Newbie


#1
:grin:

My ex partner was diagnosed with parkinsons in 2003 but delayed taking medication until 2 years ago, this has not worked well for him. He first became aware that something was wrong in 1994 but refused to acknowledge it, I tried for many years to persuade him and the medical profession that all was not right only to be given counselling and pills myself. When he did recieve his diagnosis two years after we split, I felt as if I had suffered a bereavment, feeling such a loss at all the wasted years of futile suffering and stress on both sides and also a sense of relief and anger that I now had a name to pin on what had been happening.
We had both been through the treadmill because of no one listening to me.
Unfortunately he presented himself with mild physical symptoms to the GP and Consultant, and omitted to tell of the main stuff that could have lead to a more in depth diagnosis, I still suspect Lewy Bodies or Dementia and we now cannot get an MRI scan done as everyone says what is the point as he has Parkinsons. Yes I am back where I started only I am now not well myself and cannot afford the stress that all this is causing me and him as his quality of life is very poor. I would love for him to be on a research scheme and am not sure how to access any such work.Its worse for him than it is for me but I am near breaking point with the fluctuations in his mental and physical ability.

#2
Hi derbyshire drummer, i am so sorry to hear of your plight. If your ex partner thought he had a problem, then he could have saved both of you a whole lot of heartache. I was diagnosed years ago, but the thing I want to tell you is that at that time I had two small children (both of pre school age) and I was married to my first husband, whom I personally think was scared because he knew there was something wrong with me but would not accept it. He became very violent towards me , blaming me of tricking him into marriage just so I would have someone to look after me. He refused to let me leave the house because he thought I was going to go to the doctors or report him to the police. Yes, I was very scared because I knew there was something not right with me. Of course he blamed me and on our wedding night he raped me. I fled the hotel with one bag of clothes 2 small children and still in my nightclothes with tears rolling down my face I headed straight for the nearest police station. To cut a very long story short, I do not want to say any more about that first horrendous few ,months. But, I was soon diagnosed as having PD and was put on ,medication and soon felt human again and worthy of being me.. I am now very happily married to a lovely man and both my children refuse to see their dad (their decision.) and have both done well in their chosen path in life. So take heed,my love., whatever the beginning, their can still be a very happy ending. My Pd is being controlled reasonably welll and I am very happy with my life. And PD is like another member of our famiy now.So please do not despair because their is always hope and a light at the end of every tunnel.

#3
[:: biggrin::]
Blue Angel, your a Inspiration to others ,the pain and terror you must have
gone through to reach your safe haven and begin your life again, this to me
indicates very strong resolve and is almost a carbon copy of my life from
1980 to present day, and as you also were suffering PD this would make your
fears greater .
Best wishes to all new members,you will find many friends here
fedex

#4
hi DD
there is definitely a problem with partners input into meetings with health profs, especially where mental issues are concerned.

#5
Thanks for all the replies and I can appreciate that there are others who have and are suffering more than us

Yet again he seems to have slipped the net, after months of trying to convince anyone in the medical prpoffession about my concerns that mmy ex was displaying sypmtoms of dementia, we got a referral to can you believe it..... The Doctor for OLD AGE pyschiatry.... who thought of that title? the appointment was for early Nov 2012... it got cancelled and cancelled... and on jan 7th 2013 we finally got to see the house DR. yes an assessment was carried out and we were told that the results would be handed to the consultant for his perusal and that my ex would be having blood tests and a follow up appointment........two weeks ago we recieved an invite to attend a Dementia Information Course from the local Hospital The letter Heading read from the Dementia day care Unit.....I was so shocked that this had landed on the mat for my ex to open when we hadnt even had a letter from the Dr or heard anything about the bloood tests....I rang the Unit and asked how they had got the referrral and they gave me the impression that they too were shocked that there had been no formal diagnosis given to us..... I was told that they would have a word with the Dr and get back to me.... I rang the Unit again next day and was told that the appointment would be made to see the Dr when they had the blood test results.... but we havent had any thing to say where and when for the tests. Just come along to the Course and it will all be done by then via the GP.. Today we went.... it had been cancelled due to snow and they say they rang to tell us and left a message on the answer phone.... but we were in all morning.....yes they had phoned my house as I found out when I got home not my exs..... I explained again about the bloood tests and was told to visit the GP surgery in the way home to find out why we hadnt heard as they had been sent a lett on the 11th jan... of to the surgery and they said letter recieved 21st jan signed as seen by the GP.. but not acted upon... ie to send for the patient to have the tests..... is it any wonder I feel the strain.... its bad enough being the carer for someone with early onset PD withput doing battle with the medics