Copeing with parkinsons


#1
as we no parkinsons is a progresive disorder,and it effects all of us in different ways,with our movement,medication i found is nessacery.we can mantain a healthy lifestyle though by eating a balanced diet and exercising.i no it can be challenging for us and also others around us like our children and husbands and wifes,and friends,it can bring worries and stresses.i found early treatment is best even if symtoms do no interfire with daily life just yet.sinemet is nown as the gold standard medication,our brains use the levodopa to produce more dopamine,which is lacking in parkinsons.more dopamine helps the symptoms such as stiffness,tremor,slow movements, walking and riting.regular exercise increases power of the nerotransmitters in our brains and gives us positve thinking.regular exercise relives our muscles tension which can build up in our bodys.steraching exercises is good flexerbility,for good balance and posture to.seeing a nutrtiost,or a dietiation can help as well.they can make a food plan for you.water is very important as well,drinking between six and eight glasses a day.fibre will prevent consitpation and provide vitamin c as well.to help from falling around your home lift up any loose rugs you have.dont use stepladders or stools to reach things down out of cuboards.have hand rails fitted on your stairs.warm baths will help relax your muscles.install nite lites.satin bed sheets help to makes it easier for movement in the bed.dress sitting down, not standing and always were shoes or slippers.these are a few things that i have found that have helped me cope with parkinsons,theres one main thing though i forgot is talk to people let out your feelings ,dont keep them in,i have found there is many people out there with nollage to help,good luck to all pd suffers x:smile:

#2
it would be nice if some other members of the community rote how they flet about copeing with pd,or some ideas that helps them :smile:

#3
As a member of this forum for over 3 years, and on occasion having been ticked off for (for example) the improper use of capitals, I feel the moderators could themselves carry out at least a modicum of quality control on incoming posts before they appear on the forum; which, we mustn't forget, is visible to the whole digital world.

[ This post has been edited by the community team because it does not comply with our terms and conditions. You can find our terms and conditions here: http://www.parkinsons.org.uk/forum_policy ].

#4
Hi Ali,

In response to the criticism of your post, all that would be required to help the readability of your post would be an extra space after the full stops and commas. Ideally the next sentence should start with a capital letter especially as the full stops don't show up very well but that requires an extra bit of coordination and it probably takes all your effort to type anyway. I am lucky to have been taught to touch type and that my sinemet restored my coordination. I have to say I had no trouble reading your post. As regards the spell checker, I have just deliberately mispelled the word "expert" as "expet" but the spell checker ignored that and took a dislike to my use of the word "Ideally" so it might be of limited help.

Best wishes

#5
Regarding ways of coping with pd.:

I am sure that we all have our own indiviual ways of coping with our own individual problems. Here are just a few things that I have found of help:

1) Putting a strip of white (or any bright colour of your choice) fabric in doorways - obviously well fastened down, preferably professionally. Or even painting such a strip. For some reason I find that this helps to avoid me "freezing " in a doorway. It seems to be easier to step over something rather than to try to continue to shuffle through with the risk of falling and/or panicking. Especially helpful I find when needing to visit the bathroom at night time.

2) The use of certain aids such as a "one touch" jar opener, a kettle tipper, a very long shoe horn (available from several sources. An O/T should be able to point you in the right direction)

3) Velrco as opposed to zips, buttons or laces. And these days this does not automatically = frumpy

4) Small, frequent meals as opposed to the tradional breakfast, lunch & dinner. And not feeling the need to be tied down to definite mealtimes

5) But most of all, accepting that there are certain things that I can either no longer do with the speed & efficiency that I previously was able to achieve, not being too proud to ask for help and to appreciate that I may not receive that help exactly when and how I want it.

#6
Hi Ali

I' m used to being 'in charge' if that's the right way of putting it, both in work, and probably at home, and I must admit that I now find it somewhat difficult coping with people doing things for me, that I could so easily have done myself previously.

