Daily Life


#1
Hi all like most of us pd sufferers on here I guess we all have good about days and bad.I just feel that at the moment they are more bad than good. I am 43yrs old and was dx just 1 yr ago and I just feel that I am still trying to get my meds balanced been off work for 7 months as I took depression about 5 months after the initial dx. Don't get me wrong I have a very supportive wife and two good teenage sons who are always there for me. I have a fantastic GP who has been very understanding and supportive. I am now on half pay at work and I don't know if its the nearer it gets to Christmas the worse I feel as I am worrying about our finances. For the past 3 days I have been really horrible to my wife and kids snapping at them and moaning and now that they have gone to work and school I am sitting here at home feeling sorry for myself. Please tell me that other pd friends also get times like this and its not just my depression thats getting worse............As for the DWP i am demented filling out paper work for them and Now because I was advised to apply for DLA our friends at ATOS HEALTH have sent me a 21 page document to fill in strangely enough all the questions in it are the same as the DWP forms. Sorry my fellow pd sufferers for giving you my moans and groans :cry:

#2
Try the following:
PD + menopausal + snapped humerus bone, still in brace after 10 weeks + still cannot sleep in a bed = my hubby and 18yr old daughter are on the verge of leaving home.
Sometimes I simply embrace the wallow and really go-for-it:

sarcasm, tears, short-tempered, self-loathing, questioning the loyalty of those who love me, managing to read all statements wrongly, drinking too much.........

This can only last for so long,I then apologise profusely.
To cover all that bile up is counter-productive but I have discovered that the luxury of self-wallow comes at a price: we must sell it for what it is:

necessary selfish time.

The key is to let everyone know that this is waht is going on.
Alternatively: buy 100 cheap plates and go Greek:

SMASH 'EM.

#3
Hi Alan, your sounding pretty fed up right now and I'm sure the DWP document isn't helping. There is plenty of help out there to fill in these ridicules documents I always use www.benefitsandwork.co.uk, Ive joined but they offer loads of advice regarding the completion of all benefit documents and they show what questions will be asked during assessments ect.

I hope that you get the help to successfully claim your DLA, it just might
make you smile!!!

regards
Glenchass

#4
Thank you Glenchass , I will have a look at the website that you have listed and your right all these forms don't help especially when you are already feeling down.:rolling_eyes:

#5
Any sort of forms are complicated and stressful enough for someone who hasn't got Parkinsons .

Don't beat yourself up , you are probably struggling in ways yo do not recognise .

People on this site understand ,

It is my husband who has the Parkinsons but living with him and it for so long I do sort of understand .

If you don't understand what is happening yourself I am sure it is as difficult for your family even as good as they are .It takes alot of understanding , and family life normally has it's ups and downa .

Good to get it off your chest , does your wife come onto this site , she would then see how other are struggling and coping both sufferers and carers , spouse .

#6
hiya alan welcome to puk forum.plase dont feel your a burdon to anyone,feeling down come with pd,but thr is goo sides to alan,its not all down hill at all,you just need to get those dla forms rittern and hopfully your sucesful and things wil look briter,you have quite time to do them now cus house is quite all gone to work.it also gives you anadvantage to look throughpuks website to learn more about parkinsons.belive me alan im still learning new things and im 43 and been dx for 12 years now.you will feel more postive alan ,cus many members on here will surport you and your family,thee is also a very good helpline here as well if you need to talk over the phone,number top of this page.hope to see you around alan :smile:

#7
Alan, DONT get anxious or stressed about form filling, phone your local CAB office and ask for help filling in the forms, the staff are very helpful and supportive and will even come to your home and fill in the forms on your behalf if you cant get to them.
Good Luck :smile:

#8
hello, some of you will remember me possibly,new peeps wont i teent to drift in an outof the forum like a ghost writng posts for concecertive days then quite for months,n always feel nl9iike ive gott my tail between my legs on returningand as some of you already know iv had pd for nearly ten years now, and quite frankly im bloody sick of it, although i still carry on with lots of things,my mood drops dramaticly upon wearing off,and then rises when the meds kick in.........the puzzling thing is a couple of months ago i decided to start goin abit easyer on myself only instead of doing less i seem to have focused into one big event , then finding another bigger one to accomplish, i have always been very ddetermindd, but im a little worryed i might crash and burn preiturely, and i rlly dontwn ao happen ......does any1 relate or understand?

#9
Hello Alan 1405 and everyone,

Please try not to worry too much Alan, I can remember how we worried when my husband was diagnosed thirty years ago at 39 years of age. I was already disabled from lifting people whilst working on hospital wards and with a young son we thought what are we to do. My husband was struggling a bit at work and went off sick thinking he would go back after a week or two but he never did, so make sure that your HR people know and that you get what you are entitled to, also the local Pd support worker as well as Cab will be able to help you with any form filling and don't forget to fill it out as if it was your worse day as we all think we can do more than we really can. It is so important to get this help because they know the right way of answering the many questions which drive you mad, as they say it's all in the way you say it that counts.
It is lovely to hear you have good support from your wife and family and do suggest that your wife looks into the forum as spouses need support and that feeling that you are not the only ones believe me it does help.
This is where you must feel free to get things off your chest or ask for advice or help with a certain problem and you will get an answer.
I wish you all the best
vivian

#10
Alan1405
I'm 53 and in the same position as you exactly except my wife hasn't the time to support me as we have got all on with my daughter who has cp and diabetes and my son who has aspergers and two foster kids.most of the time I'm not bothered about living I've been that down.i don't have good days I've also got bells palsey which feels like I'm being crushed everyday.anyhow apply for dla I got it but the wife drilled it out eventually it's along form.all the best.john

#11
Hi Alan , I have had Pd about 30 years and , boy do I get off days, but I get good days too. When I am having one of, what I call, 'Jekyll and Hyde days, its my husband who suffers! I admit I didn't realise I could be so horrible to a person I love and adore. But it does pass. I am not sure what causes it. But don't feel alone. As I have discovered over the years. whatever PD throws at you, you can rest n the knowledge that you are definatly not alone!

#12
Hi, Have not had a good day at all today. Have got a cold, which in turn stops my PD medication kicking in at the time I think it should. Then because the previous dose is running very low I get a bad tremor so I end up sitting on the floor hugging my knees with my arms and cry. It doesn't really help, but I am low on energy and lonely. I am usually by myself 10 hours a day, which is fine when the weather is good, but not so nice when it's cold and dreary like today. My PD nurse prescribed Madapor which I can dissolve in a little water and it acts more or less straight away. But as usual, today I end up crying down my mobile to my hubby who is at work.
Any ideas???

#13
Hello Alan
The form is a doddle,but if you are having problems ask the DWP to send one of their people to your home ,they did for me and you will be in your comfort zone and feel more relaxed. The depression you feel is absolutely understandable , I
would advise you see a professional who will put you on the right track, once
again you can arrange for someone to visit you if you don't feel well enough.
I know this might sound a bit obvious , but what are or were your hobbies, I know the kind of depression associated with PD can be very severe , but you have to fight back Alan and Hobbies are a good start, for instance you are male so you
will be Impressed by the spitfire,no don't laugh, go to a Model Shop and buy two or three Spitfire kits, they can be all the same Mk or Mk 1 -4 -6 follow the simple instructions, you don't even have to paint your first one, I defy anyone
to say when they hold a 1/72 scale Spitfire in their hand especially one they have built that they don't feel satisfaction, then try the second but paint the inside of the cockpit and the pilot and perhaps the wheels,at your third effort paint every thing and apply the decals, I hope you don't think I am a geek Alan
but trust me it works, the larger 1/48 1/32 and 1/24 scales are also available.
If you decide to try this unusual method of relieving depression use liquid
poly in a bottle its much better than the tube and is easier to apply.
Good Luck And Best Wishes fedilike

#14
HI There sorry you are not feeling so good just now :( my husband gets like that at times. We applied for higher rate DLA and had a support worker from PDUK to help us fill in the form as it was all gobble de gook to us mere morals.
She was fantastic really helpful.
Hope you feel better soon and get someone to help with the forms.
Best Wishes Heather