I want to be (the man I once was)

This beautiful country of ours is a green and pleasant land because of the weather: a bit of rain here, a bit of sun there, not too hot and not too cold. All this mixes up to provide a temperate climate ideal for growing plants and at this time of year gardens and countryside burst into a riot of colour. Perfect to lift one’s mood as the harbinger of summer appears once more.

Sunshine pours all over the fields as I walk my dog but in the distance I can see dark, ominous clouds, bulging with moisture ready to turn the day into darkness and deposit a deluge of water onto the unprepared. I am lucky, I can see the storm coming and make a hasty retreat into the comfort of my home.

But, I could not see my own storm approaching a few months ago as depression wrapped its cloak of evil around me. It appeared so sudden and all covering that very little light could penetrate from outside or escape from within. I had never felt so alone, so sad and so pessimistic. I had been plunged without warning into the uncharted waters of despair so deep that I couldn’t see where safety lie.

When I last wrote for this forum (one year ago) I was taking Pramipexole to control the symptoms of PD and had been doing so for five years, steadily increasing the dose up to 3 x 0.7mg per day and all appear good. Except that it wasn’t. I was suffering from narcoleptic sleep episodes in the day time and waking up fully alert at 4am. One minute I was awake, the next asleep and it mattered not what my activity was: asleep in conversation, asleep while working at the computer, (I once woke to find 17 pages if the letter “L” on the screen where I’d nodded off and my nose had hit the keyboard!); even falling asleep standing up. Driving was no exception. I fell asleep at traffic lights and on two occasions my car swerved dangerously across the road. Something had to be done before I either killed myself or killed someone else and I spent the next 10 years in the custody of Her Majesty’s prison service.

So I had no choice but to mention this to the Neurologist who immediately advised me to “refrain from driving” and referred me to the Respiratory and Sleep Support Centre (RSSC) at Papworth hospital. Following tests I was diagnosed with ‘obstructive sleep apnea (OSA) and told that the PD and the soporific effect of Pramipexole would be sufficient to cause my dangerous sleep episodes. First I was given a CPAP (pressurised breathing mask) to wear at night which was designed to pressurise my airway and stop the OSA in it’s tracks. It took six-months to get used to the thing and the first few times I wore it I dreamt I was back in the Fire Service, back firefighting and on one occasion, trapped in a fire in a “BA emergency” in my first nightmare for 40 years.

Meanwhile, back to the neurologist. “Let’s reduce the Pramipexole and start a bit of Sinemet. Take it slowly; gradually reduce the Pramipexole until we find a point at which your sleep improves”. Except it didn’t until it was removed completely and  for one day only I was relieved of the Pramipexole fug: a low-energy, high lethargy sense of being. Like sunlight on a rainy day, my relief was only temporary, as very soon my false hope and false security were strangled by the closing clouds of darkness.

Hindsight is the master of reason. Looking back I realised that I had, along with being Mr Sleep,  become obsessive and compulsive, neither being conducive to happy family life. Always with headphones on, my addiction was music: whether that be playing bass guitar in my band, producing recordings of live music or writing and editing my own songs. I was obsessed and didn’t realise that my addiction was ruling my life. I found my fire service pension disappearing fast as my collection of recording equipment and cables multiplied. Smart new recording equipment and lovely colourful cables in exchange for my hard earned money.

Along with being responsible for sleep disturbance, obsessive and compulsive behaviour,  Pramipexole had an anti-depressant effect that the Sinemet did not have and no sooner than I saw what I had been, I became something completely different. Known for my laid back view of life and my calmness in adversity, I was the last person my happy-go-lucky self would expect to get depression. Add to the mix a smatter of PTSD and the toxic soup was complete.

The first sign that something was wrong was the sudden and uncomfortable increase in my tremor. This in turn led to muscle tensing and pain. This was so bad that I became self-conscious about it and began withdrawing from social events. I was due to attend a presentation evening at my former fire service employers, where I was to receive an award in recognition of 27 years distinguished service, but I couldn’t go; I couldn’t let my former colleagues see me like I was, a shadow of my former self, a shaking wreck of the man I once was. Advised to seek help by my wife I rang the PD nurse. Her advice was that I had to break the cycle of anxiety causing tremor, tremor causing anxiety by seeking a dose of anti-depressants from my GP.

