Hello fellow Parkinsons peoples


#1

Hi everyone, I am a 64 year old whose eldest brother had the most extreme form of the disease, sadly he is no longer with us, in yet I was told that this disease is not hereditary but I am the proof of the pudding it is.  Prior to being diagnosed I had been suffering with tremors since my teens and this was established as Essential Tremor, it was then diagnosed as Dystonic Tremor.  What triggered my Parkinsons ?  It was a groin hernea operation and it was as instant as flipping a light switch on, my right leg/foot turned in and my tremor had become quite violent.  Up until this operation I had taken numerous tablets to control the tremors, none of these worked.  I was then put forward as a candidate for DBS, I then went through various scans before being diagnosed with the disease.  Once I was diagnosed Parkinsons the Consultant would not hear of the fact that I had another tremor that it was Parkinsons, how wrong they were.  I had the DBS done in September 2013 and it was instant but I still had the Dystonic Tremor which I still have.  Once diagnosed I had to give up my job as a Lorry Driver of the 44 tonne variety and was Medically Retired or Mentally Retarded as I put it to show I have a sense f humour.  Anyone on here who gets the opportunity to be offered the DBS should go for it with both hands, yes it is a daunting operation, I was under for seven hours and had mine done at Addenbrookes, Cambridge.  I am now living in the South West and come under Southmead Hospital at Bristol, Dr Woan is my consultant.  Although I have had an appointment at Southmead I only saw Dr Woan from a distance and wasn't introduced to him but was dealt with by one of his under Doctors and back up staff.  My battery was originally set to last five years but after three years I was asked to check my battery using the remote control every two weeks as some batteries were not lasting the full term.  


#2

Hi cruisecontroller,

An interesting input from you.

The question of a hereditary link with PD is,  as I understand it, still being researched and the thinking is that some forms of the disease may have a hereditary element, particularly  early onset.

I was diagnosed with PD six years ago at the age of 73. There has been a significant deterioration in my condition since then but I’m still fighting and my cognitive skills are still good.

My sister was diagnosed with PD (aged 58) fifteen years ago. Her deterioration has been a lot slower. Neither of my parents had PD as far as is known, but two maternal aunts had PD, albeit in very old age.

My identical twin brother (so dear to me) died suddenly two years ago, after a massive bleed to the brain caused by CAA, a disease caused by rogue proteins softening and weakening brain tissue. PD as I understand it, is rogue protein related but has absolutely no link to CAA.

One link  I have been questioned about  (I’m a volunteer for a study group) is contact with crop sprays. Me and my siblings were brought up in a very rural environment where crop spraying was common and there was then, no legislation or control. Maybe there is a link especially to the developing brain of childhood and youth.

No chance of me having DBS because of my age - 80 next. My PD consultant wants me to go on Tolcapone, three times a day in addition to over thousand mg of Madopar but I am not happy about it, because of the possibility of liver damage associated with Tolcapone. On the guide notes that come with the medicine it also states, ‘do not take if you have symptoms of severe muscle stiffening". I’m trying to find out if that includes dystonia, which I have often and is very painful.

Regards,
Jules77


#3

Jules, you've certainly been through the mill.  My downside is the fact that the Consultants would not hear of me having two tremors and so I am, at the moment stuck with Dystonic Tremor which means when I sit down to watch tv my legs start shaking.  I am fortunate in that I don't get stiffness like other sufferers nor some of the other associated side effects of PD.  I sometimes stumble when negotiating confined spaces and do have a bit of memory lapse in that things I use to be able to bring back to mind instantly take a little longer.   I also tremble when operating knife and fork and cannot abide people standing over/staring at me when signing documents as I get a wobble on and feel self conscious.  I also get this feeling when out at a restaurant and usually go to these places when they aren't busy..