Hypersexuality?? Other compulsive behaviors?

[srarndt]

Found this online, it is a pretty good watch:

youtube.com/watch?v=g6kicKV...(Not working as expected?)

[Danny2401]

Good tape I took part in research studies for impulsive-compulsive behaviours, and the results, are in, if you check my acccount or blog on this site, I have also had a letter which informed me that the results were published in BRAIN.

at brain.oxfordjournals.org.

bye

Danny

[Danny2401]

MY LIFE WITH PARKINSON’S.

Hi, my name is Danny (Daniel) Wilson, I hope to tell my story and I will start with today, Independence Day, The reason I decided to write this is because I have Parkinson’s disease, and he has mine, you are meant to laugh, well I found it funny when I first heard Groucho Marx crack it. Parkinson’s disease or (P.D. from now on). Well P.D. is no joke, in fact it is one messed up disease.

I know I‘m not the greatest author, and my choice of some words, might not be best, that’s how I feel. And I hope to get my feelings true and straight to the point, I’m using Word to write this and already the red and green underlines are stacking up, so I’m not writing for grammar awards, I just had a thought, I would like to help my fellow P.D. sufferers with some advice about P.D. Because most people Google P.D. and you get the good with the bad.

Your family Doctor is not very tuned into P.D. And I once had a neurologist confess that I knew more about P.D. in younger people, (under 50’s) than he did, as he was used to people a lot older having P.D. And of course I agreed.

I’m not going to bore you with details and numbers or statistics because you can get all the formal information from any proper P.D. sites. What I’m going to write about is my life with P.D. and my feelings and to explain the shit my head or brain had to juggle with.

Like most of my friends with P.D. I got my first twinge in my right bicep muscle, while doing press ups, trying to fight the battle of the bulge. Which I was losing, this was in August 1999, having been born on the 24/01/1955, and I was 44 which most people thought was young to have P.D. but I have learnt since there is no age this horrible disease is safe from. I had done the running around like a headless chicken from my Doctor, to all kinds of physiotherapists, Herbalists, quacks on and of the internet. You name it and I will have a bet I have got the T-shirt.

I downloaded books with the magical cures, I paid good money for bad information, and alas there are a lot of sickos, who would sell you all kinds of weird and wonderful cures, believe me, I have been there. From August 1999 to May 2000, I had more pains and aches, the worse being a pain in the middle of my shoulder blades, that I can only describe like someone had stuck a knife in my back and hit a nerve. The pain stopped me from sleeping, anyway I seen a neurologist in May 2000, and he confirmed I had P.D. It was like a bolt was shot into my brain, I felt like crying, because I didn’t know about P.D. then. But I soon caught up but even the internet did not fill in all the questions racing through my head.

Why me, I was a hard worker all my life, married to the girl of my dreams, 2 cracking kids, everything was going good for me. I left Belfast at age 18 in 1973 for London, and England give me what I wanted with hard work and a bit of luck; I was a very happy bunny. I was a Hod carrier to 1986, good honest graft, opened a video come DVD and games shop which was a good earner all the way to 2004 when my P.D. decided to play games with my balance, sold our shop, and went into the property game, fingers crossed all good so far.

While the years ticked by from 1999 to 2011, I must have tried every P.D. drug, again I won’t bore you with names, for every drug there is the good side, the pain relief, the shaking stopped for a while, the stiffness eased, but the bad side has just as many faults, some you see others you don’t be aware of mood and impulsive or compulsive behaviours, this could mean a person who has never gambled being addicted to gambling. If it makes you happy then you can have a behaviour problem with it, now follows a list but I’m sure every person taking P.D. drugs could add to it, hyper sexuality, sex mad, really hyper,( may be it wasn’t all that bad) compulsive buying, E.G. I would buy anything of the TV channels, from coats all sizes, all colours; you name it I bought it. jealousy, I was bordering on mental, it was a very trying time for my wife Mary, eating, I was only 8 stone now look at me, then I started gambling, a funny thing was I was very lucky, character, paranoia, Sudoku, crosswords, any game, any puzzle, computer, in fact if you get pleasure from it, just beware, I know of a P.D. friend and he lost his house to gambling, and before taking the P.D, medication, he had not been inside a bookies.

And the 2 things I hate the most Restless legs and sleep or the lack of sleep, I could have gone mad, sometimes I think I am, I can’t find a comfortable position in bed, no matter how tired, even taking sleeping tablets, I just bounce of the walls, and pull and sway on every door in the house, their hinges are broken. I have described Restless legs like your legs want to Irish dance and you want to sleep. Funny it’s not, I can’t sit down for a minute, it feels like ants inside your legs, but worse. I also would like to warn P.D. sufferers when in bed for a while, you have cramps due to lack of movement, I honestly believe it can also lead to clots, I can only tell what I have experienced in August 2009, I woke up at 9 o’clock and I could not breathe and I was really shaking, and gasping for air. I phoned 999 and was told to open my front door and to sit down, away from the door, I don’t remember anything else, I passed out, I was almost dead, as I had 2 clots in my lungs, and my oxygen level was very low, My daughter and son were rang from the A and E, they were informed what had happened and told to warn our family that I was very ill. I was in a coma for a week, along with the clots, pneumonia had set in, and I was in hospital for 3 weeks. All I can say about the 2nd week, my mind went on a holiday to Disneyland, I had dreamlike experiences , I was as mad as a March hare, At the end of the 2nd week I was sitting in bed and collapsed on to the floor like a rag doll, the patient facing, said I just slid down and cut my head on the floor, I have no recollection of the seizure, over the next week, I was witnessed having 6 more seizures, the only thing I can recall was as if I was wakening up from one of my dream like tales, I have no thoughts of the fits starting, I was diagnosed epileptic, I think I had more fits than was witnessed as I can remember coming out, as I often came to with a very wet shirt from drooling, and a new story to tell, I was released from hospital on the Saturday and within 4 hours, I had 2 fits and back to hospital for 3 days more. I put this episode down to the coming together of all the different drugs, the coma and shock. I have not taken sleeping tablets since the 3 weeks in hospital, as I believe the non movement in bed, from taking 2 sleeping tablets the night before my episode had something to do with my illness.

I know nobody likes the next subject, and I know no one admits to it, but wetting yourself at home is really sad, but when it happens while you are out, again from my own experience, I was in Hammersmith hospital doing a research trial, and I had to be scanned for a long period , too long, I had my clothes on, as it was a brain scan, time was short as the scanner was mega busy, I told the Doctors that I needed a toilet break but they said they were nearly finished, not nearly enough for me, I wet all my clothes, 2 female Doctors and 1 male, they were sorry but nowhere near as sorry as me, they gave me a track suit that would have fit King Kong, lucky I was going home in a mini car,( I leave it to the reader, nothing I could say, could describe how low I felt). I have spoken to P.D. friends and believe me, as bad as my ordeal was, I was lucky, the stories they told, would make a statue cry. In our P. D. branch there are a lot of experienced people patients and carers, no matter what you are thinking, we have also had the same thoughts so ask, we don’t care what you ask, we will help, and in fact we care a lot.

I ask my daughter, Danielle to read my notes and I thought she give the ending I needed in an Email, I have just added my story, but I think she tells it better. Also I took her advice.

Hi Dad,

It's great and totally you!!!! I love that it reads as you'd say it... it's the way you tell them! I do think you should break it into paragraphs to make it easier for people to read as it's quite a lot in one go.

I think at the end you should say a little about how you get over the likes of the brain scan incident - at the time it really upset you but at the end of the day you had to have the strength to say f**k it. I also think you should add the bit about when you were using both sticks and the doctor told you didn't need to and you had to admit to yourself and your family that it was easier for people to see you with sticks than question if you were drunk/mad etc. Again you had to think "I can do this" and with P.D you need the strength to not let people looking or wondering effect your spirit or you getting out in the world!

Your strength is you keep rolling with the punches and you stay mentally strong and that drives you to be physically strong - say that you still do weights as you think if you can lift your weight you're less vulnerable.... I think all that stuff helps the reader to understand you a little better and how you deal with this.

I like the advice at the end!!

Love you Pops and well done.

Add a weenie bit more and I'm very happy to read it again.

My weenie bit more is that my neurologist said to me, that not to let the walking sticks, become a crutch, that you hide behind, I have a strong family, I couldn’t change my ways, there is no hiding place from P.D. It kicks you when you’re down; it even kicks you when you’re up, but as the Life of Brian’s song goes “always look on the bright side of life” and I WILL.

My older brother Barney, who also had P.D. and died from a type of Parkinson’s dementia, was a boxer, but he passed on to me, the wise words KEEP THROWING PUNCHES, and I won’t give in without a fight. I will see my grandchildren.

Danielle what do you think?

Sean was one of my neurologists.

Hi Danny,

Great to hear from you, and I hope all's well.

Thanks for the reminder about this C4 show next week - I'm looking forward to watching it.

Well done, and congratulations on your personal piece about your PD experiences. I know it can be very tough to talk about these things, particularly the "non-motor" problems that are so often ignored by doctors and carers. I remember well your horrible experience during the Hammersmith scan - I felt so badly for you, and both respected and cursed your bravery in trying to persevere with the scan until the bitter end. This is probably a reflection of a stubborn Belfast streak in you!

I hope all the gang are keeping well. Do you get back to Belfast much now?

Keep throwing punches, not that I'd ever doubt that you wouldn't.

All the best

Sean

Dr Sean O'Sullivan, PhD

Consultant Neurologist

Frimley Park Hospital NHS Foundation Trust

Honorary Consultant Neurologist

St George's Hospital London NHS Trust

From: Danny Wilson [[e-mail]] Parkinson’s

[Parkinson_Schmarkinson]

Wow! What a testimony. Thank you very much.

[Parkinson_Schmarkinson]

Video is also very useful.

I did have a brush with hypersexuality, mostly just unwanted and compulsive fantasies of the sort I'd much prefer nobody to know about.

[PatV]

I had it too (hypersexuality) when I was on Requip. I got no sleep for months. Thanks all for your testimony. I wish all neuro doctors could be made to read all of these! My son-in-law is from Dublin so I appreciate the humor and I whinge as I please or not.

[Hikoi]

Thanks Danny, and sounds like you have a great support team around you.