Hi Fed, I found this blog I wrote several years ago and thought I'd share it with you.
Living with a chronic progressive illness certainly has a profound impact on one’s life and creates a lot of grief in response to the losses it imposes on our lives. There's a large variety of potential life interruptions and psychological changes one will go through when dealing with accepting Parkinson's. We learn quickly that Parkinson's is erratic and unpredictable and our days require constant readjusting. We are likely to endure multiple losses that may include the loss of control and personal power, which is an important contributor to self-esteem, as well as loss of independence, loss of identity, loss of financial status and loss of one’s customary lifestyle. These are all issues most of have to deal with and are often experienced years before diagnoses that can inflict much stress and anxiety on oneself and those around you.
In addition, we may also have to face the possible relinquishing of our hopes and dreams and face the prognosis of more ongoing losses. Changing roles in family and social situations that result from a person’s illness also can create additional adjustment problems for everyone involved. Sometimes when you are the one who has Parkinson's, you fail to notice family members and partners are likely to be experiencing the same feelings as you are as well as their own feelings as to how the illness is influencing their life. If these feelings of resentment aren't worked out, then relationships may fall apart and leave us with another loss. You fear being a burden on others, you feel very insecure, less confident and resentful of others, often bringing to surface the famous words WHY ME, WHY US?! We feel we need more reassurance, lots of hugs and kisses and closeness. However, at the same time, this disease can make you feel less desired and we can shy away from the love making for this reason.
Perhaps the most difficult transition with Parkinson's is the loss of the identity one held before becoming sick, followed by a complete restructuring of the way one defines oneself, and the way one interacts with the world. Sometimes it is difficult to feel good about oneself -- Parkinson’s incorporates into a new self-image. The work of rebuilding one’s life and identity can be further complicated by the loss of closeness with partners or other supportive relationships that sometimes follow the onset of serious illness and can often lead to more resentment and the feeling of being isolated and often alone even though we have people around us.
Moreover, as all persons who suffer with Parkinson's, many of the symptoms being invisible, know the lack of validation and support for our illness, which can create further grief and frustration. At a time when we most need compassion, love, understanding, sympathy, and support --- criticism, disbelief, and anger, confronts us!
It is no wonder that many people facing these multiple losses and the grief that naturally ensues find themselves experiencing high levels of anger, fear, helplessness, hopelessness, resentment, depression and damaged self-esteem. Coping with all these issues can be very overwhelming.
I found the following coping strategies help me:-
Allow yourself to feel and express your feelings.
Allow yourself to grieve for what you have lost.
Find support such as a support group (such as this forum), friends, counsellor, etc.
Recognize the limits Parkinson's demands in your life and set reasonable goals. Be realistic about what to expect from you.
Learn to adapt, make substitutions and modifications so that you can still participate in fulfilling life activities. Do something fun!
Delegate with the family so you don't have to try and do everything causing burnout--Keep communication open with partners, friends and family members so that feelings and resentments don’t build up and so everyone’s needs can be addressed and met in the best way possible.
Learn to value your own company, become your own best friend, and find yourself worth based on inner strengths rather than on what you do.
Take care of your body by following a healthy diet, mild exercise, and appropriate rest. Listen to your body. It will tell you what it needs. Pamper and nurture yourself with things that are enjoyable for you. MAKE THE TIME! YOU DESERVE IT!
Educate yourself as much as possible about Parkinson's and treatment. This will help regain a sense of control. Involve your partner in your appointments and don't be afraid to voice your opinions.
Let go of expectations of others and society. Understand that society’s definition of what's normal no longer applies. Do what you need to do for yourself and don't feel guilty.
Make peace with Parkinson's. Try to think of the illness as your companion instead of your enemy. Listen to the wisdom and lessons it may carry for you. Learn to flow with and accept Parkinson's rather than resisting it. I've learned a lot since my diagnosis and if anything I feel a better person. When I first read Michael J 'Lucky Man,' I thought how you could be lucky to have Parkinson’s. Now I understand what is meant by those words--he believes Parkinson's has opened many doors and allowed him to meet many people and encouraged him to be more in touch with his soul.
We need to adjust our mind to think its ok if you can’t do something the “normal” way but you can find another way to do it that fits your needs. Making modifications, adapting, substituting, changing time, location, and intensity of companionate activities, can all help to maintain an active life style. An example of this might be you're unable to attend an outing with your child so you find another alternative activity of having quality time such as a dinner at home and doing in fun activities. We have a Nintendo wii and have Nintendo wii nights. Carefully ration your energy. Prioritize and make lists of what’s important and what must be done and what can be put off for later.
Living with Parkinson's is not easy. It is a lifelong process that will require ongoing adjustment and readjustment of every day and each situation. Understand and accept that it is the nature of your illness to be unpredictable, intrusive, interfering, and erratic. Expect the unexpected and make adjustments accordingly. As you are sure to go through periods when symptoms exacerbate and periods of improvement, it is natural to move back and forth in your level of acceptance and adjustment. Understand that acceptance and adjustment occur in ebbs and flows.
Depression and anxiety are so mind and life controlling and play a major role in Parkinson's. I've had counselling and also a course of cognitive behaviour therapy and found it helped me to accept Parkinson's and not see it as my enemy. Mind you, I still have my 'WHY ME, WHY US' days and have just had a top up appointment with a psychologist. It helps to keep me sane and it is very important to talk about the way you are feeling. Don't bottle it up! Communication is a vital part of living and coping with Parkinson's in our lives!
Have you accepted Parkinson's in your life? Are you in control or is Parkinson's?