Being trained to NVQ level 7 in investigative practice, a fully qualified fire, accident and discipline investigation officer and authorised enforcer of fire safety legislation, I was used to asking the questions. But my GP saw something no-one else had and probed very deep into my soul. She asked me if I had contemplated suicide and had any plans to kill myself. The answers I gave caused great concern and she immediately prescribed an anti-depressant, referred me to a psychiatrist and put me on weekly appointments to ensure I didn’t act on my dark thoughts.

Depression is invisible, depression is an overwhelming sense of lost hope, low self-esteem, no energy and no desire to live. Everything becomes a challenge. Hygiene, social events, work, rest and play all become impossible as one slips further into an anxiety fuelled ocean of storms. Depression wraps its evil around one’s core like a python suffocating its prey, squeezing the last drops of life from one’s lungs gasping for air.

So here I am now, looking out of the window watching the weather go by, battling my demons whilst angels try to keep me alive.

As I catch my reflection in the window i can see the face of a strange old man staring back at me, his soul gone and his spirit undone. But as I look deep into his eyes, into the very depth of his being, there is a ray of sunlight cutting through the gloom; a small chink of light but an important one.

Now chemically more balanced, I am starting to feel again like the man I once was and hope that the storm passes so that I can be like the quintessential English summer where the clouds break to reveal the beautiful sights, sounds and smells that make those days so special.

Well I have read  this  post and  we  have  travelled  the  same  road  my  friend  I  have  gone  through exactly   the same  turmoil and  fear,  trying  every  drug  ever produced  to  combat  BLACKHEART,   all  gave   only  comparitively short  relief from  the  horrilble  freezing  and  dyskinesia, and the night  terrors,  well  they  started  on  taking my firs  drugs  intake   MADOPAnR  and   c,,,,,,,,  SORRY  CANT  remember  it,  they  turned  me  into  a  sex mad  crazy,, (only  with my  wife  mind  ,  now  it  was  fun  at  first   ,  but  my  Lady  became  a sex  object,,  when  I told  my  specialist   she  immediately  removed  the  CABERGOLINE,  since  withdrawn  I  believe,    retaining  the  MADOPAR,   this   was  in  99,,  and  in  the  period  from  then  to  now  I have  tried  everything  but  without  much   improvement  until  DuODOPA   ,  This  Device  was engineered  into  my  physiology in  2013,  march  2013  and  has  worked  well  though  a  estimated 5  to  7   years of   improvements  is  coming  closer  and  there are  no plans  or anything  apart  from  DBS  which  my  brain  is  not  suitable  for  so as  the    Ddopa  has  been  my  lifeline  for  4yrs  or  so,  I am  worried,I went  through OCD   buying  £1000snds  of  die cast  models  I  just could  not   stop,,  ok  now  but  the  cause  of  many  arguments the  sexuality thing  still  haunted  me  but  using  my  own  technique I SHOCKED  MY  SELF  SO   BADLY  unfortunately  my wife  had  to  be  involved and  the  result  worked FEDS  OWN  AVERSION  THERAPY, anyway  we  are  on  level  ground   now  and  the  problem is  no  longer  well  a  problem, unfortunately  my  sense of smell  and taste  is   destroyedng haul  and  the  load  gets  heavier  week  by  week,  I was  dxd  with  LEAKEMIA  LAST  WEEK,  so  it  will  join  the  long  list  of  challengers  attempting  to  take  me  out unsuccessfully   PD,  PC NPS, TWO PDISCS  (AGONY),  but  as you  Sir  have done  you  just   bend  into  heavy  weather  and  plough  onward  ever  onward BeElveB


                                         Kind  Regards FED4





Hi Fed 4, Prof here I have just read your article and was drawn to the part about your hyper sexuality problem. I have been feeling the same way for over a year, but my wife has said that she has no interest in sex any longer and will not partake in intercourse with me. Consequently, I have resorted to watching porno movies on U Tube, which my wife finds disgusting and says that I am not the same man that she married twenty years ago. Even I feel dirty and unclean at the thought of watching them to get any sexual release. At present I am taking Sinemet tabs for my PD, and I believe the my problem is a side effect of the medication. I live in Thailand and my neurologist speaks limited English so it is difficult trying to explain this problem to him and getting him to understand what I am going through. What would you advise me to do?