I`m a new member to this site


#1
I`ve had pk now for 27 years,and also have a blood condition of recurrent dvt and pe`s; I`m deaf bilaterally,have angina,suffer costochondritis from time to time,and have ulcers on both ankles for the last 6 years.I`ve been on Pergolide since my 1st diagnosis,and have a heart echo every 12 months.Am I down about pk?Sometimes,like now as I`m on antibiotics as well for infected ulcers,but,as I say to people,some of whom think I"look" well, pk only affects brainy people and leaves the others alone!! That`s the way I cope.It`s the only way I thought I could,until I found this site.I`ve been,and still am, a memner of the pk society,and have left my brain to the Brain Tissue bank........when I`ve finished with it.

#2
Hi Rameses,
Golly, you're practically a veteran, welcome to the site! I'm still in training, having been dx two years next month.
You have a good attitude which I admire. Hope the ulcers respond quickly to the treatment you've been given.
Enjoy your Sunday, the extra hour was nice.
All the best.
Lorna.

#3
I'm a new member to this site.I've worked all my life,coal miner,car manufacturing,with special needs children and now I foster.I have twins one ihas cerebral palsy and diabetes and the other aspergers.I recently went to the gp for a slight condition and he noticed I was trembling.he asked if I shuffle my feet which I have done for years,so I now have an appointment with a consultant.but of course you go on the net for info.I've got all the signs of pd and had them years.I only need it confirming so I know were I stand with treatment to slow pd down.I'm worried I want to continue to look after my family and expected to in later life.as soon as I realised I had pd I was worried about being in a wheelchair and taking the support away from my daughter.I want all the resources we've got to help our kids not me.I will fight this pd as I have in the past for as long as I can.Ive worked to get here now I want to enjoy life.I will keep posting my experiences of diagnosis etc.i hope this helps others in my condition

#4
Hi Twins99,
Welcome to the forum. You've had an interesting working life, and now the fostering which I'm sure must be demanding and also satisfying work.
P.D. is not easy to diagnose, and no two people will have the same symptoms or combination of symptoms. So , you may not have what you suspect. Of course if your suspicions are correct, then this situation will have to be faced.
I am very grateful for my medication which allows me to keep working and generally be fairly active.
It is a learning curve to work out what suits you, and how to manage the times when you don't feel so good.
There is plenty of support here and I've learned a lot from others experiences.
I wish you all the best
Lorna.

#5
Hi rameses and Twins99,

Your both dealing with a lot besides PD, continue to fight it and stay as positive as possible.

Gill.x

#6

Well, I am back.....just to update on how things are going.

I still have ulcers on inside of both ankles,now dressed three days a week,and I have also mgot,wait for it!! Hyperkeratosis. That`s a new one for some of you.

Its when the dry skin on your soloes of your feet,that INSTEAD of dropping off, it regrows.

Its like walking with cardboard stuck to your feet,that is until the epidermis splits.I feel a hot spot,then after a few seconds, it splits open,and bleeds.Feels like walking on stanley knife blades for about ten minutes,then it closes up and you cant see anything.I had some cream with an acid init,which was very good,but cos it cost £236 for 250ml our doctor`s dropped it from her budget.Been on it for years.now on heel balm.

AND that`s not all. If you have ever had costochrondrisis it hurts. You feel you`re having a heart attack,but its on the wrong side.tis inflammation between the ribs and the lungs,and burns.Supposed to last for 20-30 mins,but my last attack lasted three days.Morphine stops the pain,

Comes when you have lifted something heavy,and twisted,or had a chest infection,and coughed awkwardly......Still have to call 999,as it imitates a heart attack.

Parkinsons? Well, I just say "Good morning,Mr.P.What exciting ideas have you  placed in my head for today? Are we going to get flak from the mrs,or not.No,that`s not fair.She comes very well,with her B12 deficiency and type two diabetes.

Also,if any of you come to Devon on holiday,I belong to the Exeter & District Model Boat Club,

and our sailing water is at Canonteign Falls,a beauty spot near Chudleigh.There`s leaflets all over the place,and they are,as well as us,on Facebook.We sail on Wednesdays,and Sundays.Me, I go most Sundays.With a variety of radio cvontrolled models,most of which I`ve built myself.No-one else,in their right mind,would build what I`ve got....like,"Puff,the Paddle Dragon",and at the moment,I am in build with "Clara,The Canonteign Dragon",which at 560 ins long,with a lifting head,extending neck,opening mouth,and the help of a walkie-talkie,so she can speak to the kids,she is powered by ba 6volt motor,fitted with Kort nozzle steering.All on an old yacht hull,with a balancing keel.All from  rubbish,most of which I got for nothing....scrounged!!!

Still, must hgo now...didnt expect to come here tonight,as I was recently scammed and lost a few passwords.So,I`ll keep shaking,and building,speak again soon.

Rameses   aka Bob


#7

Hi Bob.

Costochondritis....................I have had it twice and it lasted for months  so I sympathise with you having that and all your other complaints and still posting so up beat.

That was a long time away form the forum, don't leave it so long in future!!