Hello Im New and learning about Parkinsons and how to cope!


#1
Hiya my name is ELliebeth I feel that this site is a real lifline for people with Parkinsons Disease. I felt absolutley mortified when I was told I had P.D. A Typical. 3 months ago. I think Im just about coming to terms with it now. I feel very positive and have adopted the view that I can accomplish anything with a positive mindset. It certainly all makes sense now with all the symptoms before I was diagnosed where very scarey indeed. Over the last 12 months the symptoms have got worse (Tremor in my legs) Weakness in my arms sholders and legs ooh and being glued to the spot) that has to be the scareiest. I have found that know | am on the meds Requip xl 6mg that I can type again. My walking has improved but I still have to use an electric toothbrush to brush my teeth. and my daughter makes scrammbled eggs as I cannot whisk anything. somedays (good Days) I can grate cheese. whoop whoop This condition has changed my life. I would like it very much to share stories and chat about the condition thats why I have joined this Forum

#2
hello elliebeth
welcome to the forum. its a bit of a quiet time of day and i'm sure you'll get a lot more response later so dont fret!
cheers

#3
Welcome elliebeth,

Just recently been diagnosed myself, I like yourself, have a tremor but mine is in my right arm, I also have some stiffness in my neck/shoulder. You will find this forum a great comfort to you as I have done, it helps to share worries and hear from other people in the same boat. Keep positive if u can and draw comfort from the fact that youre not on your own

Milly xxxx:wink:

#4
Hello Ellebeth,

Welcome to the forum, I am sure you will make many friends on here who will no doubt have some of the problems you will have. Keeping a good positive frame of mind is so important so keep it up.
My husband has had PD for thirty years and is one of the early onset group which means they are diagnosed before 40 years old. He still plays scrabble to keep his mind sharp and many other quiz games, he has had to give up some things but still has plenty of fight in him and will find something else to replace what he can't do.
Best wishes for now
vivian

#5
Welcome Elizabeth,

you have come to the right place for advice and as Vivian said retaining a positive attitude is the key to how you will deal with this condition.
I would also recommend that when you have some time on your hands that you trawl through old posts. This whole site is full of the experiences both good and bad of other PWP's (Person With Parkinson's.)and an awful lot can be learned particularly with regards for things to be on the look out for.
You did not say what age you are and pardon me for having the temerity to ask a lady for such detail. The reason I ask is that PUK have branches up and down the country where you can meet and learn first hand. Most branches offer talks on many and varied topics and have dances and outings as well. They also provide access to an Information Support Worker and the thing I find of most benefit is simply the comradeship of other PWP's. No one will ever understand you better than an other PWP. The age question is about the fact that many branches also have Working Age Groups who offer evening meetings.
The best thing I did on being dx'd was to join my local branch although I do understand that what worked for me may not for you.

#6
Sorry Elliebeth, I will be happy when we get the facility to see the posts at the the same time as we are replying.Grrrrrrrrr.

#7
hiya ellibeth welcome to puk forum,as you can see there is good surport here and nice friends to be made,im ali,and ive been dx for 11 half years,im 43 years old.ive been a member of this forum a few years now and as times gone on there has been so many stoys from community members,so make you cry some make you laugh,and i guess thats wot it all about ellibeth we all in the same boat,and here for one another.it good to here you have apositive attitude towards things ,that helps alot.im sorry though to here that symtoms are startin to apear more than you may of thought at this time,but there is lots of info on puk forum,and on the helpline also who will guide you and give as much info as you require.anyway nice to see you ,see you around x:smile:

#8
Hi Bogman, I agree about not being able to see the post you are replying to. Its so easy to go off on one and then realise you've not really responded to what the other person actually wrote.

Try this
Log on and start your reply as normal. Then use your browser to bring up a duplicate Parkinsons page with the post in question but don't log on. Now right click on a blank part of the strip at the bottom where the web pages are named and you choose "tile windows vertically" or "horizontally" to get the two pages side by side or one above the other. Obviously you have to minimise any other web pages you may have open so they don't clutter up the screen. When you've finished you right click as before choosing "cascade the pages" and it should go back to normal. Having said that mine does not always quite go back to normal and I have to keep maximising web pages but hopefully this is just a quirk of my computer

#9
Hello Elliebeth like you I was recently diagnosed with PD, and also similar to you I knew beforehand something was wrong, I think and hope I have now accepted the situation.
The thing I worry over is walking I also have ostioarthirtis and barely walk and all the advise I am given is to walk, I wish I could.

My are left hand and jaw with a tremor (get them going in opposite directions and they clean teeth), some difficulty with constipation, also very,very slow.

But I am not going to let this problem ruin my life.

Tony.

#10
Hi Elliebeth,
Like you, I was only diagnosed recently,so this is all new to me as well. I can only say that the immediate welcome I got was astounding to me!!!!! You will ameet loads of lovely people onn this forum as I have and get lots of good advice as well.
Hope to hear from you again soon.

