Introduction


#1
Hi,

i just thought i should introduce myself - my father was diagnosed with Parkinson's in 2005. He has always been healthy but had the shaky little finger which we always ignored until the day it was diagnosed. i like many others knew of Parkinson, but didn't know much about it or know anyone who had it... fast forward to now and my dad is around 64/65 and he continues to work and play golf but the shaking of his hand has got worse. We have tried different meds and he is thinking about DBS. Aside from his hand, he is pretty much ok, but i do worry about the future. The thing is like you all know better than me is that we all go through so much different emotions.. i am so angry that there is no cure and i feel that dr's, neuros i know are trying there hardest but i feel that medically no one understands Parkinson's or what medication to give. You could try 4 different dr's and they could suggest 4 different drugs, and all these drugs are so powerful and can have side effects. I feel i should utilise my frustration towards raising money and making people aware of Parkinsons and that is what i will do...but i feel governments need to make more of an effort to find a cure. Anyway sorry for my rant, not much of an introduction..but hi!

#2
Hi Cure and welcome to the forum. You are quite right, Parkinsons is such an individual thing, we all seem to progress at differnt rates, need and take different drugs with an almost endless variety of reactions. But one thing we all have in common is the confidence that a cure will one day be found, even though the condition is not so high profile as other illnesses.

#3
Hi Cure28,

Welcome to the forum!

The tremor is unfortunately a persistant beast. DBS should fix that and it does not appear out of bounds for your dad as it does for my mum.

Know what you mean about the different meds. The older people are with PD the more stock-standard the meds are (i.e. usually levodopa), but your dad's is on the cusp where different meds will be thrown up.

What meds is your dad on?

Understand fully your frustration and the cycle of emotions. It is also frustrating that the non-motor effects of PD are simply ignored when they are also affect QOL of both PwP and family.

Once again welcome and keep us posted!

Kind regards,
rico

#4
hello! I know what you mean about tremors and stiffness,emotions everywhere minute by minute, what I find really difficult is I'm so lonely with this pd. My pd nurse is 35mls away, and I don't want to "trouble" her,Although I know that it would be no problem to call at any time,it's me that's with holding myself from help!

I think at the moment I need counselling with someone who knows about pd.I am grateful to find this forum,and more so for the help that is here, but I don't think It'd be fair to pm any one of you lovely people if your feeling good then I have a real moan.Sorry if this is on the wrong thread.

#5
Cure welcome to the forum. There is lots and lots of help here.Pebble and Rico I'm sorry if I wandered from Cure's topic.

#6
Morning Cure - welcome to the forum.Yes, PD is a very individual illness and getting the medication right can be a challenge. A couple of years on from diagnosis and my medication is being changed yet again but we just need to keep praying that a cure will be found and I am confident that it will be found.

There are some very informative people on this forum who I am sure will be able to answer any questions you may have.

Lizzy

#7
hiya welcome to the forum ,im ali ive had pd 10 years now ,im 42 ,there is alot of info on the forum and good friends ,i hope to see more of u around x:smile:

#8
Hello and welcome Cure, I'm sure that you will learn lots on the forum there are loads of people who have lots of experience and they are usually very helpful. You don't say what meds is your father currently taking but let me assure you that pd is not the end of the world or life. Ive had it for almost 11 years and I'm not written off yet!! Just try to learn as much as you can about the condition so that you understand your dads reactions to it more and give him loads of support. In the meantime we wait for the big cure.....


NENE:

A warm welcome to you also. Don't be afraid of having a good old moan on the forum, in fact I think there is a thread available for a moan session somewhere. There are times we all feel c..p so feel free to let rip. We are all hear to help each other and listening is part of that process.

regards to you both

Gleenchass

#9
Nene wrote

"Cure welcome to the forum. There is lots and lots of help here.Pebble and Rico I'm sorry if I wandered from Cure's topic."

Apology accepted. Just don't let it happen again! :grin:

Seriously, Nene, feel free to vent. You're amongst friends here and we can all relate to what you are going through. Mum is forever thanking me for even doing the smallest of things, she, like you, doesn't want to put people out. But you'll find these people are more than willing to help .. and from what I read and hear, these UK PD nurses are cut from a fine cloth, lucky you :exclamation:

#10
Hi -

Thanks for your replies...i was worried noone would say anything and i thank you for replying. I feel so helpless sometimes and wish that i could do more. Not sure on the med but shall find out.... whatever we believe or feel, we are all dealt a hand - and that is what we have to up with...... but a cure we shall find, when i dont know, but we will!

#11
thanks for your replies especially Rico for letting me with whatever it was(I can't remember!!):smile: I,ll try not to do it again:flushed:

#12
Hi!

My Dad was diagnosed in 2008 but we noticed shaking in the finger a few years before. Since diagnosed his symptoms have naturally got worse and my Dad refuses to accept he has the disease. As a reulst he doesn't go for reviews and isn't on any medication, he also suffers from angina.

I accept my Dad's choice about his treatment but its not easy. I can see the personality changes and how those around him treat him differently, one example being a neighbour asking if he had had a stroke. There is no doubt his symptoms are visable and he has lost a lot of weight, this is something he feels also. He isolates himself even within the home and when out sits awkwardly on his hands to hit the shaking but just makes it more noticable in his arms.

Its not easy for me and my Mum who is at home most of the time other than a couple of mornings a week when she volunteers at the hospital for some restbite. I feel extremely guilty regarding both of them I had to move out in Feb due to work. I know my Mum enjoys me being there for the company and I feel bad about not spending more time with my Dad. I am only and hour away and get home on average every 6 weeks, I have started putting off going back as I know what I will be faced with and I find it hard to accept my Dad's symptoms and recently his balance is also affected. At the same time when I do have to leave I find it extremely hard.

I don't feel people understand or accept people with Parkinsons, I have got extremely protective over my Dad and I'm worried about what the future holds for us.

#13
Just wanted to say how pleased I am to have found the forum and no longer feel as isolated :smile:

#14
Hi Cure,

I am in a similar situation. My father is 59 and since christmas developed a resting tremor in his left hand, and was dx with pd a month or so ago. He has a physically demanding job and is otherwise in good health. He continues to work and at the moment is fully able to. I too am obviously worried about the future!
keep in touch!