MEMORYGet yourself a drink. It may take a while to read this.

[drew410]

Today I lost my memory. I just could not remember where I put it but for the life of me I could not find it. I knew it had to be somewhere but where? I felt great. Made a coffee and watched the news on TV. Went back into the bedroom and I remembered where my memory was. In an instant the last 13 years came back into sharp focus.

In June 1999 I went to see a neurologist because I was concerned about a shaky right hand. After 1 1/2 hours of weird tests he said "You have Parkinson's Disease and here is a pamphlet explaining everything". Bewildered I lurched out of the hospital mind spinning. Parkinson's? What is that? Calmed myself down in the car in the car park and read the pamphlet. It was scary.I was going to turn into a vegatable tomorrow! Well, as it happened, I didn't. Still not to this day.

People who know about such things say that by the time you are diagnosed 80% of the dopamine in your brain has gone. Don't know where it has gone but it has gone. Dopamine is the lubricant that allows the receptors in your brain to send the signals to control your muscle movement. Most or all of you will know this but bear with me.

Oh, I forgot, by the time you are diagnosed you will have started down the PD trail some 5 years before (approx.)

For 12 months apart from a slight tremor in my right hand things were fine. Having taken voluntary redundancy at 50 y.o. with a pension got a part time job working in a golf shop 4 days a week and playing golf the other 3 days. Handicap of 12 going on 9 I was a happy bunny. Tremor did not affect my putting so no probs.

July 2000 had my usual Monday 4 ball, into the bar followed by bacon rolls and a pint or 3 then home. Sit down on the settee and promptly fall asleep. Woke up and realised I could not swallow. PANIC sets in instantly. You think that you cannot breath - you can but the panic says you can't. Gulping for air I get in the car and go to the medical centre - 5 minutes drive. Luckily my GP is duty doctor. Explain with difficulty what the problem is. He prescribes sinemet 125mg 3 times a day. Took one and swallowing problem stopped within 1 hour. Very relieved. Panic over. Hate taking pills so did not take any more. Good judgment - no, just lucky. GP contacts consultant. Consultant goes mental. "Get him off that dosage!"

Welcome to PD meds. Got a priority booking to see this guy (neurologist) in Leicester. Bearing in mind, apart from swallowing spat, everything else is ok but he prescibes sinemet 62.5mg 3 x day. Go back in a month at his request. See different guy at neurology clinic. "You don't want sinemet - agonists for you my boy". Off sinemet onto agonist (can't remember name of med). Get home and take first pill. Within 1/2 hour I'm bouncing off the walls. I'm living on my own at the time having divorced my second wife. Long story for another time maybe! So kick agonist med into touch. Inform neurologist via GP. He ain't happy. Neither am I. Battle of wills ensue. I win by basically ignoring him. Found out later he was a known numpty. Six months go by and slowly but surely I began to feel unwell. Not every day, just maybe once a week but unable to pin down what it was. Just did not feel well. Scenario - arrive at work - 20 minute drive and feel lousy. Senior pro arrives and I have to go home to bed. Awake some hours later and feel ok. Go back to work. Still not taking any meds. My boss in shop very easy going and excepts situation. More good luck.

Then the panic attacks started. Driving to work on reasonably quiet roads (golf shops open early in the Summer) A Panic attack would kick in. Starts with stomach doing impression of washing machine on high spin, feel dizzy, sweating like a race horse and feeling sick. Windows down and swallowing in air like it is going out of style. It passes but is freaking me. Back to GP. Prescibed diazapam 2mg. Take one before I start out - no problem. We are into 2001 now. Increasingly i am feeling more and more tired. My golf is suffering. I'm not winning. Tragedy looms. Tremor increases in right hand and up into arm. Putting more difficult. Playing buddies are taking the mickey. Not a happy bunny. Time passes. Things stabalize by me starting taking the sinemet x 3/day.

2007. Sudden downturn. Tremor goes into overdrive. Body shaking making driving more difficult. Controlling accelerator and brake difficult as my leg is bouncing about. Having difficulty walking any distance and standing still worse. Back to neurologist. After experimenting with slow release which did not suit I am now on sinemet 62.5mg x 9/day plus 1 x 1mg azelect.

Move up to Scotland. I have no energy. Moving a nightmare but we get here with a lot of help.

2008. February 1st. 8.00pm. Had a TIA (mini stroke). Wife the third calls ambulance. Paramedics arrive quickly. ECG, the works but thankfully i get over it quickly and no need to go to hospital. Follow up with alll sorts of tests, scans and whatever. Now on aspirin and statins. Beginning to ratlle when I walk.

Apply for DLA. Sorry to folks in USA but UK residents will know what I mean. Turned down. Re-apply with help of Welfare peson from Parkinson's. Awarded on appeal high mobility and low care. Get motability motor. Great. Everything paid for except extras on purchase and fuel used.

Currently stable - fingers crossed. Can't play golf. Can't walk my two west highland white doggies, can't garden, can't much of anything really but I have a good circle of friends and a wonderful wife.

You know, reading this back I wish I had not found my memory. But hey, life is never perfect.

[rch21]

Its a tough journey for many of us - but yours hs been something else. Took me a year to get diagnosed - am pretty stable now with sinemet 25/100 1 1/2 tabs 5x/day and sinemet 50/200 slow release 2 tabs at night plus miapex .25mg 3x per day. my first neurologist suspected PD and sent me to a movement specialist who said it can't be becuse I walked too fast (in spite of the fact that that is only once I can get that first step going and had lost about 25%of speed running and race walking short distances). many tests and dollars later he referred me to another specialist and here I am. understand about walking the dogs - have a westie /lhasa mix and she loves to wrap the leash around me - hard to believe a 15 pound dog can pull me over so easily.

hang in there - maybe your memory will get more selective and forget the bad stuff only?

[drew410 in reply to rch21]

rch21, thanks for your reply. Would be great to be able to control memory. Please do not worry about your future. It will only cause you stress which will not help your PD. Not everyone will have the same journey as me. Some better, some worse. My best advice is do what you can now. Wishing is good time wasted as my wife says. How many times do you hear people say "I wish I had done this or that". There are things that my wife and I plan for the future but just need more careful planning. Take care

[gracrn]

God Bless you my PD friend. This is without a doubt a debilitating disease. I was recently diagnosed Dec. 2011. I have had the tremors in both hands, but mostly my left for almost 20 years. It is progressing fast now. Increases meds and still more tremors. Side effects are not very nice. Nauseated, dizzy and just feel bad. Constipation is awful. I feel for you my friend. I am still able to walk my dogs and work in the vegetable garden. I am thankful for that. You are talented at writing.

GOD BLESS YOU AND ALL MY PD FRIENDS

[drew410]

gracrn, thank you for your kind words. I have found it theraputic to carry out the task. I have tried not to sensationalise the piece but rather to inform people of my experience. I also try to keep it light and hopefully sometimes amusing. I hope it does not scare anyone. I would hate that.

As far as I am aware all meds for PD cause constipation. I find that lactolose helps. It is said that God only gives you what He thinks you can cope with. Well, he's stretching it a bit now!

Thanks again and God Bless You.

[PatV]

I should write a chronology of my events with PD. It's kind of like childbirth. If we could remember the actual pain, everyone would be an only child. I just know, I have to be mindful and do whatever I can when I'm on . And learn to relax (!) when I'm off. THanks, Drew