Have tried to post many times but failed every time due to crying too much. Have called helpline and spoken to nurse advisors xxx who don’t recognise the experience we have had so far.
OH PD so different to anyone else that I feel lost and scared. OH finally dx October 2017.
Initially November 2014 he was given benzodiazepines and antipsychotics for depression and anxiety. Changed dramatically February 2015 - light in eyes went out, emotionless, reduced speech - changed character and personality now blank and silent. Previously chatty sociable funny lively - life and soul of the party. My overwhelming loss of relationship is beyond bereavement since he’s still here but I feel mega resentment, anger and fear.
Variations in medication led to no improvement - had to beg GP for MRI and neurology appointment. DX in under ten minutes, given Pramipexole and told to come back in four months. Took Pramipexole as instructed for 3 weeks which caused panic attacks, extreme pain, no sleep and endless pacing of 5 miles a day around house and first suicide attempt. 10 days later discharged on Madopar with no improvement …3 days later second suicide attempt - overdose, life support and psychiatric hospital for 6 weeks. 15 months after dx no PD medication but taking 3 different antidepressants and waiting for hospital place for medication under supervision. PD symptoms clearly evident. Being “at home” is like living in a tomb - we live separate lives and I go away as much as possible. One son doesn’t talk about it - the other is angry with me for being “uncaring”. It has been so hard to cope before and since dx that I am already burnt out and can only manage if I don’t think of the past or the future - just the current 5 minutes.
Today = appointment with the psychiatrist who suggested giving Madopar for the physical symptoms …but stopped when told what happens next…
The loss of relationship - increasingly reduced expression, speech or emotion from February 2015 onwards is so painful and unbearable - this aspect of PD is not discussed or understood sufficiently.
Dear G5carer. I haven’t been on the Parkinson’s Forum for quite some time as my husband and I are no longer together. I just wanted to reassure you that you are not alone. Personality changes in Parkinson’s are much more prevalent than most people realise. My husband’s behaviour (which I won’t go in to in detail as it causes too much bad memories) was mostly due to his medication. It affected our marriage really badly. My children, also, did not understand. I just want you know you are not alone and do not think it is your fault. Just make sure you do not keep quiet about things and seek help. Be vocal and put things down in writing. For a long time I did not know if it was just symptoms of Parkinson’s or the medication. It is so complicated. Be kind to yourself. I wish you the very best.
Nothing is like living bereavement. I know that my character is changing, angry, no patience, nasty. Even fully aware, I am unable to do anything but sob when confronted. My husband is retiring early to become my carer.
I have no crystal ball, I am hopeful, it is all I have.
The thing to remember is that nobody is to blame,and everybody’s parkinsons is different.
Hi @G5carer,
It’s lovely to see that you’ve received some supportive comments from a few of our members. My heart goes out to you and your husband, you’re absolutely right, what you are experiencing is a form of bereavement and it is not uncommon for people affected by Parkinson’s to feel this way.
It’s great that you’e expressing how you feel via the forum, however, if you’d prefer to talk to someone in person, we have over 350 volunteer-led local advisers across the UK which you can look up here - https://www.parkinsons.org.uk/information-and-support/local-groups
You may find talking to a counsellor rather than your family and friends can give you the opportunity to have frank and confidential conversations, and this may help you cope better. Please visit our website for more information on this here - https://www.parkinsons.org.uk/information-and-support/emotional-support-and-counselling.
Please continue to use the forum and take full advantage of the support that is being offered to you on here.
Best wishes,
Reah
I read your story and was moved to write back. My Dad died in 2013 while Mum was in the early stages of PD. In the last year there has been a rapid decline in Mum’s condition. She was adamant that she wanted to spend Christmas with us in our recently bought new home in Hertfordshire. Her grandchildren were excited and as mindful we were about her worsening condition, we were optimistic about Nana having a memorable Christmas with us. It turned out Mum spent most of her time trying to busy herself between the worktop and the kitchen island, picking things up, putting things away (usually in the wrong place) and largely ignoring her once-beloved grandchildren. I know this is all part of the PD and possibly side effects of the drugs but the personality changes in Mum have meant that she hardly ever engages with us or smiles. Mealtimes at Christmas were once the happiest of times but this recent Christmas we couldn’t help but feel sadness as much as we tried to involve Mum she just “wasn’t there” and was pretty much silent most of the time. She’s stopped using our names, possibly because she’s not quite sure who we are at any one time, and we spend most of the time trying to reassure her that whatever or whoever she’s looking at isn’t really there. I fully understand your pain and please don’t think you’re alone in your journey. I’m going up north this weekend to see Mum and my plan is to sit with her, hold her hand and talk with her about happy times, but to try and get her to talk about the pain and frustration she’s feeling so I can at least share it with her and we’re in the moment together.
