Newbie


#1
Hi Newbie here,

I have spent a few months just visiting but thought I would join and add if possible to some great discussions etc.

Diagnosed about a year and a half ago, which was about 8 months after my heart by pass, which was 3 weeks after my heart attack, lucky Pat they call me oh and I forget to mention being beat up two months after my heart by pass which they think brought on the PD. And just to get us all up to speed my accountants stole over £200,000 from me during all this, which is probably the straw that broke the camels back and accounts for my current inability to leave my house, be on my own as I suffer from panic disorder.

Yet I am alive and have the support of a darling wife of 28 years, although reading the stories in the forum I am worried when I will become a burden to her.

I have realy dark days, even wrote my first suicide note which I was going to post as my hello and good bye on this site. But being scared of death I could not carry it out, also against my religious beliefs.

49 years old, cannot use my right arm/hand,right leg drags, head shakes, on 12 mg neupro and 2 x 2 mg trihexyphenidyl then all my heart pills. They all work for a short time then dosage goes up, seems incredibly quick to have gone from 2mg plasters to 12mg. Pain trying to find a spot to stick them too that aint been used for a few weeks.

Claimed DLA using info from this site, thank you for guidance, awarded highest rate disability and medium rate care, both indefinite period.

Depression and gambling all stop by to say hello to me rather frequently, lack of sleep is a true bummer and cannot take sleeping tablets cause of sleep apnoea, so been reading the forum watch you lot updating at 4 in the morning etc.

But more than any of the above is I have the love and support of my best friend who happens to be my wife, and another day with her is worth all of the crap above. She is the true victim of parkinsons, as are all our partners, family etc.

Never knew anxiety,panic could cause pain greater than the real thing, having had a real heart attack the pain was far less than the simulated one in my panic attack.

Anyway I dribble on, yup do that to can be very embarrassing lol.


I would say thank godness for booze but blow me away it makes my pd worse (drugs that is) and increases the panic attack, anyway as I said lucky Pat is my name.

The sun is out, a bottle of wine in the fridge(screw the drugs and panic thats tommorrow) georgeous women by my side, maybe it aint all bad.


Pat

#2
Fair play to you Pat:wink:

Radz

#3
Hello Pat and welcome

I'm glad you've been visiting and finally decided to join us. An awful story. Poor you and your wife. So glad that you have wonderful support at home in your lovely lady.
However, if you get that down again, come on in and we'll help, or pop in and get involved any time.
I'm carer to my hubby and we have our ups and downs. More downs than ups lately. If you've been watching you may know my handle. JC.
Take care
Kind regards JC

#4
JC and Radz thanks, see you both often on here at all times, guess I will joing the 04:00 club lol.

Pat

#5
hi pat, i was diagnosed 8yrs ago like you its down my right side and when my meds knock off i cant use my hand fingers wont move leg drags cant shrug my shoulder i was on the patches for about 2yrs then last year i was taken off them and given mirapexin which made me realise that the patches were not doing much, i am also on stalevo azilect and my life saver apo-go pen which when i am completley off i give my self an injection and within ten to fifteen mins i am back on again, has your pd nurse not mentioned the apomorphine, if your not getting much on time then it sounds like your meds need changed, the patches obviousley did not work for me and i was 14 mg the mirapexin changed that i noticed the change within a week the pen is there as a back up when my oral meds dont kick in its worth speaking to your pd nurse or consultant, hope things get better soon, sue.

#6
Thanks Sue I will ask at next meeting.

Pat

#7
Hello and welcome pat (scan)
Just want to say the forum is a good help to us all with lovely people who will give excellent advice and help when and where they can. I was dx 5 years ago age 48, coping!!!
Look forward to your posts and wish you well . love PB

#8
Hi Pat and welcome to the forum. Good heavens you have had an enventful few years haven't you. I know this forum will be able to bring you and your wife the help, support and advice that can make all the difference when dealing with the ups and downs of PD. Take care and see you around perhaps

#9
welcome Pat.

What a catalogue of things to go wrong, poor you, no wonder you are struggling. I hope you get sorted soon. My PD nurse was a great help to me recently so fingers crossed for you.

Caroline

#10
Thanks all, my chin is still up.

Pat