In need of a boost


#1
Hello
My husband was diagnosed with Parkinson's 6 years ago at the age of 54. Since then we have tried a variety of treatments but none seemed to suit so hubbies neurologist suggested he might be a candidate for DBS surgery. Finally after two years of assesmments and applications we heard that the local authority would fund the op and it was carried out last October. It seemed like a new lease of life and although we realised it was no cure or quick fix, we decided we had nothing to lose. Unfortunately over Christmas and now he is worse than he was before the op. He has completely lost his balance and his speech is terribly slurred; he has fallen 3 times. I work full time and cannot afford to give up work as we still have a mortgage to pay and a daughter at uni. My boss is putting pressure on and today, the final straw the PD nurse is off on compassionate leave and there is no other PD nurse available. I have now been signed off work with stress and feel terribly alone. I keep telling myself things will get better. I feel we should be grateful for having had the opportunity for this operation but the aftercare so far has been pretty much none.

Everyone keeps telling me I need to fight to get the care we need but I have no energy left at the moment and my husband is getting more and more depressed worrying about me.

#2
Hi, this sounds really hard and you are doing it alone at the moment. You could see if there is a carers centre near you, who could offer various support (they're very good - Carers UK), and also contact your local social services, who may be able to offer practical and emotional support to both of you. Is there some sort of Information Worker for Parkinson's in your area? If there is a local group or regional office this is worth looking into. Also your local CAB. Your husband should be entitled to claim Disability Living Allowance due to the degree of difficulty he is in - but you must get someone who is trained to help you complete the form, it's a minefield. it is health needs based, not means tested. Your boss is being spectacularly unhelpful. Perhaps if you can at least look into all these areas and get some support you can turn your feelings into something more powerful so people like him can't do you down. You don't need to know what you want from these organisations, just ring them and say what the situation is and request an assessment. Also there are the PD nurses available by phone via parkinsons UK. Best wishes.

#3
I feel like that is a lot of work for you when you are so tired - sorry - but if you can get just one of these organisations on your side they should be able to help you with the rest.

#4
hiya wooderntop:smile:welcome to puk,im ali ive been dx for 11 years and im 42 years old,theres lots of surport here and good freinds to make:smile:i think jo72 has said wot i was goin to surgest,bout ringin the puk website,help line there always some one there at the end of the phone,they have done alot for me in the past:smile:and also about help ,benifits etc,carers comin in to take the strain off you,i have carers,you will need to be asset and be givern a social worker,she then sorts it all out for you:smile:im so sorry the op did not work for your hubby,ive herd many a story about dbs,both ways good and bad,but thats life unfortunally we do anythin to help a loved one,anything.when has hubby got his next neuro app?and wot does the neuro say about the deteration of him so soon after the op?i wish you all the luck in the world both of you,but please for both ur sakes,call the helpline and get some help,keep us in touch xxx:smile:

#5
Hi Woodentop,

Have you tried the PD UK helpline - number at the tope of this page. They are very helpful and understanding. You seem to be saying that you have had little follow-up since the op. I've read that there often has to be quite a bit of tweaking to get things working for the best. Mistakes happen - I mean possibly in the admin. that sets the follow-ups in motion.

Best wishes,

#6
Hi thanks for all your replies. I have called my husbands GP out who now seems to be taking some things in hand and have contacted our local carers group. My husband was due to go back at the end of this month for further 'tuning', this has now been brought forward to next week. Meanwhile I have been asked by the hospital to gradually turn down his stimulator, so I have spent most of the day going up and down stairs every 15 minutes to turn it down a notch. His balance seems to be better and so is his speech but now the tremors have kicked back in. My feeling is that really he should be taken back into the hospital for them to monitor him. If it were not for the fact that I have been signed off sick, who would be doing this?
I understand he is also anxious but I literally just sit down and there is a knock on the floor for something else. He is asking my advice on medication and I really don't feel qualified to make these decisions. If I had been the hospital I certainly wouldn't have trusted me to make the changes to his device, knowing that I am off sick with depression. It seems that it is all being passed on to me to deal with.
Sorry, reading this back it sounds like a lot of self pity and I don't mean it to but I am also not very assertive so find standing up to authority very difficult. I will certainly try and ring the number on this site tomorrow and get some advice.
Once again, thankyou for hearing my whinges :rolling_eyes:

#7
Hi Woodentop
How is your husband getting on now.Have you managed to get any help .I have just had a DBS operation on the 10th of Jan 2012.From reading your post it sounds like your husbands hospital is treating him quite differently from how my hospital is treating me.Would you be interested in contacting me and chating about our DBS operation,comparing notes so to speak.If you would like to you can message me direct or reply on here.I wish your family all he best for the future as my and i wife fully understand what you are going through.