So sorry for the nightmare you & yours are experiencing.
Questions:
Did your OH have any PD symptoms before the antipsychotics were given?
Did he show any signs of suicidal ideation before antipsychotics were given?
Did he show any signs of suicidal ideation before Pramipexole was given?
We put so much trust in the experts.
Did anyone talk to you about the risk of drug-induced parkinsonism before he was given anti-psychotics?
Drug-induced parkinsonism can remit in many cases if the offending drug is identified and withdrawn. A minority (up to 16% ) however may go on to develop Parkinson’s disease.
Did anyone tell you about akathisia after the suicide attempts?
I learnt about akathisia from a patient forum. I had never seen the word before so I asked what it was and recognized the description “walking at a fast pace all over the house”.
Akathisia is an emotional state caused by over 100 different drugs, primarily antidepressants and antipsychotics, but also antibiotics, anti-hypertensives and others. It causes suicidality, homicidality and other disturbances of behavior –
It can range from a constant and disturbing mental unease through to an intense emotional turmoil – and mental restlessness.
This can be accompanied by physical discomfort, an inability to remain still, or an obvious motor restlessness or fidgetiness. The problems caused by treatment can in many cases be worse than the illness being treated.
It may start within an hour of a first pill or only appear after days, weeks or months. It may only start when the dose of the drug is increased or decreased, or the drug is stopped.
A common response from doctors when presented with symptoms of akathisia is to increase the dose, which then worsens the problem.
Chapter 30 Drug-Induced Movement Disorders K.D. Sethi, J. C. Morgan (in Parkinson’s Disease and Movement Disorders ed. J. Jankovic, E.Tolosa 2007 Lippincott Williams & Wilkins)
DIP is a common complication of antipsychotic drug use, occurring in 15%–60% of patients treated with DBA .
In one study, 51% of 95 patients referred to a geriatric medicine service for evaluation had parkinsonism associated with prescribed drugs .
Another study found that in a general neurology practice, 56.8% of the 306 cases of parkinsonism were either induced by or aggravated by drugs .
Frequently, these patients are misdiagnosed with idiopathic Parkinson’s disease (PD) and treated with dopaminergic drugs without benefit.
In patients who develop DIP, the condition typically develops between 2 weeks and 1 month following introduction of a neuroleptic or an increase in dose.
. In one series, 50%–70% of cases appeared within 1 month and 90% within 3 months
Extrapyramidal symptoms associated with antidepressants–a review of the literature and an analysis of spontaneous reports . Madhusoodanan S, Alexeenko L, Sanders R, Brenner R. Ann Clin Psychiatry. 2010 Aug;22(3):148-56.
Several reviews of case reports of EPS ascribed to the use of SSRIs found that the most common type of EPS was akathisia, followed by dystonic reactions, parkinsonism, and tardive dyskinesia–like states.
Although we cannot estimate precisely the frequency of EPS with antidepressants, it is essential to recognize that they have been reported with different classes of antidepressants (SSRIs, SNRIs, NDRIs), are not dose related, and can develop with both short-term and long-term use. Any EPS can interfere with patient compliance, causing significant morbidity and, ultimately, decreased quality of life.
Hello Appletree
I shall try and reply to your relevant questions systematically:
no symptoms before antipsychotics - but has since had Mri and Dat scan so PD dx definite?
No discussion/explanation about side effects of antipsychotics - every one he has been given to date causes major brain fog/confusion - takes 6+months to recover from taking them if ever
No suicide ideation until Pramipexole and Madopar
No mention of akathisia ever
I recognise your thorough research (many unhappy hours spent on the same pathway) and despair of “treatment” that follows standard dot to dot pathways without reference to ensuing effects - he was discharged after the first event with a carrier bag full of medication including 12 boxes of paracetamol!
