Discovering Parkinson's: A Spouse's Story

Member for

6 years 11 months

I am not yet a caregiver and I don't know how long it will be until I become one.  My assumption is that is a gradual process, just as the disease has been a gradual one, thank God.  Gary was diagnosed 3 years ago at the age of 54.  He had symptoms for years but always thought it was something else.

It was a tough time in our lives three years ago.  Gary was beginning to consider getting out of the Army, he was an Army physician.  He was quiet, well, he has always been quiet, but at that time he really kept to himself.  I was struggling with this.  I needed communication, I needed my friend!  I was lonely and bored and was struggling with how I could keep this non-communicative relationship afloat. 

It was a Saturday in July and it went something like this: 

“Gary we need to talk, I just don't know how much more I can deal with your quietness and your lack of communication.  I need so much more in my life.  We are living outside of Washington DC and I know very few people and I am struggling with friendships, especially ours.  I cannot take this anymore!”  I said. 

I then told him, “I want US back!  Our children are grown and out of the house and we should be enjoying time with each other and it's just not there!  I want one of us to move out.  In saying that, I want to date YOU!  I don't want to be with anyone else, I just want to start getting to know you again.  I am miserable.” 

I walked out, and walked up to our bedroom, very upset, as he didn't say much to me.

A few minutes later he came up the stairs into our bedroom and he was crying. 

He said, “Jane, you can't leave me now, not now!” 

I said, “What do you mean not now?” 

He said, “I think that there is something terribly wrong with me.  I have had symptoms for a while and I think I know what it is.  I think it is Parkinson's Disease.

I was furious!  He had these symptoms for a while?  He had been worrying about it for a while and he didn't tell me?  I said that to him and he was pretty hurt that I wasn't sympathetic to what he was saying.  Of course I was concerned, that was without saying, and very worried, but I felt that he didn't need to keep this all to himself.  We talked for a bit about it (as much as he was willing to talk at the time) and we made the decision that he needed to make an appointment with a doctor to make the diagnosis. 

We would go from there.

I didn't move out, but I didn't back down either. We needed to get our relationship in order if we were going to face this disease and the rest of our lives together. 

We found a counselor and met with her once a week for several months.  We also started going out once a week, just the two of us and called it Date Night.  We started to read books to each other.  We tried everything, and I will tell you it worked!  At first Gary told me that it was very difficult process for him, trying to open up and talk, but as time went on he admitted that it wasn't as challenging to come up with conversation.  He was adapting and it was such an important and critical time in his life and mine to do it. 

The diagnosis of early onset Parkinson’s came and he was told he was in the early stages.  I did a lot of online research to find a Parkinson's clinical trial in the area.  I found one at George Washington University, Medical Faculty Associates, which is where I am employed as a Registered Nurse.   They were testing the drug, Rasagaline (Azilect), and it's affects on recently diagnosed individuals to see if it will slow the progression of the disease.  He was in the trial the entire time, over a year, and is still taking Rasagaline and we are in agreement that he most likely was on the medication and it did help in slowing the progression of the disease.

During this time I felt we needed to find a support group in our area and was in luck to find a great one!   I feel that this has been very beneficial for Gary.  He has a lot to offer the group, being a Family Physician.  The group asks him many questions and I think he enjoys being able to share his medical expertise.  The group is for individuals with Parkinson's and their care-partners.  I attend some of the time, but feel that he having his own group may be more important for him.  To be honest, it is painful for me to go, as I can look around the room and see firsthand how the disease can and will progress. I will, of course, attend these meetings with him, but inside, I am struggling to cope with this reality.

Here we are, three years later, July 2009.  Gary has transitioned out of the Army, and is working for the Office of the Secretary of Defense.  Is the disease progressing?  Yes it is, but to our relief, it is still a slow progression.  He is now added another medication, Pramipexole (Mirapex), and may have to increase that soon, but he still works, lives an active life, and is constantly puttering around the house on his days off! 

I am not yet a care giver, though I do know that day will come, and I am preparing for it as much as one can prepare. I am a wife that has truly grown up these past three years. I am enjoying sharing my life with a wonderful and much more communicative husband and friend. 



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