Lentil

#11
Hello Londonkid,

Welcome to the forum and this family as I call it of parkinsons. I hope that when you get the medication right you will have quite an improvement on your stiffness. It is always good if you can do some exercise of some sort, I have a chronic back problem and use a wheelchair but swimming with a support belt helps me keep going. My husband has had PD for thirty years now and is still quite good with movement apart when switching OFF, he is in a home now but they have a therapy pool which he uses twice a week. He is also very good still at scrabble and games on the Wi, before he went into a home he played short mat bowls every week with a group of other pwp's and we had a cup made for the winner, serious stuff for chaps.
I wish you all the best
vivian

#12
Londonkid----welcome
Lentil--------love it!

The names just keep getting better..........thinks, Bogman seems a bit dull to me now??

#13
Hi Elizabeth,

I'm also a new comer to the forum, and can relate to your apprehension about being diagnosed. It left me feeling spell bound about what was happening to me, but like you mention, reading the forums and the many free leaflets available from Parkinson's UK, it helped me get through the initial haze. The most positive thing I can relay to anyone, is, the unknown symptoms that we've carried for years without an understanding of what or why it affected us, then suddenly, with medication and finally knowing what we're dealing with, it is like coming out of the Abis. Take heart, you've made the break through, don't be afraid to be open to people, you'll find that people are understanding more if they have knowledge of your condition and that they are not nervous in communicating with you. Look forward with new vigour and hopefully you'll be able to get on with life with a new found strength. I hope this post gives you heart in helping you find a way forward.

Best wishes,

pegasuspaul

#14
Thankyou so much for the wonderful welcome. Godness I feel so much better now. Tell me, Is anybody still learning to drive I am and Im now scared that I will never do it because of the parkinsons. Apparently it is possible to drive an automatic car. I seriously still need my independence even though I have Parkinsons but I am worried now Ill never do it.:grin::laughing: Gosh Life is finally normal again. Im not the only one. Thanks again xxx

#15
hi
i would definitely go for an automatic only license.
from what i have experienced the main problem areas with driving are:
spatial awareness
decision making

the first us awkward in carparks , the second could kill you (not intending to frighten you off driving)

when you are driving you use your 'model' of the space around the car. you know where the edges of the car are. if you look in the mirror you can work out how far it is to the car you are reversing towards (on average men are better at this so it might be less obvious to women). this is affected by pd though, in my experience, improved by l-dopa but not by DAs. this results in the odd twang in carparks and slowing down in narrow lanes where it is difficult to judge widths.

more important is the effect on executive decision making - when to go onto a roundabout or join a motorway. hesitation or impulsive decision making are both dangerous. having to muck about with a gearstick at such times uses up valuable calculation time - so go automatic.
once again i found that l-dopa helps with this and DAs don't.
avoid driving in the dark, rain , or when tired. dont talk or change radio channels. for longer drives time it with the medication.
if you have a stiff neck, fix it before attempting to join a motorway. dont be hassled into speeding or making bad decisions, be conservative (except in the next election!)

get a small car.
move to australia.

hope i havent put you off driving, but to be safe you need to be aware of its effects.
cheers

#16
Hi i totally agree with what Turnip has said about driving. I changed my car for an automatic and have found it so much easier. I have always been a confident driver but recently i have found i avoid using the car. I couldn`t explain why but i just felt something was adrift. Turnip is so right you seem to lose spatial awareness, i tend to drive either to far away from the curb or to close and parking is a nightmare - when i do find a space big enough my neck is so stiff i can`t turn my head as far as i need to, its a must to have a reversing camera but i don`t feel 100% confident relying on it! I also find i can`t multi task so the radio stays on one channel and a conversation is difficult (especially on my own!:laughing:) it was even harder with 5 gears! One big problem is indicating, i find i tend to hesitate its not like i don`t know whether to indicate or not its like my brain won`t connect with my hand! I haven`t told any one else about this i thought it was just me losing confidence. I feel much better knowing i`m not on my own.

May i also welcome the newbies and i hope you are finding the forum as helpful as i have.

Big C :grin:

#17
Hello Londonkid,

Constipation is a big problem for pwp's and is very high on the list of discussion, you do need to drink plenty of water to help and this will also keep any urine infections to a minimum. Movical is another medication you can get from your GP which helps to keep everything moving, if you prefer stewed fruit or such things as prunes and soaked dried apricots they are good. It is very important to keep the bowels moving as this will help your PD medication to work better. There are fact sheets on the PDUK web site you can download for all these problems so do take a look.
As for the slow movement you are feeling it may be because you need a higher dose of pd drugs so do explain it all to the Consultant or PD nurse as soon as you can, don't suffer when you don't need to.
all the best
vivian

#18
hi ellie-beth welcome to the family. sure we will chat many times ...hi ali j.

love neenag xxx