I find now that I can't always deal with pressure and getting things done 'in time' anymore, and little things like being clumsy and knocking things over, and I feel ' wow this isn't me', but of course it is me 'now' and that is sometimes difficult to cope with.

Walking is the biggest problem as I have bad freezing and balance problems and not being able to walk far is a problem, but I have learned to cope with it and just do things in my own time - my new time, not in my old/previous time - hope that makes sense?

My feeling is that we have to cope with what we've got, and we can't give in to it -- but, we all do it different ways, and what's good for one may not be so good for another, but it doesn't matter - just 'fight the good fight'.

Regards,

Mike

#7
thankyou eileenpatricia,and annebernedette for your posts:smile:as for the post under mine ,im lucky i did not get to read the post before moderaters removed a section,but by the response of eileepatircias post im guessing its yet another post about my spellin,and i will say yet agin i carnt spell well,im dislexlic,i dont see wot the prob is,im trying my very best here,and lots and lots of other members have said to me ali just keep goin you doin well,be you,and iam.i will just say that first post of mine took me just over a hour to rite,it took so much out of me,my hands and fingers hurt so much after,and my head had it by then,i rote that post cus it how i felt,i thought it would help some people and some people would feel they wonted to rite how they coped with pd.when i woke at half four this morning i felt not to bad,i came on forum to have a nice relax ,a look about and a few posts,ive enjoyed doin this for a long time.but now how do i feel agin?pigged off im bein digged at about my riting by the one and only same person who just dont likes me,ive had this rottern disease for 11 years as you no,and you no how hard it can be to press keys ,etc.and anyone who has dislexlic will no how difficult it is to rite.yet agin this post has took me ages just to explain once agin about my spellin,if i affended anyone ,im sorry,but please try and respect me feelings a bit more ,thankyou:smile:

#8
annebernadette,thats a very good idea about the strip in front of the door way,i understand were you comin from,we freeze sometimes goin through doors:smile:and mike,you have said it all,
[do it in our own time,not no ones else,]you have hit the nail on the head:smile:

#9
Hi ali j

Reading your last message just made me feel sad that there are those out there who have nothing to do except to be critical of others. Crikey, having pd is bad enought without having tzo snipe at someone over sspelling mistakes. After all we are not all Professors in Literature. Just plod on as your doing, I dfor one find your messages interesting and informative. Keep up the good work.
regards
Chunky

#10
thankyou very much chunky x:smile:

#11
Hi Ali

I second everything that Chunky has said, we can't all be 'perfect', and it would be a boring place if we all were, rejoice in being different, it does take all sorts to make this world of ours - keep up the good work.

Mike.

#12
thankyou mike x:smile:u deffo rite bout me being different:smile:the thread name is copeing with parkinsons.and i guess cus wot has been said bout me agin ,has brought to mind by people responses that people have feelings for one another and care bout there pd collegues.anxerity is a huge part of pd as your aware of things hurt our feelings more ,we find things harder to cope with,causes inner tremors and outer tremors to be lot worse,and so on.its a lesson to be learned.panic attacks with pd can be awful feeling,standing in a shop with your purse open payin for your shoppin,people behind you in the que,sighing cus u takin a long time to pay and pack,causes panic,stress,more so than we used to before pd.i have found having pd has made me more vunuable,i seem to wont to trust people alot more and be looked after.pd does strange things to our minds and bodys,when we say to some one we have pd,they think old person shaking.im so glad there is more info out there,making parkinsons being aware now,having the people out there to care,and have more nollage of pd,im thankful to parkinsons uk,for all the hard work that they do day in and day out,bringing people togeather ,resurch,and surport.looking for that cure we all desprestly would like.thankyou puk:smile:

#13
Dear Alij,

I am so sorry you are having a difficult time and are so upset, I am afriad being a relative new member I don't know about certain problems people on here have had, I do know that living with my husband with pd for all these years and being disabled myself and getting older makes you feel more vunerable.
Everyone with pd or another condition has a huge struggle even though we all try our best to live life the best way we can, for ourselves and our families. I make many mistakes and forget to do spellcheck sometimes but I suppose because we all have so many other problems they become less important and I know I do write as I think and don't always make sense but the heart is there and to me that is what matters. Please keep posting and don't worry you contribute a geat deal to the forum so keep it up.
Have a good day if you can
best wishes
vivian

#14
well said Chunky . jonta .

#15
Hi Ali,

sorry to see it looks you have been got at again about your spelling mistakes, you have explained before that you have dyslexia, I can always understand your posts and find them interesting, mostly they make me smile but sometimes they make me sad espescially when I join the thread and see that others are being disrespectful to you. You are unique and I for one look forward to your posts please continue to post.
take care :smile:

#16
:cry:I entirely agree with Bethankit . I feel sad when people are disrespectful to you , if i need help i always look for Ali J . jonta .

#17
What is the motto keep moving . Keeping moving in any way that you can . whether walking talking writing etc etc etc .

COMPARE . It's what we all do on occasions but with any illness we shouldn't . ESPECIALLY PARKINSONS/STROKES FOR INSATNCE.

I haven't got Parkinsons but since my husband was diagnosed , and joining site such as this one have made and met other sufferers . I don't use that word lightly .

Illness is a great leveller . My mum had a really bad stroke and eventually ended up in a nursing so I do know what I am talking about ..

It was the same week that my mum died after caring for her for 20 yeARS that my husband was diagnosed

I also understand that evryone has different abilities and are different ages

Please excuse the errors . I am typing this at the same time as I am having my lunch . It's the only SPARE time I have , I have let my husband have a sleep and the Dam! smoke alarm has now just gone off and woken him .

Anyway got that off my chest and am finishing my lunch before I go and see to my husband

Hopefully he will be refreshed enough to be able to go out with me this evening . Not sure about me though lol

#18
I worry alot and try to live by this saying


God grant me the serenity to accept the things I cannot change
Courage to change the things I can
And the wisdom to know the difference.

#19
everyone who has posted on this thread,i would just like to say thankyou,reading the posts brought tears to me,but in a nice way,nowing we are all here for one another and thats wot it all about,its true wots been said we all different,we are not all perfect,the community on this forum has built a family,but a family which is holding out there hands to welcome more,and surport more,its wot life is all about.having parkinsons has changed me,and i no it has many other people,we may be sufferin in our own ways,but our hearts are gettin warmer to one another:smile:surport groups may not be your thing,but they do connect people togeather and understand totaly wot your goin through.learnin to cope with stress can be very challinging and frustratin,but remeber stress can worsen some symtoms of pd,tremor etc,speakin to a nurse or a dr or even if it gets server a mental health team.last year i had a break down i thought the hole world was against me,and truthly dint wont to be here no more.i had one friend though who came to me ,who i trusted with my life,he has pd also,he was the only person i felt i could talk to.after many weeks ,he finally got me to see sence and see a dr ,councillin etc,i felt ashamed of me self why this had happned to me,but i had no control of wot was happinin to tome.there was people out there being so horrible to me,makin me feel i was worthless,and i became to belive it,i had started to self harm my self,i may look back now and laugh and say u stupid stupid girl ,wot the hell was you playin at.but at the time,if you get that low,deeper and deeper in to deprssion.it just happins.the dr and coucillin,over time made me relize i am worthy to be here,even if i had pd,i still had alot to give to the community.they truned my head agin.and im gratful to all of the people who helped me at this time,they told me that pd,anxierty levels had played there part in all of it.but im here now and fiting agin,relgion gives peopledeeper understanding of there disease,helps erm beter to cope with the symtoms.i dont no if there is any relious members on the forum,but if there is im sure you will understand were im comin from.stress can come in different ways,phisical and emoutional.the most important thing is however the pd worserns,tremor etc,is to try and focus on stress managerment and relaxin in your daily life.try not to let the pd take over,your in control,try to be grateful for everyday we have.:smile: