disorder than most.
(Even the new name makes it less offensive an injustice)
My best wishes to you both.
you can now highlight the injustices within the nhs.
Thank you Eck for your good wishes. So many forum members are kind and comforting.
Our 2 wonderful children arranged an afternoon tea in The Dales for us and invited family and close friends.
It was a lovely surprise and my husband was allowed out of hospital for weekend leave.
Although there were some tears, it was a very happy time.
When I collected him from the ward, he hadn't had his 2 hourly Sinemet for 5 hours.We waited an hour for his medication to be packed.
I took him back today and met a Sister for the first time who said she was preparing a care plan which she told me should have been done on arrival 2 weeks ago.
An enormous part of his problem is that although it almost destroyed his life and that of his family, he longs for the euphoria and thrills of the DA years, the risks and excitement of his secret life.
He took one Requip XL pill a day and never even thought about having Parkinson's as he pursued his compulsive hypersexuality adventures , covering everything in a web of deceit until our savings were gone and all his betrayal was revealed.
Life in the real world I for him is grey and frightening.Trust is gone and the loving closeness we shared for so many years is too.
We fight to keep our marriage alive but so much has been destroyed.
At least medical staff have prescribed a reasonably safe anti-depressant and things may improve.
But we have served our purpose in enriching the shareholders of GlaxoSmithKline.
Love
GG
I have chosen a new picture to accompany my posts.
Enlarged, it sums up my view of the current NHS situation.
As a technophobe, and an incompetent too, I am not sure if it has worked!
GG
No, it's still an orang utang.
Will try later!
x
Dear Golden Girl,
I am so sorry that you have been having such a dreadful time, as you may remember my husband tried to get himself killed last year by getting out of his nursing home and lying down in the road , a very busy one with a blind corner, all this when he was having one to one care! Thankfully a lady driver saw him in her lights and stopped the traffic and called the police and paramedic's so he was unijured and was allowed to stay in the home with no addmission into hospital.
You I and our husbands have been through many years of PD and the medication as well as the changes to our whole lives, and it does not get any easier.
When my husband was in a mental health hospital six years ago due to the drugs causing paraniod or delusional idea's he was treated appallingly being left naked on the cold wet room floor, pressing a bell that didn't work or was switched off, not having his drugs on time and No water in his room because that is not allowed, and generally nurses being cruel it was the worst time ever in fact my husband son and I prayed around the bed together because we though he would die.
I made a formal complaint to the health authority fully backed by our PD Consultant and PD nurse and got nowhere, it was a complete waste of time, I did also ring Steve Ford to say how bad it was and he told me that they were going to address the care of PWP's in mental hospitals that very next year, now I don't know what has been done but care for people with PD is still a huge battle and it frustrats me that after forty years of struggle we are still in this position. This is one of the reasons I don't come on here very often as it just makes me angry and really sad to see so little progress.
We all need a cure but you have to improve lives of people who are struggling for some kind of day to day life and help families to stay together with much more support on the ground.
We were part of the Yappers group many years ago and all you younger ones need to keep banging the drum as it is your care and your future please keep fighting, I know how hard it is but we have to have better care and understanding everywhere.
After our four year battle of trying to get better care and unstanding at my husband's nursing home it is at last getting so much better I feel a great weight has been lifted, but I still wish he could be at home with me where I can help to look after him and we can spend the rest of the time together instead of him being an hour away and me with my case at the ready to drive off at anytime.
Golden Girl you have all my love and prayers with you both and I know only too well the hurt you have felt and are still feeling please look after yourself as well.
love vivian
Thank you so much, Vivian.
I know that you understand because you have been in the same dark place.
My husband is home now and life is beginning to return to some semblance of normality.
His time in hospital was just a chaotic, disorganised period of muddle and lack of real care.
At his discharge meeting, the psychiatrist in charge of his care, who chatted to him for a total of 5 minutes, sent his apologies ,along with the community support nurse who was meant to lead the meeting!
The best support now is from Age UK who will provide a volunteer for 12 weeks to try and encourage my husband to socialise more.
He will take him out for a couple of hours a week and this will at least give me a break.
I feel so let down by the NHS and tired of struggling.
I do hope that you and your husband get better care now and find some happiness.
Love
GG
Dear Golden Girl,
I am so glad that you have your husband home now but as you say you feel let down by the NHS and this constant struggle really does wear you down, it saps all your energy what little we have left after all this time.
It has taken me 4 years to feel less tired and clearer in my head since my husband went into care, I expected it to take about two years as several of my friends who have been through the same had warned me it would take that long but I think it has taken longer because of the continual struggle to get the nurses and carer's to understand parkinsons.
I am with you the struggle just becomes too much and the fact that our opions fall on deaf ears all the way through doesn't help, we have to hope that the younger ones coming behind will have better luck.
All my love
vivian
Good morning Golden Girl. I was greatly saddened by your troubles, it feels like the word is against you and you have nowhere to turn to for help, well I was in the same situation in 2010 ,on the point of Hospitalisation and consumed by depression, and in a very bad place, suicide became a possible fix, but I always thought about the pain I would cause my family, I avoided Hospital as a dirct result of my team at NTGH, when I explained my horrifying depressive mindset, and my suicidal thoughts my Nurse Consultant who if I may say has been a first class mentor and expert professional in every aspect of my treatment, I was seen by a Psychiatrist the same day, and from the following week I was visited at home by two community health care workers both were very helpful and instrumental in my on going recovery I was already taking MERTAZAPINE and I did not want any more drugs in my system, this was agreed so as I said, week after week my two rescuers visited me, accompanied me on my PD visits and even took me on visits to the coast, only2miles away, art galleries and places of interest to me, gradually buiding my confidence and self esteem which parky had robbed me of as the weeks passed I became stronger and much more capable, until the day I had to inform them that I was ok and their work with me had given me my lifeback, also I was visited by and visited NTGH to Dr A Mc,,,,,,r a Psycologist and his help and advice consolidated the whole team looking after me, its only now looking back over my time with these , well for once I am lost for words GG, they saved me. So I know things are not good for you now but go through every possible channel, seek out every source of help, you and your dear Husband deserve nothing less Golden Girl, be strong Lady, you can do it,and keep in touch with all your friends here, even the smallest problem, an be shared, and a problem shared is a problem,,,er,,,,I cant remember,,squared, flared,mared, nope cant recall how it goes but if its true and you share it with all your friends on PDF,it will completely dissapear, sorry GG Im trying to lift your spirits, I am going to a meeting now, all members have pd or their carers, oh and yesterday I did one of my talks to the new interns at NTGH I really enjoy it all those very pretty young ladies hanging on my every word,, its a tough job GG but someone has to do it.
I wish you well Lady The Very Kindest Regards
FED
Oh lovely Fed
Your kind words do comfort me.
I know you are right and that there are people out there who will help us and we must just keep exploring every avenue.
We have been promised a volunteer by Age UK who will help my husband as you were helped, in going out and regaining his confidence. We are going on holiday for 2 weeks and then hope something turns up to help him begin to socialise more.
Little bits of normality keep appearing and my husband seems to be slowly responding to the Mirtazipine.
We are very lucky to have 2 great children and 5 grandchildren who are there for us but even then the world seems a lonely place sometimes.
It is wonderful that The Forum is here with so many kind and caring friends.
Love
GG
Hello Golden Girl, Keep pushing and asking and generaly being a pain, and soon you will have a result, on my 60th birthday I was in NTGH with a very x10 water infection, I was having to dive to the loo every10 mins and I asked for my drugs earlier as I was shutting down , they refused so I couldnt move and when it was loo time , well thats all water under the , well er,,, bed really, I explained what had occured to my senior pd specialist and all was changed by 1 A4 sized sheet of paper on which were the instructions on how they must alter their routine for pd patients, they did and it worked, it was simple yet effective GG, there is a old saying my gran used to say, when they allowed her home that is, ALST GROB YAH CHICKEN BY T NECK FORE ITS LIKELYITLL PECK, (YOU ), ??????? YES I could never understand her either.