I’m sorry if what I relate upsets anyone but it has taken me a year to be able to start talking about it - pretending it doesn’t happen helps no-one.
I also appreciate the really kind comments and understanding - hearing that its not just me helps but clinicians don’t seem to want to know - just discuss dosage options and ignore the human fallout. Trying to speak up? one psychiatrist shouted at me twice in front of the clinical team and OH - others just ignore me and hope that I will eventually shut up.
DelaSoul - what you are planning to do with your Mum sounds lovely and I hope this makes the pain of Christmas fade. My OH used to be like a Pied Piper with children but now he can hardly respond to our grandchildren.
Losing your significant “other” each and every day to blank expression no emotion and no speech causes so much pain that I can’t go there which is what my son can’t understand.
thank you Hubby - I appreciate its not his fault or mine - and probably I’m expressing his pain as well as mine which is why its a bit deafening
I understand that PD is a boutique/unique condition to each individual - but why isn’t treatment fashioned in the appropriate manner for each person too? does anyone else think like me?
Thank you for making me feel less alone
Hi,
You’re not alone, I recognise your emotions only too well. Thankfully we did not have the suicide attempts, but have had other traumatic moments resulting from OH being absolutely convinced of things that were not true and making false accusations.
OH suffers badly from hallucinations and dementia, so caring is a challenge. What we have learned is the only one anti-psychotic which is compatible with Parkinson’s medication is Quetiapine. There is a relatively new drug, Opicapone, which improves dopamine levels by reducing the rate at which dopamine is destroyed in the brain. Taking this reduced the amount of sinemet required by 50%, which together with a small dose of Quetiapine has significantly reduced her hallucinations. Since you’re not adding synthetic dopamine but better utilising what’s being produced naturally it might have less side effects.
Not all consultants focus on medication. We sometimes see a neurologist and sometimes a geriatrician who has Parkinson’s as a special interest. There is a big difference in their approaches, which is actually very helpful as you sometimes see things from a different viewpoint.
My story may or may not be of help but I feel I should share my experience in case something helps.
Prior to my diagnosis I suffered from spells of depression/anxiety and had been diagnosed with GAD. Counselling and medication had little effect.I also suffered from obsessive/compulsive behaviour that had become quite difficult to deal with.
I was diagnosed with PD Jan 2017 and put on Sinimet. At every subsequent consultation they raised my dosage until I was on 5 tablets a day a year later. Around the same time as I started on 5 a day I began to experience increased anxiety and had a panic attack in Jan 2018. For reasons I wont go into here, in February 2018 I started on a ketogenic diet. A few weeks in I began to feel positive benefits but my anxiety started to increase also.By the end of March I was suffering from deep anxiety (scared of almost everything) that became so bad that I began to think about suicide as a way out. In early April I suffered a nervous breakdown and my wife had to call on the emergency mental health team as she was so concerned.
9 months later I am well. I do not suffer from anxiety and obsessive/compulsive behaviours that I have suffered from for many years are a thing of the past. I have cut the amount of Sinimet I take to 2 tablets a day and often (either by accident or by choice) take less. I am still following a ketogenic diet and enjoying better physical and mental health than I have had for some time. It may just be me but there was clearly things (presumably, carbohydrates) in my previous (fairly standard) diet that were
toxic to me and had a negative effect on my mental health. It is clear to me that the amount of L-dopa I was prescribed was actually making things worse. My experience may be unique but if it helps anyone else than that is good as I have been to hell and back and know how it feels.
Following onto my earlier post - my experience makes sense if you understand that excess amounts of dopamine (or excess in relation to inhibitory neurotransmitters, like GABA) can drive anxiety. It is my belief that my change in diet restored a balance that had been awry for many years.
