How many of us have lost a spouse or significant other after diagnosis? How do you deal with it? Has anyone remarried?
My wife of 26 years walked out the door with 2 hours notice, she packed a bag, up and left last July. The kick in the teeth is since our divorce she gets half of my pension! I have half and social security. I have had 2 suicide attempts since then, numerous periods of depression. The emptyness is immense. My daughters are grown, they are 24 and 25 yrs old. One lives out of state near my ex-she went up for a visit and found a job so she stayed.
The other daughter lives with me to finish school. She is very aligned with her mom and not very communicative with me. She will probably move when she finishes school in June. In addition my mom had brain surgery in Feb. and is now living with me, my siblings either do not have any room or they are too distant.
PD has me now to where I lost my DL, the doctor would not complete the medical form to allow me to take the test. My balance is bad, I stumble all over and fall often. I use a powerchair and a walker constantly. I have had PD for 15 yrs now, diagnosed when I was 30. I am 45 now. I don't see myself marrying again, nor do I think I will ever have the pleasure of holding a woman again. It has been 8 mos now and I am still crying.
Not to mention the guy she left me for was "back home", when she got there she found he has no license-DUI, is an alcoholic, has pancreatitis among many other health problems. She has been evicted for not paying the rent twice-she gets almost 2200 a month between my pension and her social security-she got ssdi for anxiety attacks yet I don't know how she managed to travel some 400 miles when she told them she cannot go out of the house without significant medication.
So as such I don't get out much. There aren't any programs that I know of unless you are a senior citizen, even then it's slim. I just can't see things getting better but somehow I have to carry on.

Yesterday I raked leaves on my knees so I wouldn't be falling down! Fun huh?
It sucks!

But ya know what? I would have her back in a minute! Still.

Jim, I am sorry to hear about the tumoil in your life..Sometimes it is hard to let go..Recently my girlfriend moved out..Mutual agreement..My symptoms have dimished considerably over the past 2 months since she moved..Stress, worry, pressure, anxiety, depression, heartbreak etc, make symptoms much worse..I got sick and tired of being critisized for everything I did, and constantly being questioned about what I was doing, why I was doing it, when am I going to do it, and BTW, dont do it this way, do it that way..When I had bad days, sometimes I was told to "pull myself up by the boot straps"..Yeah right!!..How do you do that when you dont have enough strength to take your socks off?..Or call the Dr everytime time I had a bad day..Pd is what it is, and there are going to be bad days, thats just the way it is, and she doesnt get it, and by running her mouth about something she knows nothing about, just makes a bad day worse

Im am 58, and going into the 10th year since my first symptom, and I made up my mind that Im going to do the best I can, to enjoy life, while I still can

The time some people take away from us cannot be refunded..My philosophy on this ***** is.."Let go, or be dragged"..Easier said than done, but when I got there, I felt like a bird being let out of a cage

My ex was not a support person either. She was just there physically, she suffered from depression, anxiety and had problems with her weight. She would be in bed for days on end. I did all the shopping, errands, cleaning, etc ALL of it. She did not even cook! You would wonder at why I would be so attached but I still love her. I lost 20 pounds when she left me. She was not intolerant of anything about my PD-if I couldnt do it, well it would wait till I could. She was more resentful of PD. Once I quit working 2 jobs I wasn't able to get around and do things. I know that God is preparing me for the future, I just have to have the patience to get there. I have always had a healthy and positive attitude. So much that sometimes you get tired of hearing others marvel at how well you're dealing with all this. Do you still work Steve? I was a firefighter/paramedic for 15 yrs, worked for 3 after I was diagnosed. Now I'm on SSDI and half a pension.

My personal email is Jscheuerman@cfl.rr.com, I'd like to keep in touch with ya if you're up to it.

Jim

WOW!, Jim091866. I feel for YOU. I was DXd at age 38, with symptoms at age 34 in 1996. Eventually, I lost everything - health, 2 jobs, marriage, 401k, ability to play music, car, home of 20 years. I now live in a crappy 1 bedroom apartment. Actually, I don't really "live". I just "exist" - mostly in front of the TV, sitting there "remembering" and longing for better days. Yeh, a couple of suicide attempts for me as well. I took whole bottles of xanax & ambien, etc, enough to kill 3 or 4 people, but it barely phased me. I have no idea why I'm still alive. I guess it's going to take a Mack truck to do the job, which isn't entirely off the table. I am trying to keep my head up, tho. I just try to look forward to a better drug/treatment. Been screened once, so far, for DBS thru the VA at San Francisco. They told me that I drink too much to qualify. They said they didn't want me to fall down drunk and break "their hardware". Made me wonder exactly "when" does "their hardware" become "my hardware"? I was more or less under the impression that it would be all MINE as soon as it was installed. So, they tasked me to complete a 60 day 12-step program--3 days per week for the 1st month; then, 2 days per week for the 2d month. I told them that if I could commit to and achieve that kind of schedule, I'd hardly be "disabled", and I'd have a job. I don't even have a car.
My old VA doc just retired, and I have a new neurologist at the VA. She has set up an appointment (today at 2pm) for me to see a DBS specialist right here in Indpls - at the I.U. Medical Center. I'm thinking things are going to be different this time. I've cut back on my drinking. At any rate, I'm still not especially enthused with the whole DBS thing. I am, however, keeping an open mind about it. Actually, I'd much rather try that treatment developed by the now defunct German firm--X-Cell.
Keep your head up.

I was a commerial fisherman for 35 years, and I still fish part time

Hey ToyL,

It's just my opinion but I would wait on the DBS, the intestinal gel is supposed to be out of clinical trials and possibly marketed sometime within the next year-as in early 2013. I had DBS and I still take the exact same dose of meds as I did prior to surgery. I don't have a tremor. I am told that people with a tremor do much better because it is easier to target the leads. I have been offered repeat surgery but declined since I am waiting to see what happens with the duodopa.
Aside from that I wish you the best. I was not in the service but I strongly support our men/women in uniform. Thank you for your service.

Hello guys,
May I join in this conversation? Jim, your story is not uncommon for couples when one has Parkinson's disease. It seems that more and more "couples" are getting together who BOTH have Parkinson's. This is usually after a bad relationship. I suppose no one can understand each other better than those who share this illness.

I have an opinion as to why some relationships turn sour after one is dx with Parkinson's. And this is just from my perspective, having lived with PD for 18 years. This is such a difficult disorder to understand - even those living with the disease have trouble understanding it. One minute you are able to do about anything; the next you can be like an invalid. I am sure that some spouses think their partner is faking it at times.

And our nervous system and emotions are so on edge. I cannot tolerate some things that I had no problem with years ago. I am sometimes snappy because I don't feel well, and I have become so impatient!

People with PD sometimes feel as if we don't fit - we shake or flail our arms and walk "funny." I try not to let it bother me, but I often see people staring when I get excited and almost fall over because of the stimulation. I know that I appear "drunk" at times. In fact two of the national organizations have a Medical Alert card that says: "I am not intoxicated. I have a disease called Parkinson's." then it will give an emergency contact.

Kids are so honest. When I was still teaching, students would ask me why I made such funny faces, or why I walked like I was dizzy.

I know that some of you have wonderful relationships in spite of the differences after diagnosis. I have been married to the same man for 42 years, but it is something we must work at constantly. I get emotional and cry over the silliest things. Many people with PD have depression, which can put a major strain on relationships.

I am sorry you couldn't hold your marriage together, and know that it is NOT your fault! None of us asked for this. I would suggest to anyone to seek counseling as soon as you have a trace of problems with your partner.

You'll be in my thoughts and prayers.
Peggy