The Day it all became clear

The Day it all became clear

15th Aug 2011 / 3rd Nov 2011

2 days that will stay in my mind for life,

The first date is now some what just a memory (I know that will be lost soon as my memory deteriates)

It was a Monday I was due to pick my daughter Lauren and my nice Dominique up from Edinburgh Airport later that day, its funny how events can a do change our life.

Had a bad Sunday woke up shaking stuttering and can only describe I was having a fit, Laraine ( my Wife) was non to happy by the way I looked so phoned NHS 24 ( what a waste of space they are) any way , after about an hr of interrogation Laraine was told to take me to Easterhouse medical centre to see a doctor, so the journey begins, trying to get me up showered and dressed was a challenge in its self, some time later I stagger to the car with the help of Laraine , arrived at the medical centre and was ushered to a consultation room to wait to see the DR , hyperventilating and shaking uncontrollably , a nurse came in to see if I was ok, I started to fit and he legged it to get the doc, after about 20 mins and 6 mg of valium I started to calm a bit , doc asked me a lot of questions and as I was under the care of the shrinks at kirkintilloch( a story I will tell later) it was suggested that we go to Parkhead hospital a psychiatric hospital not far from esterhouse, when we arrived we sat at the reception for what seamed like hrs , we were then told to get up to Kirkintilloch Medical centre where I would be seen by 2 psychiatric nurses.

Boy did I not like them , so patronising and condescending , again was told by these two fat gits that it was all in my head and to calm down and I would be ok , I protested as best I could and they agreed to me seeing a psychiatrist , shunted up to Stobhill hospital ( now this all started around9am in the morning , its 4 pm before I was seen ) the shrink again said it was stress related and to calm down, more valium was dispensed and was sent home , with the crisis team coming to see me on Monday,

Never seen them on the Monday i ended back in hospital this time i had tried to end it scooped a shit load of drugs and washed them down with beer, never told anyone thinking that i would not wake up , imagine Monday morning and fuck it i was still here , couldn’t even top my self , what a dick a useless piece of crap, any way , spiralling down ward to oblivion , i ended back in hospital , was admitted to the Stroke ward in Glasgow royal , after a week i was examined my a professor Stott who specialise in Parkinson’s after a few hrs he said , i have good news and bad news for you , ok big man give me the good news first i said, well you have not had a stroke , ok, you have Parkinson’s and there is no cure , the blood just seamed to drain from my body , i was thinking , how long do i have ( my Father Died of altzimers in 2006 , and i thought that i would end the same)

It all began on 3rd Nov 2011 when at the age of 52 I was diagnosed with Parkinson's...Faced with a diagnosis of a chronic condition, which while thankfully was not fatal was still uncertain and terrifying. As I sat in the chair listening to the diagnosis feeling like I was adrift, denial springing to the surface …. Not me I still want to do so many more things, what am I to do?

Then i found you all on this site and a new life began.

My story so far

Al

21 Replies

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  • Hi Al,

    From one Jock to another I bleed for the way you have been treated. Bloody disgrace. Living in Angus - you know, the dry side of the country, by the way!, LOL. We East Coast Parkies are fortunate to have educated medics who take care of us but obviously this is not universal. Margo MSP has done her best but even she must be banging her heed against a brick wa' sometimes. I was diagnosed in 1999 and take a shed load of pills daily and apart from a rant the other day on this website cope with PD reasonably well. Topping yourself is not the answer. You will just piss off/majorly give guilt wraps big time to all the folk that care for you. I'm 66 on 11th March and will be getting blootered for a fact so why don't you join me in celebrating surviving another year. I have a brilliant wife who looks out for me and cracking pals, some even from the West(!). Having spent most of my life in England and abroad we decided to return to Scotland 3 years ago (nothing to dae wey Alex Salmond) and it has proved to be the right thing for us bearing in mind my wife, Elaine, is a Brummie. Hang in there Al, you are not alone

  • HI Al it's me again. Highly recommend Kevin Bridges DVD (The Story so far) standup. Now that WILL cheer you up. If you want to chat one to one my email address is drew.saunders@sky.com. Oh shit just gone public with my email. Hope i don't get too many weirdos hackin' in!

  • Hi Drew,

    Thanks mate for the kind words, i have the kevin Bridges DVD , he even signed it for me ,i think he is better than connolly , just watched his program on BBC , this kid will go places, any way it a wet friday in the west , so i may as well get wet my self and have a beer

    have a grat weekend Drew

    Regards

    Alan

  • I agree. Big Yin was my hero. Soooo funny but lately not so although his travelouges are great. Kevin is similar in that he talks about his observations of life but sharper. Hope he does well.

    Had a rant in follow up to Courts blog which may interest you. Are you on meds yet and if so which ones?

  • i agree a young talent, iv got tickets to see him in glasgow later this year,

    i am on requip lx and have been for 6 mts, have bad side effects though, seeing my PD nurse onmonday to see what else will work for me

  • Hi Al. Thx for sharing your story. I'm glad to know you thru this site.

  • Thanks Big Man

    Alan

  • You have been through the mill. What a dreadful experience, not only for you, but also for your wife. She must have been terrified.

    Being told you have Parkinsons is bad enough, but to go through your experience, well there is no excuse for that. I hope that someone manages to control your symptoms, though this may take time, and that you will get a better quality of life.

