Chapter 2 - Misdiagnosis

Chapter 2 - Misdiagnosis

Although, looking back we think there may have been some harbingers of " Michael's " arrival, he certainly made his presence felt one Sunday morning in August 2011. Now I am usually up with the larks on a Sunday morning. I go and get the morning papers, make breakfast and take it to Laraine in bed as I have done almost every morning for the last twenty four years. That Sunday morning was different. Laraine woke before me about 7.45 am. According to her I normally sleep with a smile on my face but that morning, not only was she surprised that I was still asleep she was startled by the pained expression that I bore. She immediately sensed something was wrong and nudged me awake. From them she said it was like looking at a scene from a horror movie where the psychopath pretends to be asleep and when the victim turns away the psycho opens his eyes. That is she says how I looked at her. I honestly cannot remember exactly what or how i was feeling at that moment other than slightly disembodied but I know that I felt terrible, terrible, terrible and told Laraine that unless she got me help that day I thought I would kill myself. Laraine had never heard me say anything like that before. She could tell I was deadly serious and that something was very wrong. She immediately called NHS Direct and spent about 15 minutes on the phone to them. She explained what I had said and that by now I was shaking from head to foot. She also told them that I had been attending our doctor recently due to the stress I had been under who had recently changed the antidepressants that had been prescribed and that I had been a bit nauseous a week or so ago. Accordingly NHS direct had out this episode down to a bad reaction to the new medication. Laraine wasn't happy with this at all and insisted that I be seen by a doctor that day. So we were sent to the local out of hours doctor at a nearby health centre. By the time that we got there I was shaking so badly that Laraine had to almost carry me in. Luckily one of the nurses spotted our struggle and helped me onto a bed in a side room. By this time I was hyperventilating and the nurse thought that I was fitting. So he gave Laraine a paper bag for me to breathe into and he sprinted off to get a doctor. When the doctor arrived he told the nurse to give me some valium, which he did and which calmed me down such that I was able to give a history to the new, young doctor that they had sent in. I basically told him what i told you in chapter one and he put what had happened that morning down to a severe panic attack. However he was concerned about my mental state and threats to self harm so he sent us along to a Mental hospital about ten miles away. I was happy with that as I thought I would be safe there however when we got there, and after waiting for a half hour or so we were told they couldn't see me because I had been receiving treatment for depression by another health authority. I was distraught but they had arranged for me to meet with a crisis team who were waiting for me in another town.

I hate to say this but I was not impressed with the Crisis Team. By the time we got there and I told them what had happened I was absolutely exhausted both mentally and physically. Although I could barely speak I begged them to admit me to hospital. They said I did not needed to go into hospital and wouldn't want to anyway. I begged and begged with them which shocked Laraine as usually I hate the sight of hospitals and here I was, what she described as the " polar opposite " of her husband crying like a child, pleading to be taken into care. She told the crisis team that she thought that this was much more than a panic attack and insisted we see the duty psychiatrist that day. Ok they relented but we would have to go to yet another hospital to see her and we couldn't see her till 4pm. By this time it was about 2.30 and we had had nothing to eat that day so before going to this other hospital we stopped at a cafe in a nearby supermarket to get something to eat. I could only manage a bite of a sandwich and a sip of tea.

Can't say we were really impressed with the psychiatrist either. Looking back there was clearly something physical going on which we believe she as a doctor should have recognised or at least investigated further. However she was willing to admit me but the only bed she had available was in a hospital in Aberdeen some two hundred odd miles away. Well that wasn't an option. So what she decided was that she would give Laraine some Valium which she was to give me if she felt I needed it to keep me calm and that I would be visited by the crisis team each day, who would counsel me until I felt better. So we were packed off home with a vial of seven Valium ( we still have five of these ) to wait for the crisis team coming the next day. By the time we got home that day I could barely walk or talk but Laraine gave me one of the valium and put me to bed and totally exhausted I fell asleep.

The next day was Monday and the crisis team were to come at one. That morning i could barely walk and Laraine had to help me to go to the toilet. I wouldn't eat any breakfast. Laraine had to go to work but promised she would be back to meet with the crisis team. Before reluctantly she left she gave me another Valium and I slept till she came back just after midday. It was only months later that she told me that she feared I would be dead when she Got back. Well I wasn't dead but could hardly move. She had to help me into the shower and get me dressed. She almost had to carry me downstairs and plonk me in a chair to wait for the crisis team, where I sat shaking and jerking uncontrollably. The crisis team arrived promptly at one. Basically they told me how inconvenient it would be if I took my own life and if I would just relax the shaking would stop. Laraine was watching and listening from the side and again relayed how much this was unlike me and that she thought that there was something much more than a panic attack going on. They disagreed they said that they had seen this sort of thing many times but if she wasnt happy to call our GP. Well she want happy so she did this and told our doctor that she thought I might have had or was having a stroke but that she did not want to waste anyone's time if she was wrong and asked that our GP take a look at me. Ten minutes later I was in front of out GP and five minutes later on my way to Glasgow Royal Infirmary with a letter saying my doctor suspected than I had had a stroke. At A&E Laraine had to prop me up against a wall and leave me there whilst she parked the car. porters and nurses walked past me as i stood there hardly able to keep myself from slumping to the ground and ignored Laraine as she struggled to carry me in.

