The Dark Years (warning my blogs are not all full of cheer&hope)

I don't know why I write these blogs. I guess it more of a therapy for me to vent my feelings. Parkinson's, I hate that word. I read a lot of hopes for cure, great attitudes and I don't want to bring any one down ..So if you don't want to read a non-positive blog don"t read this. I am here to tell you there is a dark side to pd, that will suck you in if you are not careful. my feeling is my Pd came from the gulf war. I was station at Kuiwait airport with oil wells burning maybe 200 yards away breathing in oil fumes for months..I got out of the marines in 1992 got married bought a new houses new job at the county sheriffs office. I had everything planned out until about year 2000, I was officially told I had Parkinson was around . I was 30, I kind of knew it was coming . I plugged my symptoms to the web every which way and all that would come up was Parkinson. So after seeing every Arabic doctors in my area who keep saying 'no no your to young'. I guess they skip the class of signs and symptoms or didn't buy computer. I was finally diagnosed about 300 miles away at Shans Hospital in Gainesville FL.. It took the doctor there a whole 5 mins of looking at my mri to come to that conclusion. Well I was put on sinemet which at first is great. but by 2004 I was taking that, mirapex which gave hallucination and a hand full of other drugs. I d pass out in a sec at times. I was in a deep deep depression I had a spending addiction sex addiction an anxiety through the roof.. After all I was 35 I thought my life was cut in half I was hoping I would just die in 2005 things got worse I had to retire from a 80,000 year job . I rose through the ranks quickly. which by now it would probably be 100,000 and a huge retirement just waiting until I turned 55. Was cut down to 1500 a month I lost my home got divorced lost everything I owned. 2007 thing got worse my social security was taken away when they did in invest on me and because I wasn't wiggling around like Mr fox, The smart investigators in the fl social security system say my condition has improved. No I was just taking more and more sinemet to make it through the day.PD does'nt improve. just look in the dictionary. I guess they didn't believe the dictionary version of pd. I tried for military benefits and I guess since I was diagnosed in 2000 the military believe I woke up on day in 2000 and just had pd. I'll leave you on this cliff hanger for now it almost midnight here but things get better. i sorry if i offended anyone. Maybe, I just need to vent sometimes. There is a dark side to pd and if your aware of it you can avoid it.

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  • I can relate to loosing everything. My symptoms started when I was going through a very nasty divorce in 2004. I am a nurse, though we probably had a 30 min. lecture on PD and it was probably not even on State Board exams. I and my Internist thought the symptoms were due to the stress.

    I was let go from one job because they thought my tremors and lack of balance was due to DT's, never mind that I had passed drug and alcohol screens! Yes, I know I should have sued, but I had enough of courts and lawyers during my divorce.

    My doctor has told me I cannot work as a nurse any longer. I am a single mom and just filed for disability after being let go from my job

    .

    I did much what you did, internet searches, plugging in the symptoms and having it come out as PD. I went to three neurologist before someone actually did a real exam and listened to what I said. tthe first one spent maybe five min. examining me and told me I had neuropathy. I was well acquainted with neuropathy, I had worked with diabetes patients for many years and knew what that looked like!

    You are correct, in general, the medical community is not aware of what PD is. I feel a need to educate them! There were so many symptos that I did not even want to tell my internist because I was aftraid he would think I was crazy! The visual hallucinations seem so real! I have been in bed thinking I saw spider webs all over my ceiling, large bugs crawling on the floor, one evening I was trying to find my house shoes and saw this whole stack of shoes next to the bed, when I reached for my shoes, nothing was there! And I have never done drugs!!!

  • 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

  • wow i can relate especially with the compulsive dis orders

  • Danny Wilson, I hope you have found a ray of sunshine along these past four years. I very much appreciate your story.

  • Thanks for your comment susie . i hope your situation gets better

  • After being diagnosed I retired at sixty and moved to Mexico. I had enough to live on for the two yeas I had before I could get my social security. Of course I was turned down for disability SS so I went with regular benefits. After nearly four years in Mexico where you can easily live on your SS benefits I decided to return to the US. Just when I did, two yeas ago, the govenment approved VA benefits for veterans that had been in Vietnam during the Agent Orange years. My income incerased dramaticly with the VA and SS. So now I am living with enought income to keep me out of poverty. Every cloud has it's orange lining.

  • mexico good idea i would of pick thailand.

  • Getting (or keeping) Social Security disability benefits is a long, hard, arduous process. I urge you to find an attorney in your area who specializes in PD disability. There ARE good attorneys out there. I found mine by joining a young onset support group.

    Think you can't afford an attorney? The good attorneys won't make you pay anything until they win the case for you (and if they don't win, you don't pay).

    It's well worth it. These attorneys know the ins and outs and how the system works.

    I would also encourage you to find and join a young onset support group. I didn't want to at first. I thought it would be depressing to be around a bunch of other people with Parkinson's. I've found it to be extremely helpful though.

  • thanks joel i have a attorney but the case has just come back appeal its deen going on now for 4 years

  • don't give up on it...it will happen!!

  • to capsteve

    i'm leaving this comment in the hope that i can help you,i had my depression for a week at the beginning when the symptoms were really nothing to to write home about, but at the time 13 years ago i thought it was the end of the world. the first time i got the tablets frew them against the wall said i'm not taking them for the rest of my life,[ only not as polite as that ]and when it said avoid alchol, so i rang up doctofrs and said i'm not going on holiday if i cant drink, and he asked me how many did i drink i said 4 or five he said to cut it down by half the amountso i did. and eventually as my meds increased i got where i dont bother me..then over the next few years started to write things down in poem,so that took my mind off it, always keeping busy. and onebank holiday one easter in march we decided to go to whitby with the kids for the day we got there and on the sea front there were hundreds of lambrettas + vespa scooters, suddenly something clicked inside , and i said to hubby want us to get one as i was a mod and he was a skinhead in our youths, before we met.and i was passionate about northern soul , so we got home and my hubby had just taken redundancy after 29 years at his job so we bought a 1968 lambretta and we never looked back i found out from my sisterinlaw that i could claim disability living alowance [ DLA] WHICH IS NO MEANS TESTED, this helped us a great deal as i got the full amount and i got a company called work link who basically filled all the correct forms for me to get full amount and to cut a long story short they helped me get on a radio broadcasting course which i ended up having my own show, then i got as i got so bad as i was bouncing off the walls and got the chance to have deep brain stimulation 4 years back , have you ever thought about it? because its improved my life 80%.

  • thanks for comment i feel dbs is the way to also and even no i had a lot of trouble i am going to finish the surgery

  • Yeah. I know.

  • ?

  • I know how depression can hit...I was very down when first diagnosed...especially after doing some internet surfing and finding a connection between pesticide exposure and PD...I worked for a pest control company in Phoenix ,Az...the chemicals were stored in a garage which had the air conditioning unit for my office vented there...basically they pored chemicals from the air on me daily...I was let go after several years of being their "multitask-er"office person because my performance was failing..yep...after I went to DR. for symptoms I knew where I got it...but there are no facts that spell it out as a cause...just case histories...many farmers exposed to chemicals get it also..

    .I finally got my mind as together as I could and decided it was not an early death sentence unless I gave up...U just learn to adapt and not put as much pressure on yourself to do what U might have done in the past...I take "baby-steps" and if I accomplish more than I anticipated I feel great..if not...there is always tomorrow...

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