Firstly I have to commend the people who have replied on this post and given such sound advice. I am the carer of my husband who has had PD for 25 years. I know everyone is different with PD but we have learnt things over the years. Firstly, a PD nurse is far more knowledgeable than a doctor. We found out that protein affects the effacacy of PD drugs from a PD nurse.They are dealing solely with PD and all the useful information we have ever had has come from a PD nurse or forum. We are fortunate enough to have young newly trained nurses who immediately advised my husband to reduce his meds and he was much better for it. My husband was taking Madopar aswell as Sinemet but I noticed that Madopar made him withdraw into himself and when he stopped taking it he also realised he was not having to go to the toilet as often so he just takes Sinemet Cr and normal Sinemet. In the morning first thing he takes one Selegiline. He swears by this. He has taken this for 24 years and believes that this may be the reason he has never suffered depression.
I had to take an anti depressant a few years back to deal with the strain of being a carer but after about four weeks I started to feel anxious. One night this became unbearable and I had to have a couple of brandies to calm down. I looked at the instructions inside the packet and amongst the side affects of the anti depressants was anxiety. I stopped taking them and immediately felt better.
If you have a PD nurse I would talk to her. I am only speaking from our experience but I really hope it helps.
Hi my husband has pd for 17 years and as you say the man we married is not very often with us which is so sad. A lot you say I go threw but no suicide attempts thank heaven for that. For the past three years he is not able to be left alone as so shaky plus dementia so Monday to Saturday it’s 24/7 in the house with no break Saturday afternoon I meet up with a dear friend that’s my life line.hubby has no medication in day as tables after a long while made him have to much pain this is we’re quitapine has helped first thing in morning and at five pm I fit a pump to help evening and sleep which helps most day’s but if panicking then nothing works at all. So sadly us Carers do a lot and learn a lot about pd and that it’s different for everyone I always think if it was the other way round I know he would have looked after me 24/7 so YOU take care of yourself as best you can and keep looking on here it helps xxx
G5carer I am from America. Parkinson’s does effect us all differently. I have Parkinson’s. Here in the USA insurance controls health care. But I can go to a different doctor for a second opinion. I really feel that you really care about your husband. From your post you are at wits end.
You have stressed the worst symptoms your husband has are emotional, change in personality, not being rational.
To be honest to you I am no doctor. But I exercise and associate with many fellow PDers.(male and Female. Most of us have a greater degree of physical symptoms. In fact yes we do have depression, anxiety, apathy) But IMO your husband seems to lack symptoms of bad gate,balance, muscle cramps,tremor,stiff neck and shoulders,bent posture.
One thing about doctors and most people in general in order to access a health problem there needs to be calmness. Your husband needs you to be calm for he can not.
IMO again a doctor that hands you pills and says see you in 4 months is a poor professional.
Please don’t be angry at me. But I think a second opinion is in order. I feel if you get a new doctor you can calm down and give a clear picture of your husbands symptoms.I hope this helps. Tom
Hello and thank you all for your calm, informative and helpful responses - still being re read and taken in.
What I find so difficult is that since dx October 2017 when he was prescribed Pramipexole - then Madopar which each caused similar extreme symptoms leading to 2x suicide attempts
January 2018 Madopar stopped = improvement allowed discharge from psychiatric hospital taking benzodiazepines antipsychotics (quetiapine) and antidepressants = chemical straitjacket.
June 2018 changed from quetiapine to clozapine which caused breathing problems and chest pains so stopped in August 2018 - now Lyrica + 2 antidepressants
One good thing I would say is that at last he seems to be able to think more clearly since stopping antipsychotics August 2018 but this has taken 5 months to change - at one stage I really thought he had dementia.
His loss of personality emotion expression etc happened from February 2015 after taking antipsychotics not after 10+ years post dx and PD medication. This is four years ago…
I realise that being calm would be helpful but I have frequent panic attacks and only just function by dissociating from the situation. The trauma of the suicide attempts and everything that happened alongside has not faded and I feel anxious just being with him. My trust and confidence in all the medical contacts he has had so far is blown and if initial standard PD medication causes such an extreme reaction what can we hope for?
Hi,
I’ve just been reading your harrowing account of your life with your partner and having to cope with his PD. It’s an eye opener to hear what it is like for the person who is left to look after the Parkinson’s sufferer and it certainly made me sit up and think. I realise how fortunate I am that my PD, after eight years, still shows only very mild signs of deterioration.
I don’t quite know what advice I can give you really. I think you would definitely benefit from seeking some outside professional help here, on how to deal with all this trauma. I bet you feel like running away from the whole thing!