Once in casualty, although Laraine gave the receptionist the letter form my doctor which said he suspected that I had had a cerebral vascular accident they seemed to be in no hurry to see me. We were kept sitting in the waiting room for what seemed like hours. What we did not know until some weeks later there was a person that we knew in the waiting area at the time. But we were too distracted by what was going on to notice and she was so shocked by my appearance that she didn't want to come over to chat. However she did say later that I " looked like an old man with Parkinson's ". Eventually though I was seen and thoroughly checked over by one of the young doctors who also thought I'd had a stroke. He reported this to his senior who thought the same but they wanted ct scan of my head to confirm this. The ct scan however did not show that I'd had a stroke but I was admitted to the main hospital for further tests. A few days later I was told by one of the consultants that I had probably had a minor stroke and that the shaking which was now persistent in my right arm would subside through time. I was kept in for a few days and then discharged to wait for them sending me out word of an appointment at the stroke clinic. So much for a panic attack eh ?

Once home things didn't improve. The shaking got worse and although I had been told to keep active I was so tired that in could barely get out of my chair. I had no appetite and couldn't face food. My weight plummeted from my usual thirteen stone seven to ten stone six. I looked and shook like a bag of bones. I felt like an old man. A very old man. I'm fact we we're visited one day by my mother's elderly cousin from America Jean and her husband Floyd. Floyd is ninety and looked far better than I did. I didn't know it then but both my mother and our relatives told Laraine how shocked they had been at my appearance that day. I should have guessed though when the conversation would stop when I entered the room.

As the weeks passes the shaking continued and worse still I started to have a lot of falls. One minute I would be upright and the next flat out on the ground. On one particular occasion Laraine and I were out shopping. Now Laraine could not walk at the pace at which I was going and strode ahead to unlock the car. However she had only taken a few steps when she heard a car horn blare and people shouting. She turned to see me lying in the road with a car swerving to avoid hitting me and two young boys picking me up. The falls continued with neighbours often having to pick me up out of their gardens or bushes and take me home. Laraine always put these falls down to my drinking. No matter how much I tried to convince her that I was not drunk she wouldn't believe me and this was starting to become a bone of contention between us.

As I said I don't get to see our grandchildren but Laraine does if only on a limited basis. She has a day off on a Wednesday and usually sees them then for a couple of hours. One wednesday she came in after seeing the kids to find me slumped in the chair with an open can of lager beside me on the table. I honestly had hardly taken a sip from it but l know I must have looked drunk. Laraine went scripto. Needless to say an arguement ensued. I stood up and immediately went crashing to the ground. I managed to struggle to my feet and insisted that I was going to take the dog out for a walk. Laraine told me not to be stupid and even the dog looked a bit reluctant to go out with me. However I was determined and headed towards the back door with the dog reluctantly in tow. I got as far as putting one foot out of the door and fell heavily onto the stone path, banging my head on the wall as I went down. It took Laraine a good fifteen minutes to get me up and back into the house and onto a kitchen chair. I could barely speak but begged Laraine to go and get one of our neighbours Marie who lived opposite and who is a stroke nurse. Marie had been one of the neighbours who had picked me up before when i fell and who had told me to call on her if I needed her. Laraine agreed to get her but not until she got me into the lounge as she didn't want to leave me swaying on the kitchen chair in case I fell off and injured myself on the tiled floor. So it took her another fifteen minutes to get me the short distance from the kitchen to the lounge where, unable to bare my weight any longer Laraine let me drop onto my knees and somehow managed to prop me up against the chair. What seemed like an age later Laraine came back with Marie. Marie said that she thought my stroke had extended and told Laraine to phone 999 immediately. Fifteen minutes later the house seemed to be filled with paramedics coming at me from all angles. They were asking me questions that I couldn't answer, my head spun and I was very confused. The consensus was that my stroke had extended and I was bundled into the ambulance and taken to the nearby Monklands hospital. Laraine telephoned our youngest daughter to tell her what had happened and agreed to meet her at the hospital. I can't really remember what was said or what happened that night in casualty but what I do know is they thought that I was drunk. About two hours after I arrived Laraine and Lauren who were in the waiting area were horrified to see me stagger out and tell them I had been discharged. In fact Laraine did not believe me. She thought that in my confused state I had simply wandered out so insisted that she speak to a doctor. A few minutes later we were herded into a side room where Laraine tried to explain to a vey arrogant young doctor that I previously had a stroke and by my collapse earlier it was thought that this had been extended. The doctor ignored her and turned to me and asked what I had had to drink that day. I tried to tell him that I had only drank a sip of beer. Laraine also told him about the near full can of beer that she had found me with and that she did not think I was drunk. She asked if they had carried out a ct scan but the doctor was very dismissive and said that there had been no need to do this as he thought nothing "bad" had happened to me that night. He was not admitting me and at that spun on his heels and walked out. By now however both Laraine and Lauren thought I had been drinking and were on my case.