Kindest Regards FED
Hello GG, my smileys are me, doing my Stevie Woner or even Wonder impression my Ladies heart, the same big heart that cares for me so well, this is my wife she is very grumpy this morning but as you know first hand how grumpy humans with PD can be i dont blame her, especially when she appologises and gives me one of those lovely kisses thst makes me feel like im plugged into the National Grid after 31yrs she can still do that, I am 64 and my lady is 69, but dont mention it, I think I got away with it this time but I have to be cautious as she never exceeds 50-55 yrs, strange that eh she and puzzling, she commandeers the bathroom 3 to 33 times aweek and some weird and wonderful sounds can be heard one of the highlights of the week is her masseur, HE, YES THATS RIGHT HE is very skilled, he arrives at 11 am on thursdays, and really gives her the works, he gave me a one "A MASSAGE" 1 MONTH AGO and he is good, but age 23 very very very handsome ( the young swine) and when he starts on my beloved she immediately starts moaning and quietly and constantly is uttering the word yes,, ooooh yes ooh just there yes please, now I am quite sure that Connor would love to give her one every day GG,,( A MASSAGE) and of course I am jealous, my lovely wife I KNOW will not betray me, we have had difficuties over the last 2 yrs but we are through them now and I TRUST HER implicitly, It was foolish of me to think otherwise, but when I hear her responding to Connors touch, well as I said I BECOME EXTREMELY JEALOUS VERY DANGEROUSLY JEALOUS, and when he completes the pleasurring of my wife for which he charges £40 BY THE WAY,and leaves I have asked my dear wife if she could tone down the enthusiasm a teeny weeny bit, she just laughs, and tells me off for listening, but I WOULD HEAR HEAR her 4 miles away however as it was me who arranged this for her she refused at first , but after Connor persuaded her to try a 15minute quickie, she was hooked, so its my own stupid fault, however, there are benefits, she was in pain every day, she has OstioArthritus, sorry if thats wrong spelling, that pain has gone, she had a bad fall about 3 months ago and was in pain from her left shoulder to her left foot, and this youngster has made it leave her, so I will have to curtail my jealousy GG, FOR MY LADY, oh also you should know he only gives her a massage, there is no sexual contact, though he is a outragious flirt and I have no doubt he will go further if aske to do so,, lucky young bu????? person, oh how I wish I could turn back time toour first date, and our first kiss,, well we will leave it there GG, JUST THOUGHT I WOULD inform you and everyone else that if you treat yourself or your wife/partner to this truly relaxing therapy It can work wonders least it has done for my wife and I
Kindest Regards Golden Girl be strong FED
Hello Fed,
You always make me smile with your posts and I have to agree with you a good massage makes a lot of difference to how you feel. When my husband was at home we both said we would treat ourselves once a week to a relaxing massage, since he went into the nursing home I have kept it up for myself and he has a shoulder and hand massage at the home. I have tried other therapies and lucky for me my therapist does most of them so now and again I have a facial or another relaxing one, I have to say I am lucky that mine only charges £20 and she even cuts my toe nails now for an extra £10 how lucky is that.
It is so lovely for GG to have the support of the forum and I was really pleased to hear you had good support from your local NHS how I wish it was the same everywhere services seem to be so different depending where you live these days. Please do appreciate all the days you have together as life on your own or separately is no fun, I and am so glad you have come through a sticky patch stronger.
I hope you have a lovely time on holiday Golden Girl and best wishes to you both
vivian
So sorry and saddened to read about how the nhs has let you down.
I have been amazed by the care I have received from nhs in Tower Hamlets (and we read so many negative stories about TH and our awful Mayor). On discharge from hospital I had home visits from a wondeful OT, superb physios, lovely carer in the early stages of discharge, psychologist to help with the depression, mood swings and gross anxiety. And my GP is excellent. Have also used the phone to talk to PUK nurses.
wishing you a restful holiday Golden Girl.
My wife has been very busy over the last 1.1/2,hrs, she is wearing some very , well lets just say items that show off her figure, also she looks good wearing new make up I thought for a minute that I was in for a treat, but no I asked if she was going out somewhere but no its Massage Day, young Connor is due, ah no he is here I thought it was strange for beloved to behave in this way, he will be here for 1hr so I am going to put my headphones on and listen to the music of Thomas Newman, maily because I love his music but also its perfect for blocking the racket my wife makes at the hands of that good looking 6ft 2 fit swine," he is a nice guy" Im just very jealous ,I know he will not overstep the guidelines of decency and he als is highly recommended, he is a phizzzzio for our local football team, plus he is happily married, and anyway if he was to try it on with my Lady , well if you cross a very angry T REX with the ALIEN, that would be his fate as she will not allow any hankypanky, that used to be a childrens tv programme when I used to watch, also the wooden tops Bill and Ben, sounds like the Condems, they are the finest example of woodentops I have ever seen .
Bye youseall FED