Just to say Hello


#1
Hello everyone. I am new to all of this but want to get as much knowledge of pd as I can. My Mum has recently been diagnosed with Parkinson's the same week that she was diagnosed as having emphysema! Great week that was! My Mum bless her is trying her hardest to be positive. The only thing is she is also the main career for my Dad who at 81 is disabled and has so many problems I wouldn't know where to start with it all. I try and do as much as I can for them but feel so torn as I am also a single mum with a 10 year old. I also work part time and am trying to juggle so many things and don't feel like I am doing a good job of any of them.
I want to be there for my Mum and Dad but at the moment don't know what to expect from this illness. Will Mum need be to be around more other than just cleaning the house for her. Sorry I am rambling. Any advise would be greatly appreciated.

#2
Try not to look at the problems as a whole entity, take each one as it comes and it will be easier to deal with. My other half has had pd for coming up for 7 years and he is also becoming increasingly forgetful, but we try to laugh in the face of adversity and take each day as it comes. We can't change the future but we can try to enjoy each day. Keep positive. - Silverstone

#3
I am so sorry DSA, it must be feeling a bit overwhelming for you. I could hear panic in your voice which is understandable, given the circumstances.

One thing to remember about Parkinson's is it is a progressive condition, your Mum won't suddenly need more help, it will be a gradual process, giving you time to adjust to the news and think about how you will manage.

There are loads of agencies (age concern etc, as well as home carers, who can help you. You don't have to do it all on your own and there are benefits you can apply for such as attendance / carers allowance to help cover the costs of care.

Please contact the parkinsons help line and they can talk you through it all. There is also a pamphlet outlining the benefits you can access.

Your mum and dad are very lucky to have a daughter who cares,

Good luck

x

#4
Hello DSA and welcome to the forum, I am so sorry to hear about your family difficulties.

I have been dx for 11 years now and it has appeared to me that this condition is
very individual in people's symptoms can be quite different and the speed of deterioration can be too.

My advice would be to take each day as it comes and keep a positive perspective on life. Some written information may be useful for you to look at and there is lots of very good booklets that can be downloaded on this site. Take some time to read up on the condition and I am sure that this, coupled with asking questions on this forum, will help to put your mind at ease. Believe me when I say that your poor mother has more to worry about with having emphysema than PD right now. Do take care

Glenchass

#5
Hi dsa
So sorry to read about your problems. Just remember that the forum holds a wealth of information and is only a click away. There is not anything that your mum will experience that someone on the forum hasn't experienced in the past. It will not solve the problem, but you know the old saying 'A problem shared is a problem halved '. Hang in there and give any of us a shout if you want to get something off your chest. Oops sorry, I forget to say welcome to the forum.
Cheers

Chunky

#6
Thank you for your kind words. I feel a lot better today, I have just taken Mum out for lunch and we had a lovely time. I am going to look into giving up work though in the next 6 months or so, so I can be of more help to both Mum and Dad.

#7
hi dsa welcome to the forum,im ali im 43 years old ,been dx with pd for 11 half years.there great surport here on puk from community.im so sorry to hear about your mom,i do no wot your goin through.my dad had ill health ,he passed in 2006,mom has bad health and i have a handicapped brother living with her too.iused to look after erm before i had pd,as well like you working,and having a child,and i see how difficult it is for you,im sending you massive hugs:smile:they have carers now,and so do i for me self unfortunally.i try to be there for mom still,but just visting now,house work etc is now a thing of the past.but thats all it takes.long as they no you love them ,and your there for them,i say thats the strongest link to anything.but like i said i see how you feel, the situation your in rite now,i flet the same wonted to do everything i could,but did not no were to start,it was all bizzare,felt like everything happining at once.but with parkinsons dsa,like others hae mentioed ,it a slow progresse,thank goodness,so there is time to react to things,and sort your life out around your mom and dad.i see by your last post you wont to leave work in 6 months time,if you can finacially do that thats a great thing,give you much more time to be with them and also your child.but please try not to frett,i no it easy to say,but truthfully ,theres help out there,good surport,your not alone,it will be ok ,big hugs.wish you luck.keep in touch with us all dsa ,x:smile:

#8
Hi DSA,

Carers have a statutory entitlement to have their needs assessed to prevent their health being undermined by their caring role. Either you or your Mother or both of you perhaps can approach social services to have this done and this should result in some useful advice and information as to what is available locally as it does vary. There are also NHS Parkinsons Nurses and/or Parkinsons UK Welfare officers in many areas and the Helpline top left of this page might well be your
most useful contact straight away as they have a wealth of knowledge both medical and welfare related.

