Dear AlaPD...I cry a lot too. At first I was grateful he didn't have cancer or something terminal....now I wish it was...at least there would be an end to the suffering in sight. My husband is not the same man...can't take stress..discuss anything rational. Wants ,y constant attention and then tells me I ignore him! I cannot win, please him or make him feel better so I and pulling away from him so I can stay sane, work and raise my family. My husband is 51 going on 10.
I'm sad a lot and I worry my friends will get tired of my sadness. I try to do things that make me happy....they don't include my husband anymore. It's like traveling with a small child. I need a break from pd..when I do get to go somewhere he tells his family that I have left him all alone with no food or care! He manipulates every one around Him to feel sorry for Him and wait on him. He asks for help getting up without trying. He wants help doing things he can easily do himself...it's maddening.
Then he feels bad for being a jerk and wants to make it up...we are in a cycle of abuse. I'm feeling trapped and hopeless. He refuses to do therapy of any kind to help himself physically or mentally. I'm so angry and resentful. This is my life for God only know how long.
AlaPD My husband was diagnosed with PD 3 years ago, but looking back now I know that he had symptoms of the disease for at least 3 years prior. If his primary care physician had taken more time and been more aware of what was going on with my husband he probably would have been diagnosed sooner. That is why I changed my husband's primary care doc to mine. She is more thorough and aware of subtle changes. Because of this mis-step by his primary care doc, at first my husband's progression seemed to be advancing at an extreme accelerated rate. It was accelerated, but not as fast as it appeared due to misdiagnosis on the part of his primary care doc.
My husband is on one PD med for his gait issue. They wanted to add another med but due to reactions he is having with all the other med's he is on for BP and Cancer, they are reluctant to add any other meds. He is having problems with his BP dropping and causing dizzy spells, fainting, and passing out. He's been admitted to the hospital twice for this, and no conclusions can be found other than PD and combo of meds. So we are in a trial and error process of manipulating his med timings and dosages. The last two weeks have been positive so I think we've found the right dosage and timing however now he is starting to have the "frozen feet" and "stutter turns" again. We can't increase his dosage without causing issues with his BP. One thing most people do not know is that PD affects how a person's body effectively controls BP and other auto functions.
My husband is 64 and I am 56. We had so many plans and our strongest connection was our conversation. We are lucky now to have a 3 minute talk.
I am currently working 3rd shift so I work when my husband is sleeping and home with him during the day. I stay up until he's done with his morning round of pills and then "nap" on the couch until early evening so I can be aware of what he is doing. I schedule his doc appt's on my days off or early morning so I can try to get some sleep on the days I work. It is getting tough and don't know how much longer I can do it. I do appreciate everyone here for understanding because I know that no one understands or gets what we are going through.
Reinrgrl... Your posting hit me especially hard because my husband not only has PD but he also has Prostrate Cancer. He was diagnosed with Prostrate Cancer in 2000 and has gone through every treatment and therapy available to remove and keep this disease at bay. He has been on the last and final treatment for over 5 years, which should have given him only 2 years. It had metastisized to his lungs but the treatment has kept it from spreading and has reduced to nothing - something unheard of for this length of time.
Now he has PD that is progressing rapidly. Given the odds he has battled, I sort of wish he had just the cancer!!
I know what you are talking about referring to personality changes. I see it everyday in my husband. He was an airline pilot and aviation technician. Now he can't even sort socks. I know how frustrating this is for him and how angry it is for him. I see the anger and frustration in his face and actions, and in his reactions to other situations. I know it's not an excuse but men who had jobs that were so mentally and physically challenging and are unable to do them, had jobs where they had to be in control and now can't control the slightest movement, must create so much anger and frustration. Have you tried getting your husband to psychological, psychiatract therapy, or a support group? I tried to get my husband to go and he pushed back for a long time, but eventually I was able to get him to go with the help of his primary care doc. She suggested it in words that got him to listen.
I also suggest that you seek out a support group for spouses of PD patients. I'm not suggesting you change your mind about your feelings, rather you find help in how to deal with how you are feeling. I am just about where you are. I'm not sure how much longer I can stay in this situation. I don't want my feelings for my husband to change, but I don't want to abandonded him either.
I don't know what I would do if I were in your situation, but I offer you lots of support and (((HUGS))), and understanding.