New member first post


#1

Hi all.... i found this group and joined today.. and would like to post my story, please help !!

 my husband was diagnosed a month ago with idiopathic parkinsons disease, and we too have a holiday coming up in may.  To my utter surprise my husband has taken the diagnosis very very well.... but he has no idea what the bigger picture contains, which is good news..... however.. its me thats fallen apart.... i have been with my husband 36 years and thought i knew him inside out.. that was until 3 years ago, when he totally changed.. was non empathic, very apathetic, was disrespectful and non grateful for all i was doing to help him.... yes it caused a major rift, he was unable to see things the way i did, and was unable to feel apologetic for his wrong doings..... i of course was devastated and so so upset...... it was like living with a total stranger, he became someone i didnt recognise.. and of course for me.... the hurt and upset continued as i watched him self destruct and take everything with him along the way.  I visited his doc ( who is my doc) and discussed these aspects with him, her agreed it came across as selfish and suggested counselling.. i got my husband to visit the doc and he suggested he take antidepressants, which my husband refused... since then life carried on.. i tried so hard to put up and shut up.. but the hurt and upset remained.... the hurt he never saw or acknowledged.... Then the head tremors began, the bradykinesia.... does anyone here know if apathy and this form of behaviour ( non motor) can be the initial symptoms of PD???  i can get no conclusive answers from the medics, and the not knowing is tearing me apart.

What will i do??? i will go and enjoy my holiday.... after my husbands diagnosis he went into town and treated me to a two week holiday to aruba...an island i always craved to visit, as a treat, he said it was his way of making amends for the way he had treated me, which was so so nice..... yet promises to change dont materialise and life continues.... i think i just have to accept that this is pd and not my husband, and maybe in time with support i can adapt and continue to take care of him..... can anyone shed any light on this??? i so feel for all sufferers i really do..... and now i also see the other flip of the coin.... noit only does pd affect the sufferer.... it affects everyone around them... wives included xx


#2

hello anjo, my wife tells me were take every day as it comes parkinsons affects  many people in different ways and there is alot of good meds out there,when im having a bad day my wife tends to stay out the way untill ive got my self sorted,have a nice holiday and only talk about his pd when he wants to.well thats what works for us! maybe someone else could help nice you've found us tho.


#3

Hi Anjo,

I have just shown your post to the wife, and she says she saw the change in me twelve months before my diagnosis, and sympathises with you. I have been diagnosed for four months, I have three sons and a daughter and you are right PD effects everyone around you. As Gus says there are alot of good meds out there and hopefully they will sort your husband out. Have a lovely holiday and try to relax here from you onn your return. rams57


#4

So pleased i found this site... its good to be able to talk to others who understand all of this.... this is so new to us both... but i came here today to tell you all im now worried again, not about tremors and the such.. but we had an apointment with a parkinsons nurse yesterday where i was asked to get involved and discuss the symptoms that alerted me to the fact that something was wrong.. i proceeded to tell them about his past behaviour, disrespectful, non empathic and basically downright almost narcisstic, like he didnt give a damn for me or anything, his whole personality changed..... the nurse looked at me in amazement and proceeded to tell us both that these symptoms are not consistent with early onset parkinsons disease..... although he does have symptoms that suggest that he does indeed have parkinsons....... im fearful now as we await the brain scan.... if its true and this is not parkinsons disease .. what else are we looking at????

Is there anyone here that had personality changes as early onset symptoms, anyone else behave in this way???   

Im sorry to write again so soon after joining this group but im scared....


#5

Hi Anjo,

First do not be sorry about writing on here, that is what the forum is for, support. I am no expert on PD, there are alot of people on here who are more experienced than me. In my case the wife said I got moody, lazy, everything was too much trouble and I was anti-social. My symptoms were hand tremor and inner tremor down the right hand side, balance problems and slowness, also pain in muscles in my legs and toes. After starting my meds hand tremor and inner tremor ceased within the week. If things start to improve with medication the diagnosis is likely to be PD. You do not state whether your husband is on the meds at present. i wouldnt worry too much about the brain scan as i think it is part of routine for the diagnosis. Try not to think to far in advance, just take it day by day, that way I think it will be easier to deal with. Good Luck rams57