I for one wouldn’t blame you!
I hope you find some comfort from other people who have responded to you. I know I did.
There’s a lot of help available out there…grab it all, it may just give you the answer.
Rhona
I am getting a clearer sense of what you a going through. You have had multiple doctors working with your husband.
The care givers have more to deal with than us parkies people. They are saints.
I have watched many you tube segments from expert UK parkinson’s doctors.
Rhona advice to get some counseling for yourself seems very wise.
I would think your UK parkinson’s research center should be interested in your husbands case. Maybe contact them.
You are doing the BEST ANYONE could for your husband! That is obvious!
Such a huge gap between theory and practise.
I was told nothing about parkinsonism or other drug-induced movement disorders. I remember joking with the people at the dental hospital that the next time I saw a neurologist I was going to wear a t-shirt with “A duty of candour” on the front and “And pigs might fly” on the back.
They were not joking when they warned me I would get discontinued…
https://www.nice.org.uk/guidance/ng71/chapter/Recommendations
Parkinson’s disease in adults NICE guideline [NG71] Published date: July 2017
People have the right to be involved in discussions and make informed decisions about their care,
Communication with people with Parkinson’s disease should aim towards empowering them to participate in judgements and choices about their own care.
In discussions, aim to achieve a balance between providing honest, realistic information about the condition and promoting a feeling of optimism.
Before starting treatment for people with Parkinson’s disease, discuss: the potential benefits and harms of the different drug classes
http://www.urantiagaia.org/eng/mental/psydrug/psychiatry_drug_problem6.html
Your Drug May Be Your Problem How and Why to Stop Taking Psychiatric Medications Revised and updated edition, 2007 P. R. Breggin, D.Cohen,
Time and again, we are shocked at how little doctors tell their patients about the psychiatric drugs that they so freely prescribe for them. Most people are fumbling in the dark when it comes to knowing about the actual effects and hazards of these mind-altering drugs.
Ultimately, even medical and psychiatric textbooks are written by drug advocates who often minimize or ignore important and even dangerous adverse drug reactions. Only a few professionals become expert on the subject of medications without working with and for drug companies.
The failure of doctors to impart information stems partly from ignorance and partly from their attitudes toward their patients. Many doctors do not feel obliged to "tell patients everything". Instead, they control the flow of information in order to achieve certain ends, such as encouraging the acceptance of treatment.
Medical education instills and reinforces this authoritarianism in young physicians. From the earliest stages of their clinical work, they must make life and death decisions, many of which are beyond their level of maturity, experience, or knowledge. If only to hide their personal insecurities about shouldering so much responsibility doctors can become arrogant.
Further encouraging their paternalistic attitudes is the almost priestly role they play within society.
Finally some doctors purposely withhold information about the dangers of drugs for fear that their patients will refuse to take them. Because they believe that the patients need the medication, they prescribe it without providing sufficient information for the patients to make an independent decision.
This unethical and potentially illegal practice is especially common among psychiatrists, many of whom harbor a patronizing attitude toward patients.
http://psychrights.org/research/digest/InformedConsent/DCohenmodelinformedconsentform.htm
A Model Consent Form for Psychiatric Drug Treatment by David Cohen, Ph.D., and David Jacobs, Ph.D.Journal of Humanistic Psychology, Winter 2000
I guess I am Lucky. All my doctors work together in that they before new medicine is added they are notified. Any drug I get at the pharmacy they look for bad interaction of drugs. Our rules are stricter here. New drugs take years to be released for use.
But at the same time many drugs that other countries approve help people.
Kinda of a catch 22. When we are ill there comes a time we are willing to take a chance on something that will help. PD is different for all of us.
I have told this story on here before but I think it bears repetition. One hospital consultant, a movement disorder specialist, on the second time he met me ( about 10 mins each time) wanted to increase my 3 sinemet a day to 3 sinemet plus a day and wanted to start me on a 9 month course of anti depressants. I said wasn’t that rather a lot to change in one go, he said I am the doctor you are the patient. I did not take the anti depressants and got thrown off his list for ’ argumentative non- cooperation with medical advice’
On the one hand, lucky to get away from him, on the other hand every new professional I meet knows that I am argumentative and don’t take advice.