My Brother


#1
My brother was diagnosed with Parkinsons disease 4 years ago when he was 43. His symptoms have gradually worsened and his consultant either increases his dosage of medication or suggests that he reduce the time between taking his medication.

He still remains active, he walks daily, he plays table tennis, he skis in the winter and he works full time. In fact he never seems to stop. He lives with my parents.

However, over the last 12 months we have seen a change in his personality and attitude. He has built up a large amount on his credit card, he has borrowed money from my father that he hasn't repaid, but doesn't seem to have anything to show for the monies being spent. He is secretive and becomes quite surly when he asked about his whereaouts. My mother has discovered obscene messages on his phone and has come across pornographic films in his room and has her own suspicions about how he is spending all his money. My father believes that the fact that he has this illness is an injustice and believes everything my brother tells him and lets him get away with anything. He desn't take any responsibility for his illness, my parents remember to get his repeat prescriptions and he just seems to take all this for granted.

My parents are elderly and don't know how to deal with this situation. I act as a support to all of them. We need some advice on how to tackle his behaviour and how to best help him. I have read some of the details on this forum and it is worrying how these things may develop. We are a close family and this is destroying us.

#2
Hi Lozdom.

Your brother is on the edge of a precipice. He is probably being prescribed drugs from a group known as "dopamine agonists", and although these are good for alleviating PD symptoms, they also cause potentially disastrous Obsessive & Compulsive side effects in 25% of recipients.

I was one of the unlucky ones. I was completely ruined by such a drug, losing £2m in all as well as losing career, home, family and friends, as well as getting divorced. I also got violent and had several run-ins with the police.

This link takes you to a related press article:

http://www.telegraph.co.uk/health/healthnews/6446763/Parkinsons-drug-made-former-councillor-carry-out-45000-eBay-ticket-fraud.html

There are hundreds of posts on this forum about people whose lives and finances have been totally wrecked by dopamine agonists, take a browse around. I also posted a poem called "Ray's Tale" here a couple of days ago, describing my exploits.

There are scores of different obsessions these drugs can cause, and most affected patients suffer from several. The most frequent are gambling, over-spending, hypersexuality, affairs, crossdressing, porn and violence. Most become secretive, devious and aggressive, and deny everything, claiming there isn't a problem.

Your brother needs to be deprived of any access to cash whatsover - his own or others', or he WILL lose it ALL. And plenty more besides.

Get him to a specialist A.S.A.P. Not just any old consultant neurologist but one who spcialises in PD, and who is bang up-to-date on all the latest drug information and research.

And show these posts, press articles and other cases you uncover TO YOUR BROTHER. Also to parents, relatives, friends, nurses, GPs and consultants - they need to be warned. They probably won't believe it, but they need to.

Good luck, keep us posted.

Ray.

#3
I agree with all that Ray says about the OCD. The biggest problem however is that you will continue to see and judge your brother as the person you once knew. He is no longer that person. What you see is the envelope but the contents have changed. When you mess with a brain the personality changes and with that comes the need for you to understand the changes.He is aware of what he is doing but is resigned to the need to feed his compulsion and will continue to do so until his medication is altered to return a semblance of his old self.
The downside of all this is that in my experience the only people who truly understand are the 25% of PWP's who have journeyed that road. The good thing in this instance is that you care enough to ask the questions and you now have the answer. Follow Ray's advice and do so asap. His old self may never return but you may find that most of his compulsions come under control and that he stops hurting those who love him.
Walk a mile in his shoes!

#4
What is the alternative to dopamine agonists?

#5
Usually drugs from the Levodopa ("L-Dopa") group. Your consultant will know.

If you trawl this forum you will find that for the last few years the topic of DOPAMINE AGONISTS and their side effects has been by far the single biggest concern here.

You can also trawl the internet generally, and the websites of all national and local newspapers. The number of disastrous cases will seriously shock you.

#6
Hi Lozdom
Just to say that my husband followed the path your brother has taken because of the huge doses of requip XL he was prescribed.
This drug is one of the dopamine agonist group.
Our lives were all but ruined and Ray and others rushed to our rescue on this site.
Ray's advice is to be trusted.
We followed it and 8 months later our life is becoming more normal and the dopamine agonists are gone forever.A new regime of levadopa is beginning to have results but the withdrawal was painful and life very difficult for some months.
Please act as soon as possible to alert all involved and get help.
Our Parkinson's nurse, who we had never previously met, was a Godsend.
I send my love and hope you find the strength to act quickly before things get worse.
x

#7
Thank you to all of you who have repsonded. Its taken some courage for me to ask these questions, but it is conforting knowing that there is some support.

My next step is to approach my brother with the details and perhaps contact his Parkinson nurse as well, as I have a feeling he will deny any issues and i do know that when he sees his consultant he is told that everything is ok!!!

Thank you again for the help and information

#8
Hi.

Try to see the nurse and consultant first, and get them on side. Both by now must surely at least KNOW of the existence of these OCD side effects, AND how devastating they can be, even if they've never encountered them personally.

Without doubt your brother will deny EVERYTHING, that goes without saying, so you and the medics need to be as one. Approaching him on your own, with no medical support, would be difficult.

As well as all these documents and articles, it would really help your case if you had something specific to show them such as credit card or bank statements showing out-of-character expenditure, loans, receipts, betting slips, etc. You can also use these later when confronting your brother.

