Hi I am a new member


#1
My husband has PD and has been suffering with this debilitating disease for 34yrs now! He has managed to maintain a good lifestyle and his stubborn nature has stood him in good stead, along with his brilliant sense of humour!! I have been with him all the way,supporting, caring, raising our family and trying to research and discover all there is to know about PD. Our situation has drastically changed over the past 5yrs and now my wonderful husband in no way resembles the man I fell in love with and married. He is in the last stages of PD and at our last appointment with the neurologist we were told that they are going to slowly withdraw his medication as he no longer gains benefits from them and suffers so much through the side effects. He has become quite aggressive in his behaviour towards me and now is suffering from either PD dementia or PD with Altzeimers, doctors want to test for which one, although we've been told the treatment for either is the same.
9yrs ago Tom made a decision that totally wrecked our lives, he wanted a separation, to pursue his new addiction to internet porn which totally devastated me and the children,this was not my husband at all and totally out of character. Obviously I have since found out about PD and punding and ocd behavioural disturbances. We sold our lovely family home and bought 2 separate houses 5 miles away from each other in a totally new area. I had no contact with him for 9 months, then he begged me to go and look after him as he was struggling with almost everything, the children were adamnant that I shouldn't having felt their father's abandonment badly.
I felt so sorry for him that I became his chief carer, and now 9yrs on I fulfil all his needs from shopping, washing him, cooking etc etc, He has declined rapidly during the last few months and now we have reached this stage where drug withdrawal is imminent. To say I am exhausted mentally, physically and emotionally would be a gross understatement, but I will continue to look after him to the very end.
Am sorry for this essay!! but it's hard to write down in a nutshell what has happened but I am looking forward to reading about all of your situations, thoughts, tips, and hints and funny anecdotes to keep me going and maybe shed a few tears with you, but I never ever want to give up supporting him and caring for him. Thanks for listening to me. x

#2
What a wonderful person you are medabet.

#3
Hello and a very warm welcome to the forum Medabet. What a good person you are, your husband is a very lucky man indeed to have had your care and support all of these years. I would be very interested if you could recall what medication he was taking during his OCD period? As you may be aware there is a thread on the forum which discusses the effects of DA's and I think that it might be helpful for you to read and if you are not aware already, you will understand that there are many of us here that understand just what was going on for your hubby during those awful days. There also carers on the forum who are currently experiencing what you had to deal with during that period of your hubby's condition and they may benefit from your advice.

I have been dx for 11 years now and I and my family are still suffering badly from the effects of taking DA's both emotionally and financially.

May I ask why it has taken you so long to join us? Not that it makes any difference to your becoming a part of the forum now, but I guess it's my own inquisitiveness.I know for certain that had I been in your situation I would have been screaming out for support from people that had been there and wore the T shirt, long before this.

You have all of my admiration and my very best wishes for your and your husband's future, however whatever you have to face, be sure that you will get lots off support on this forum.

Take care and I hope that we can chat along the way.

Glenchass

#4
Hello and welcome to the forum MEDABET......your story is like a mirror image of that of my brothers sad life at the minute. How on earth did you cope through those years....I can only hope you have had the support of people close to you.

It is good that you have at long last found this forum. You will read of other peoples hardships, as well as help and advise from or wonderful band of members.

As Glenchass have said, keep posting and hopefully we can chat along the way.


Much love to you and your family

Radz xx

#5
Welcome Medabet,
Glad you found the forurm. Hope sharing your journey here brings you comfort and strength and smiles. Best wishes to you and your family, Lin2

#6
Welcome to the forum Medabet!!

Yours is such an amazing and a very emotional story. Your husband is lucky to have you. 34 years with a chronic illness, my heart also goes out to your husband. Hope you will join in the discussions on this forum.

Well done again and best wishes to you,
rico

#7
Have I missed something? I have read so much about the devastating effects of the side effects of certain medication for PD either on this forum or elsewhere but still the medics continue to prescribe with no warning to patients, no monitoring and NO RESPONSIBILITY. Why are they and the drugs companies not being held to account? Why is Parkinsons UK not carrying out studies on the numbers of people affected (and their families)and the depth to which they are being affected? In order to get any alternative treatments or therapy for PD we are continually being told that NICE needs empirical evidence in order to approve a drug or treatment, or we can't have it. There is plenty of evidence (it would seem) that lives are being destroyed by certain DAs yet they continue to be prescribed with impunity. Why? :question:

#8
hiya medabet,welcome to the forum:smile:first of all i would like to say im sorry wot happinined to ur hubby,these meds have so much to answer for ,rippin peoples lifes apart like that.im ali ihave been dx for 11 years in november im 42 years old:smile:its nice to see u on the forum ,and i hope it can give u the surport u require,there is loveley people on here and there for one another:smile:,u have surported ur hubby through so much medabet:smile:and even as it stands now as ur his main carer ur standin by him still,i take me hat off to u:smile:both my parents were very ill,and i have a servere handicapped bruv also,i did so much for them before dad passed on ,now i have this rottern disease i carnt give the same attention to my mom and bruv as i would of to dad,and i got guilt for some reason cus of my health gettin in the way ,carers do so much for there loved ones ,and some are not reconized till we have some one like ur self comin on here and tellin ur story ,which takes guts,so well done u x:smile:

#9
Hello chrisse w

This link will take you to the Parkinson's UK webpage on work which is taking place currently linked to impulse control disorders:

http://www.parkinsons.org.uk/about_us/policy_and_campaigns-1/campaigns/compulsive_behaviour_awareness.aspx

I hope this is helpful.

Luis
Moderator

#10
Might it be a good idea to put chrissie w's excellent post & luis' helpful reply into the DA/OCD thread? If thought appropriate, could somebody who knows how do the deed, please?

#11
Hi AB thanks for your support. I will look at the link, but I am a bit slow on my new computor. Everything is different. I lost a lot of info thorugh not backing up properly, but even if I hadn't (lost stuff), getting used to a new system is a b... nighmare. Keep making the same mistakes. Everything in different places. I had not appreciated how dependent I was on the system I had got used to!!! Anyway, moan over. I have got on to the virtual policy panel, so would be happy to take this forward but need some guidance. Maybe wew could keep this going but in a different place? This is not the right ... um... section? thread? whadayacallit?
All the best, Chrissie

#12
Hi Thanks for the advice I have checked out the link and will definately respond. Regards Medabet

#13
Hi Chrissie
I am in a similar position to you in trying to deal with the devastation caused to my husband by DAs.
The PDUK response is encouraging, although too late for the likes of us but where in their plans is any attempt to stop the drug companies from peddling their wares with warnings that are brief, inaccurate and untruthful ( OCDs are a rare side effect)?
Scientific evidence is plentiful that 1 in 4 suffer catastrophic OCDs on a therapeutic dose.
We desperately need a class action organising to take on these people who continue to benefit financially from wrecking so many lives.
All the love and strength in the world in coping with such sadness.
x

#14
chrissie w, I think that your post was in just the right place in response to medabet's introduction of herself & her tragic situation. But I would also like to see it in the OCD thread (treatment section-Dopamine Agonists & obsessive Compulsive Disorders), Along with Lois' response. The reason being that not everybody reads the Meet & Greet. People concerned about DA's & OCD behaviour will tend to home in on the treatment thread.
I have known posts to be miraculously (to my mind) left in situ & at the same time transported elsewhere. I have no idea how this is done. I leave it to those with greater skills.
I hope that I am making sense. It is not something that I wish anyone to be concerned about - just an idea