15 Replies

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  • What a horrible set of experiences. I am totally speechless and don't know exactly what to say except God bless you and I hope our Administrator JON STAMFORD has some suggestions for you. No living being should have t go through what you have, under ANY CIRCUMSTANCES

  • :-)HI AL

    GOOD TO C U BACK ON THE SITE BUT WHAT A STORY!!

    TERRIBLE

    LOL jiLL

  • Wait till you read the rest

  • I can well believe all this and the NHS. I was a senior nurse in the NHS for many years

    and always thought good of it till I was ill. Then I found out in 1999 how bad it all was. Arrogant doctors.

    A very uncaring mental team. Doctors who told blatant lies. Psychiatrists who themselves should have been certified (I have never seen one sane yet)

    The mainstay drug of the doctors when anyone is feeling like you is slam in the Valium.

    I had a reaction to a drug Prozac in 1999 which caused all my problems, after ten days on it I had fits ?a stroke they put so much Valium into me I cant remember two weeks of my life.

    They told my partner the problems would go away after four days, they did not, they stayed with me for five years Dyskenesia. I was told it was all in the mind. In 2004 I had a bad episode of constant sudden mouth swelling The hospital cancelled (not me) 13 appointments to be investigated.

    Eventually going into hospital I was admitted to a ward which was over crowded & filthy, a notice above the door warning of an infection on the ward. A ward clerk who gestured to me as if I was a dog, she never spoke a word. I waited on that ward ages no one even came to tell to get into a bed, in the end I came home.

    This experience has only strenghtened my resolve not to rely on doctors.

    You AL just hang in there, I promise it will all come right for you eventually

    just take courage and believe in yourself. you are the only one who can get yourself back to some reasonable fitness.

    I feel so bad about your treatment, almost ashamed I could call myself a nurse.

    I was trained in the old school, and care meant just that.

    I am sorry

    but like I said we are all here for you anytime.

  • i have read the rest first ...

  • but how did you get to dx'd as a pwp ?

  • A Dat Scan.

  • I hate doctors who think they know it all and do not listen to the patient and their families.

  • Good God how horrible for you. Damn the doctors who think they know everything! :-( :-(

  • Just Part of life , now over it and just getting on with things,

    got up to chapter 10 now and hope to have it finnished early 2013.

    I done it ,just so i will have a record of all the crap i had to deal with in the early days of PD and hope it will let some people see that we are not monsters or drunks , we just shake a bit ,stagger and fall

    love

    Al

    xx

  • what a horrible nightmare you went thru. i am so sorry that NO ONE believed you..

    what a lonely feeling for you. totally isolated. and a bunch of arrogant dr's that didn't know how to shine there own shoes. they had better go back to school. one that specializes in parkinson's . what does their oath say? first do no harm. but it is a difficult disease to diagnose i'm told. there first clue was that when i walked i didn't move my arms. they just hung by my sides. then came the head MRI, and that told the whole story. i have been lucky that mine has been a slow progression. i'm 78 now, so maybe it will wait until i'm dead before it reaches full steam.

    thank you for sharing your story.

  • Thanks,

    Was a nightmare at the time , i am over it now , my right arm is still when i walk .

    i am 53 years old and still have a lot of high jinks to get up to

    Al

    xx

  • it sounds like you have a good attitude now parke-AL. but it took a long time to get to that point. "they say it's not fatal, sometimes you wish it were. have you lost a lot of weight also? with no explanation? but you are right, at only 53 you have a lot of time left to get in the hi-jinks. you will get there. i use carb-levo dopa and it helps to keep me on my feet.

    but before that i did a lot of falling. not with the carb levo-dopa. only when they change my meds, do i start falling a lot.

    good luck to you, parke-AL. hope you will have many hi-jinks.

  • thanks, might try some stand up comedy , that would be funny,

    Al

    XX

  • does parkinson's affect different people in different ways? parke-AL?

    like some lose weight unexplainably , others not . some shake more then others etc?

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