Don't forget that doctors are usually arrogant buggers and don't take kindly to being told by us peasants that they may have got it wrong just once. And neither he nor the nurse is under any obligation to talk to you at all: you are not your brother's next of kin, nor getting involved at his request, and they are bound by patient confidentiality rules, etc.

Nor can the consultant change your brother's medication without the latter's permission. Every change has to be recorded on his medical file, with an explanation.

Keep us informed.

Ray.

#9
Oh, I forgot to wish you luck!

Not many would take on such a daunting challenge, your family are lucky to have you.

Ray.


:grin: :wink:

#10
Hi again.

For info I've set up a new thread about Dopamine Agonist related compulsive behaviour, in the "Treatments" section.

Can you put all new posts on this particular subject into that thread, please? That will ensure all future discussion is stored together.

Thanks,

Ray.

#11
We have finally done something - I read an article recently where a lady who was taking pramipexole built a cedit card debt of over £37,000. I showed this to my mother and told her to show it to my brother - he wouldn't acknowledge it!! My parents have since then tackled my brother and typically he denied that there was a problem, even when shown the evidence. I tried to contact the Parkinsons nurse at the hospital where he was registered, but was unable to get a response. We really were getting desperate. My father has just been diagnosed with cancer and my mother is at her wits end with everything.(we all are!!)
My brother's 6 monthly appointment was today. My mother and I wrote a note to the consultant to explain how my brother's behaviour has been and this morning, before the appointment I was able to get through to the nurse and explained to her his behaviour.
His consultant has nominated him for surgery - is this a solution? It feels as though we have been listened to and we are hopeful that things might change, or are we expecting too much? Just to know that our worries have been considered feels like a weight has been lifted.

#12
Hi.

Deep Brain Stimulation is a surgical method of dealing with PD symptoms, but it's far too early (in my opinion) to be considering such a drastic route as that. The consultant seems to be jumping in at the deep end, fully clothed, where he should just be dipping in a pinkie!

Every consultant's contract obliges them to explain all the possible options to the patients, and all possible side effects. The consultant Neurologist in this case cannot start or change any drug regime without the patient's permission. If you're not happy with your consultant you have the right to ask your GP to refer you to a different one.

When you first contacted us I replied with a long-ish post, the first paragraph of which said:-

"Your brother is on the edge of a precipice. He is probably being prescribed drugs from a group known as "dopamine agonists", and although these are good for alleviating PD symptoms, they also cause potentially disastrous Obsessive & Compulsive side effects in 25% of recipients."

[u]YOU MUST TAKE THIS SERIOUSLY.[/u]

Every aspect of your brother's changed activities, personality, behaviour, attitude, spending patterns, deviousness, libido, etc. is 100% typical of the Obsessive/Compulsive Disorder (OCD) side effects of drugs in the "Dopamine Agonist" (DA) group. According to the latest research figures published by the Mayo Clinic in Rochester USA (one of the world's most respected research institutes) in Feb 2011, 24% (1 in 4) of PD patients who are given DA medication will develop OCDs. If they do so, and remain on DAs for a while, it could destroy him easily and totally.

I myself got through £400,000 in a very short time, and lost my house, job and family. There are scores of members on this forum who have lost massive amounts: £60,000, £80,000, £100,000, etc. When a seriously powerful mind-control drug takes over your head so completely that you REALLY can't tell right from wrong, cash can drain away like water.

Forget surgery, this is a medication problem. It will be necessary to identify which of the drugs he is being prescribed belongs to the DA group, and GET HIM OFF THEM PRONTO. After the body has adjusted to that (a few days), the Neuro can choose an alternative regime, with NO dopamine agonists in it!

Lists of all the DAs can be easily found on the Internet with the usual search engines. They are also in Wikipedia.

Your brother will fight against losing the DAs, because they provide very pleasurable experiences, but he must be FORCED to give them up if necessary, or he'll sink like a stone. Until he stops the DAs, remove as many sources of financial funds from his accessibility as possible.

GET HIM OFF DAs NOW !

Ray.

#13
Lozdom[/b, hello just last week I came across this forum and believe the guyd and girls on here are a God send to me and my family. I have a brother going through the same OCD's as your brother with afew more added. it is hard to watch someone you love turn into sombody you don't recognize any more. Raymade me realise that it is not my brothers fault even though in my head I feel my brother is using the drugs as an excuse he said he had stopped all drugs but God forgive I find it hard to believe him. I am trying to do all the members have told me to do but I feel total anger at him because his wife is not in hospital and is nearly at breaking point, his children are now scared of their Dad and we are frightened for them.

I wish you well in the task we both are facing for the love of brothers,

Take care

Radz

#14
P.S. please forgive all typos my fingers are not doing what I ask of them:grin:

#15
Hi all.

Radz, when you say (above) that his wife is not in hospital, was that a typo? Should that really read NOW ?

Ray.

x

#16
Me again.

From now on can we continue these discussions in the TREATMENTS section, under the thread: DOPAMINE AGONISTS AND CATASTROPHIC OBSESSIVE/COMPULSIVE DISORDERS.

Thanks.

#17
Yes Ray a typo SIL is in hospital. on Skype with my sisters be back on soon with update.

Radz