#9
Wow what lovely people you all are! I feel like I am now part of a group. You are all so supportive. Thank you so much. I must say when I wrote my first post I was so down, and then I felt selfish because it is my Mum that needs the support not me. I called Social Services this morning cause they already have involvement with Dad. They were not very helpful. When I told them that mum now has Parkinson's as well as COPD (that is easier for me to spell than emphysema!) she said oh what a shame! I suppose i will have to find out as much information myself! If I do leave work to care for them both I realize I wont have much money - mind you I don't earn that much anyway. I suppose I could apply for carers allowance, mind you I doubt that would pay my bills not to mention support my little girl!
Sorry just had to nip around to Mums. Dad phoned and was so upset because he was calling mum and she wasn't answering - he couldn't get out of his chair unaided and felt trapped and thought something had happened to her. When I got there she was just fast asleep in the chair! I had to comfort him and tell him it will be alright. I had better go now as I am off to boots to buy mum some tenner ladies!

#10
Hello dsa and welcome,

I see you have had a lot of useful information from fellow forum user's,
Don't forget you can get help from Crossroads care or the Royal Princess trust which ever is in your area. I have also found the CAB very helpful and they will look at everything and support you through the process. Both your parents can have carer's allowance and you yourself can claim it if you are looking after them for 35 hours a week, you can also earn around £100 per week net providing that your parents are getting attendance allowance of course. Do get their advice as they have everything at their fingertips. You do have to be a bit pushy with some Social workers, they didn't help us at all, if you need to get the Gp involved and get every aid to assist them in the home you can from the O/t.
best of luck
vivian

#11
Welcome dsa,

We are here for you anytime you have a worry or a question. This Forum is a mine of information and a lot is available in the archive . Try the search facility ( which needs improving) or just ask.

#12
Thank you so much.

#13
Hi DSA,

I'm sorry your social services have responded in such a dozy, not to say lazy, way. You might not want to bother with s/s just now but do phone the information/helpline top left It makes me fume when I hear of reactions like you have had from social services. For future reference, when your input into the situation is clearer, I quote from my local County Council's Support for Carers leaflet:-............

"Anyone over the age of 16 has a right to an assessment if you (sic) care for someone for a substantial amount of time on a regular basis under the Carers Recognition & Services Act 1995 and the Carers & Disabled Children Act 2000. You may be living with or away from the person you care, caring full time or combining care with paid work - you will still have a right to a carers assessment. Your right to an assessment is not affected, even if the person you care for is not eligible for services or does not want help from Social Services."

#14
Thank you so much. I think I am going to have a word with Mum and then contact ss again.

#15
Hi dsa,

I am new to this website too and have already felt the friendship here. My Dad is88 and has had parkinsons for 9 years. My mum had emphasema and until she died at 84 was his main carer. Now dad lives in a residential home near me. I would just like you to know that my Dad has managed well with his PD until very recently and many other elderley people without PD were more disabled than him so you may find that PD does not affect your mum too badly straight away. You are a very caring person but take care of yourself and your son as well. Your parents would not want your whole life to revolve round caring for them. Good Luck. x

Buzz

#16
Thank you so much Buzz - It is amazing really....you tend to think you are the only one that these things are happening to and then you hear of other similar stories - it does stop you feeling so alone. Thank you again.

#17
dsa and to all other community members,readin all your posts,on other threads as well,it brings tears to me eys,everyone is movin togeather ,becomin friends and makin the forum a nice place to visit and have the surport we need.dsa and buzz and all other carers who look after there loved ones,wot a great job you all doin,i found with new members that join,a bit confussed with things,wot shall i do,upset,need surport etc.and then a week later there here agin ,talkin ,lettin out there feelins to us,and thats wot it all about,thats how we help one another out.im so happy ive got you all as my friends,thankyou.:smile: