Category Archives: how family reacts

What I Learned About Myself Since Parkinson’s Disease Diagnosis

The following is an e mail from Terry I received permission to post.

In June 2008 I sought medical attention for the chronic fatigue and depression I was feeling after losing my job of 18 years, a close friend, my beloved cat and my apartment.  On September 17, 2008 a neurologist told me that I have Parkinson’s Disease.  This beginning of my PD journey, barring a cure, will last the rest of my life.  There’s always the optimistic hope that a cure will be found, but realistically, we will he fighting this thing for years to come.  Yes, we will continue to benefit from new treatments, drugs, perhaps surgery, gene therapy and results of all kinds of research.  But it’s not going to be over tomorrow.  So dealing with the emotional side of having PD is something I need to face.  I learned a lot about the condition itself and its various treatments, but some of the most important discoveries I made were not about PD itself.  Here are some of the things I learned about myself and others in my first 9 months of PD.

1.   Attitude is important.  Striving to maintain a positive attitude will affect my experience with Parkinson’s.  For sure, facing up to the consequences of PD and dealing with the issues it presents effectively will be the key to maintaining a positive attitude that is vitally important.

2.   PD is not my life.  I have PD and I am now realizing it is inevitably going to have a significant effect on my life, but I am working hard to not have it be the one focus of my life.  I am going to carry on doing things I enjoy and although these may be affected by my condition, I am working on a balance.  For as long as I am able, I will not let it be the one dominating thing in my life, as it was when I first was diagnosed.

3.   I am in this for the long haul.  At first I was in denial after the diagnosis then I was hungry for information wanting to know as much as possible about PD.  After a short period of time, reading everything I could on PD, I suffered from information overload and now pace myself a little better.

4.   I have to help others come to terms with my PD.  To me, telling family and friends about my diagnosis of PD has been the most difficult thing of all.  I was emotional and nervous at first knowing that the news would be a shock to them.  I find that most people know little about PD and you have to explain it.  I tell them “it is what Michael J. Fox and Mohammad Ali have”.  Their attitudes vary from genuine concern and support, to not knowing what to say and coming out with something like, “Oh, well, the treatments are very good these days,” and not really wanting to talk about it.  After my immediate family knew about it, it became easier for me to let a select few friends know.  Each person I tell, hearing my diagnosis of PD, for the first time is clearly quite difficult for some.  I find myself feeling sorry for them having to deal with the news and end up being supportive towards them when perhaps it ought to be the other way around.

5.   Some people never ask how I am.  Some do take the trouble to inquire, but I get the feeling that only some really want the true answer.  Perhaps those who don’t ask look at me and make their own assessment.  Some avoid  the subject finding it difficult to deal with the problems I’m encountering, maybe not knowing what to say.  Some ask my sister when they find it difficult to ask me.

6.   Unemployed.  In April 2008 I was fired from my job of 18 years, in one telephone conversation, by the owner of the company.  She told me some clients said that I did not look “happy” and the tone in my voice was not “friendly”.  She suggested that I look for another type of work that I truly would like.  This was a shock to me.  I asked her if I could take some time off because I felt it might be the tress of the soft economy that I was feeling.  She said no.  At this time I had no idea that I might be ill and my employer did not know either.  I went from being praised for years as a top sales producer and being told I was like “family”, to getting kicked to the curb in one unexpected telephone conversation.  What is upsetting to me is that she did not stand by me or try to provide guidance to meet the client’s needs.  This was a wakeup call for me leading me into an immediate depression.   At least it made me seek medical help which lead me down the road to my diagnosis of PD.

7.   Pride can get in the way.  Help is available but having been a self sufficient single working female possessing a certain pride in self reliance, requesting help can be difficult.  Family and friends are encouraging me to ask for help with some of the things I used to do but are now much more difficult.  For now I will still try to manage, but eventually there will be a time I will need help with daily living activities.

8.   Will receiving help knock my confidence?  When the time comes that I need help, will it make me feel less able?  Will it affect my confidence?  Will this change my attitude as someone who strives to achieve things, to someone who doesn’t push themselves at all?  These are thoughts I wrestle with.

9.   The one upside to having PD.  For me it is that I have met and made friends with a group of people whom I would have never met otherwise, and who have helped me see the way forward.  I hope I have helped a little as well.  It is the blitz mentality.  I suppose, comrades in adversity.  It makes the whole experience somewhat bearable to see others who are more seriously affected than me, continuing to live their lives and not feel sorry for them, and fighting their illness with dignity and inner strength.

10.  I know I am not alone.  There are doctors, nurses, therapists, researchers, my support group “Parkinson’s Resource Organization”, friends and family members all available to help.  And there are other people, just like me who are facing the challenge of PD, not by chance, but because the lottery that selected me, also came up with their number.  Somehow I think if we all put our heads together we can make the journey we face easier to cope with and we might have some fun along the way.


Resistance to Change

There is usually one black sheep in any family. Black sheep insist on doing things differently. Their family believes their way is weird, unsafe, unsound and just plain stupid.

I am the black sheep of my family. I am always trying out new therapies of one type or another. My current goal is to reverse the color of my graying hair back to black.

New therapies are continuously being introduced. It is likely that some of them will help. I figure, why not give them a try? They are natural, noninvasive and safe to try. What is there to lose? I have only one life to live and it does not last forever.

Reactions I get are blank stares and questions.

Is there any research to indicate this will help?

Why do you want to pursue a therapy that your doctor
does not even know about?

In short, there is usually significant criticism from family members if the black sheep of the family decides to branch out and try out treatments or therapies other than prescription drugs and/or surgeries.

Are you the black sheep of your family? If so, I need to clue you in to the reactions you can expect from your family when you announce you are pursuing therapies that re not familiar to medical doctors or approved by the FDA.

So you are going to try tai chi? Isn’t that a weird
eastern thing?

You want to eat differently? What is this? You don’t like
my cooking?

You really shouldn’t exercise. You may hurt yourself.

Sound familiar?

From my extensive interviews with persons who have the symptoms of Parkinson’s, a family drama often unfolds when the black sheep announces they are branching out of the family mold and trying other things.

Why do family members get so upset with the black sheep of the family in such cases, especially when the treatments they have been trying are not working? My answer to this puzzle is that you are challenging their limiting beliefs about illness and recovery.

Family members may very well have bothersome symptoms of their own.  They hopefully have taken the smart step by seeking the advice from the specialty of western medicine. If  they are not considering other specialties that have the potential to provide relief however, they have given up their power of control over their own destiny. They have resigned themselves to being told what to do.

It is frighting for anyone to acknowledge they have given up the power of choice, especially when it comes to their own health and well being. Learning that someone else in the family
is stepping up to the plate and taking responsibility for their own health elicits deep questions about the decisions they have made regarding their own health care.  It is tough for all of us to face the truth of our actions. Denial runs deep in everyone.

Of course people in your family will react strongly if a black sheep of the family branches out of the grip of mainstream medical care and begins to take control over their own health.  This act in itself raises questions about the power of choice everyone else has given up with regard to their own health care. No one likes to confront the reality they have given up all power of choice to someone else.

Incidentally, the color is my hear is turning back to black from gray. I am doing it naturally – no dyes involved. Isn’t that cool? I suppose I could turn it back to black with hair dyes, but then I would be giving myself an overdose of toxins.

© 2009 Parkinsons Recovery