    I have never phoned NHS Direct I always phone my local Dr or out of hours GP at local hospital or even an ambulance. I have heard similar stories to yours.

    Things can only get better now you have found this site. It is a lifeline to me and to many others. Hang in there and keep posting.

  • hi,

    That not the half of it, i will write it out one day , its like war and peace

    Al

  • s...t al - you poor s-d you really have been through the mill .. glad the pills didn't work tho as i would never have got to know you xx :-)

  • Got a wake up call that day,

    i feel like a stupid kid, but that was a few mts ago now and my head was in a bad place.

    happy to say im not too bad now

    xxx

  • hi al

    i am so sorry for the problem s u hav e had

    i thought scotland was so much bette rfor health care htan England - but getting a diagnosis of any type fo Parkinsons is v difficult 0 but nto the end of the world

    it IS the end of oru worlds as we have knwon them adn every decision has to eb taken ih the ligiht of the immediate present and near future

    \but that 2 me is not the reason to try and giv eyp obn oneself or on life

    i have usffered form deprssion and anxiety most of myadult lfie and knwo the worhtlessness and other negaive feelings of not wanting to go on wiht life

    but stranfely i have bene upbeat since my diagnosis of Psp= no meds /much shorter life span(2/3 yearsmax) etc ec

    but it explains so many of my recent health problems and i am justdoing whatt littlle i can 4 myself each day

    and tryign not ot feel guilty or beat myself up when i fall over and cuase others pain

    (mY knee pads prevent ME feelign much pain!!or drop and break things

    u r doing well to still go out on your own - i do not do that any more

    so plz stay on the site

    if it had nto been for you and andy i would not havelearned to table dance !!

    or thouhgt ofcelebratign my house move with a virtual party!!

    or been able to do a smiley

    so c u there on sat 3 march at whatever tiem you liek

    love jill and a big :-)

    ps how do you change your photo on the site??

  • I know how you felt that day. I was seeing a shrink after having a week of panic attacks. Naturally he gave me a script for some antidepressants [always The Answer], but even after I was diagnosed he insisted "you don't have Parkinson's you have anxiety". I thanked him for curing me and never returned.

    I think that there is a debate in the psychiatrist and neurologists community as to WHAT Parkinson's Disease IS. Thus far, the only people who understand it completely are The People Who Have Parkinson's. What ever it is it sucks and needs to be cured ASAP. Until then we all have each other. Hold on. Peace .

  • Cheers Joe

  • my doctor seems to think my anxiety I cause....never had it before my PD kicked in and this has all come about in the last 5 years....let alone being depressed about everything and waiting on SS is the worst of it they think I can do the same job I did for 12 years I can't keep up on my own home let alone clean 17 Hotel rooms that is DEPRESSING....wish i could go back to work it might help but I know in my heart I can't anymore....I hate the fact I have PD and the SS dept needs to know that it is'nt a cake walk...they took money from me out of each and every pay check and now I have to fight with them to even receive my benefits and get a lawyer who mind you are great help but then they take a % of your money...I want a quick end to this SS problem and want to live like I used to not having to worry about this shit and go to the drs. without worryingdo i go to the drs. or pay the electric bill...having PD is'nt fun I did'nt want this but I've got it andthey make me feel like I'm a loser for asking for my benefits that I paid into....THANKS to this site I can vent!!!!! PEACE, LOVE and SOUL.......

  • Grammy ,

    i know how you feel, i tryed to get DLA and got a a knock back , they said i was ok, how the hell can these people decide on your future when they dont even meet you let alone assess you face to face , it seams that the people like you abd i who have paid all our dues get fuck al,l yet all the scum who have never worked a day in there life get everything, i even aske d about ESA but as that is mean tested i got the same answer NO!!, i know iam haveing a rant but it pisses me off to think that the ones who need and deserve help , are cast in to the wind to sort it out by themselfs , yet the government borrow billions of money to give it to foregin ade, must stop now getting to political

    Alan

    Love to all

    xxx

    and yes i have had a few beers

  • Morning Alan. So, DWP did not award you DLA. This is what to do. Find your local Parkinson's Group then contact the welfare person in that group. They will help you with an appeal against the decision. They know the key words that are required. I was turned down the first time but appealed and with their help went from nothing to high mobility and low care. I do need what I was awarded but you have to know the rules of the game. That's where welfare people come in. Let me know how you get on. Slange

  • hi al

    i was turned down for DLA but whne i got my diagnosis i reapplied and iwth myh ocnsultant and gp help and the psp nurse got the DLA

    It enables me to take taxis pays for soem of the care i have and generally i feel i have it now until further rnotice )( I hope)and then i shall need 2 get continuing care

    the beers r good for a friday night - i amhaving half a bottleof good red wine (For my constipation)and the other half tomorrow night

    so enjoy!!!

    and try adnd reapply

    it is well worth going through the 70 oddpages of forms to try and get hte DLA

    i jus tgot it b4 iwas 65 the cut foff poitn b4 it changes to ATTENDANCE ALLOWANCE

    So you do nto have to be THAT old to get it u ra mere young thingi n comparison

    love jill

  • love you

    xxx

  • Thanks al, we are all in our little special parkie 'balloon' I live in hope that one day someone will 'burst our bubble' but in the meantime - love you too xxx

  • Cheers ,

    no sleep last night, its 6am sat and am shaking like a bag of bones, not to worry it will soon be med time @7

    have a great weekend

    Al

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