PMDS (Parkinson’s movement disorder syndrome )affects our physical, psychological, emotional and social abilities and it requires a holistic approach for the patient to lead an almost normal life. Doctors deal with the physical and to some extent psychological aspects of PMDS but the emotional and social issues have to be tackled by the patients, care givers and family and friends.
Following are ten rules that will help PMDS patients tackle emotional and social issues and improve quality of their lives.
1. Be positive
The most important rule is to be positive and look at things in an objective manner.
I feel that PMDS is one of the most maligned ailments. In comparison with other ailments, in PMDS there are no long periods of hospitalization, no expensive tests, no essential surgeries, no transplants, no painful radioactive / chemical therapies, etc. Yet its mention evokes strong negative reactions from most people which are mostly based on worst cases. This is due to wrong notions about its impact on the patient’s life span and the quality of life after the onset of PMDS. If PMDS patients collect and analyze data objectively, they will be able to convince themselves that these notions are not true. And PMDS is not a monster that it is made out to be.
The positive attitude is a result of objective analysis of the situation based on correct data. The positive attitude will help in creating a healthy environment for the patient to tackle problems.
2. Do not let the symptoms overwhelm you.
I show many of the symptoms attributed to PMDS, such as tremors, rigidity, postures, etc. etc. The medicines help in reducing the symptoms and it is better to leave the symptoms to the doctors. I look at how they affect my daily activities and try to find out ways to reduce the impact of the symptoms.
For example, tremors may make eating with spoon difficult. Focus on alternate ways of eating such as with fork or fingers. Soup can be drunk from a cup
Tremors may make it difficult to put on clothes. There was a period when I frequently required help in buttoning my trousers or wearing a T-shirt, I started wearing track pants with elastic waist. Wearing loose T-shirts eliminated problems with the T-shirts.
Another problem with tremors is difficulty in repeating your signature. Your signature may be different every time you sign. This can be addressed by authorizing some one else to sign.
If you freeze in the middle of an activity, try out doing the activity in a different way. Quite often, I get stuck while wearing shoes. It is like the brain not being able to find the next instruction in the program for putting on shoes. The more I try, the longer I remain stuck. I go back a few steps or to the beginning and start wearing shoe again hoping that the program is found this time. If you normally wear the left shoe first, wearing the right shoe first may unfreeze you.
Even such small things make one feel creative and lead to a positive attitude.
3. Know PMDS.
I found myself very much at peace with PMDS after my knowledge of PMDS increased. In the initial years when my knowledge level was low, I was confused. I did not know how it would progress, what are the side effects, what different treatments are available, etc. I was fortunate to make a trip to USA where I joined a support group. There was a lot of reading material available which explained things in a simple language. In addition I could interact with patients, doctors and care givers. This led to higher knowledge level and helped in lowering the anxiety.
4. Healthy Mind in a Healthy Body
One must keep oneself physically and mentally fit. Neglecting either of them will result in deteriorating the other. Many activities such as Yoga, Physical Exercises, Bharat Natyam, Kathak, Art Based Therapies with Music, drums, painting etc. are available for groups and individuals. Some of them will focus on physical fitness while others can achieve both. It does not matter what you do as long as it meets the objective of maintaining Healthy Mind in Healthy Body and you enjoy it. Mental fitness can also be maintained through crosswords, Sudoku, Bridge etc.
5. Continue to do things that you enjoyed.
May be at a slower pace but do it. It may be a game such as Tennis or Badminton or a hobby like gardening or photography. One will have to take the necessary precautions against falling or cutting.
Make sure that you do not miss any of the family functions such as marriages, birthdays, etc.. That will give you a feeling of being in the main stream of life. Many patients isolate themselves from family and friends. This leads to a depression.
6. Play Truant
The routine of taking all those pills 4-5 times a day, seven days a week and 52 weeks a year, can wear you down. So let free the school boy within you and play truant, skip a pill of Syndopa. It will give you a sense of adventure. Do it in a safe environment. So if you feel that things are going out of hand, you can go back to the pill. Note down the effect of missing a pill, and experience the feeling. It will come in handy when you accidentally forget to take a dose. And you will not be finicky in such a situation.
If you enjoy the experience, in consultation with your doctor, you may want to try out a longer drug holiday.
7. Spend time with your grandchildren.
I am fortunate to have my grandchildren live in the close vicinity of us. So we end up doing baby sitting for them almost everyday. Let me tell you frankly, no other therapy can beat this. The amount of energy they bring in the house is tremendous. When they are around, there is hardly a dull moment. I do not know where I would have been, if our daughter and son in law had not returned from USA about 3 years ago and decided to settle down close to us.
8. Share experiences.
As someone has said, we must learn from other people’s mistakes, because life is too short to make all mistakes by ourselves. Same is true about experiences. The Mitramandal provides a good platform for sharing experiences with other patients, care givers and doctors.
It also provides a safe environment for experimenting with new ideas.
9. Ask for help.
People are more than willing to help. Many people will come forward to help you if you have a difficulty in doing something. They will help you cross the road, put on your clothes, eat / drink, carry bags.
All you have to do is ask.
10. Hold on to your sense of humor.
Laugh and the world laughs with you. Cry and you cry alone. Sense of humor is the ability to laugh and make others laugh in a time of adversity. It can help one improve one’s social health.
Try and find something that will create a laughter in every situation. Keep a smile on your face.
In conclusion, PMDS patients can improve the quality of their life through attitude, knowledge and behavior.
Loved your positive approach.