TODAY

 Today is a big day for me Not necessarily in terms of good news but not bad news, I hope. Every six months or so, I go to a place which specializes in issues such as Parkinson's or ALS or any kind of neurodegenerative disease and I get evaluated by people who no connection to me. Therefore, I am hoping that they will be objective and truthful as to where I stand in the five levels of PD.

  Why do I do this when I have at least 4 to 6 active hours a week of PT, boxing, walking, any kind of exercise which demands movement, challenge and courage, so certainly I should have a sense of where I am on he PD Scale. I do, and so do my therapists and boxing coaches, etc. However, when you see someone twice a week, week after week after week a relationship develops and when people get along with each other, it's not so easy sometimes to impart to them statements which are not necessarily encouraging.

 On the previous visit, I was sure that I was at a 4 1/2 out of five, definitely not good news at all. I thought my therapist were not passing on a correct evaluation because they didn't want to hurt me, as they actually liked me as much as I liked them - a great deal. However, when they finished the evaluation at the Institute I was told I basically had remained the same. I had maintained at a two and a half and the biggest problem was what is called retrograde propulsion, which is an involuntary movement of taking steps to the rear. In other words, walking backwards, which is not a good thing to do because it's not exactly contributory to maintaining one's balance and not ending up on the floor. That is a major no-no.

 So here I am today after a 4 hour drive up and two overnights, another 4-hour drive home, waiting to get evaluated in speech, occupational therapy, physical therapy, posture, balance, agility, speed of movement, pace and distance of walking, mood and cognition, and outlook on life. My main concern, I believe, is my balance and some involuntary movement. But I don't believe it is too bad, and I am hopeful of not really crashing past a 3 if I have to leave my preferred home of two and a half.

 What I especially like about the Institute is that there is no sense of mourning here that one has been caught, captured by PD, trashing a life and all good things in life are now unreachable. That is a terrible attitude and the Institute along with any good therapist will join you and fight just as fiercely with and for their clients to have an optimistic viewpoint in life. Positive outlooks can be fulfilling and contributing in and of themselves.  In addition, seeing a place like this wholly dedicated to this sector of diseases which afflict people is encouraging. They are up to date, are extremely helpful in suggestions and ideas, and I know because I practice quite a few of them which they have given me during my visits.

 Over the years since my diagnosis, going through at least 4 movement specialists who left for research positions, and numerous other critical health personnel, I have found that there is one aspect of life thing that is the most debilitating of all. FEAR. It is overwhelming when asked to do something which you have not done before, or at least not for quite some time. Or caused you to fall the last time you tried it. Not remaining erect but taking a big whopper down to the floor. This FEAR is the greatest enemy of mine and others and has been most difficult for me to overcome. However, enthusiastic backers encourage one to overcome that feeling, or at least set it aside or tamp it down to just as long that you need in order to be able to do that with you have been asked to do thus allowing you to move forward in another session. And to take pride in yourself as well.

 What has been most encouraging and strengthening is the social interaction that occurs in the clinics. It is not only physical exercise there, but rather, it is also the repartee back and forth between the therapists and the clients and the relationship which develops amongst them. Within those clinics there is no pity. There is no serious whining and for the most part, smiles and laughter and encouragement of each other are plentiful, generously dispensed. A warm feeling of love and concern permeated the air.

 So no, I am not recommending that one go out and figure out a way how to achieve that wonderful status of P. D. Or some other neurodegenerative disease. I am saying this is not the end of the world. No, one does not go tiptoeing through the tulips with Tiny Tim upon diagnosis. In fact, one most probably breaks down and cries as I did. However, I have had wonderful health personnel along the way, who have gotten me over any of the humps and hurdles that I have faced so far. They laugh and struggle along with me, encourage appreciate and push me to continue new activities undertaken over the course of this PD. Painting. Woodworking. I Skills in these areas growing and challenging.   

 The key here is to keep busy, to keep active physically and mentally. Read books, fiction and non-fiction, whatever appeals to you. Take on some physical activities new to you. Watch some TV that makes you think or laugh but is not inane.  Be a volunteer. Join clubs. But do not stay locked in one's home, doing absolutely nothing or feeling sorry for oneself.  

 Indulge yourself. Have a milk shake. Go see two movies a week if you enjoy it. We do. Rediscover the music of your youth and sing and dance along with it in your home. No one is watching. And if they are watching, tell them to join in. Discover a love of walking along  a beach or other forms of art and music. Whatever works for you short of criminal activities - LOL. Don't worry about what you look like or how beginning level your skills are. 

 There is one last thing one must understand. Sometimes because of the stiffness of the muscles, or severe back pain, or weaker legs, and the fear that you have sometimes of the difficult activities that you are asked to do, one begins to restrict the walking, one of the best activities for PD.  Don't fall prey to false, stupid pride, as most of us do or did, for it is both foolish and restrictive of what is best for you. Use that cane. Use the walker. I know I am much more confident if I have a cane when walking outside, and a walker if there is any kind of distance to cover. It enlarges one's world.      

 Life continues. For the most part it is good. What is going to come we hope will be in the far future and will hopefully not come in its full power. In the meanwhile, we have places to go, things to do and people to see. Annoy your children - payback for raising them. I especially enjoy talking with my grown-up grandchildren and find especially most delightful, my great grandchildren, the dividends from the dividends.   

 So, if you are newly diagnosed with some neurodegenerative disease, like Parkinson's, the one I know, yes, you are allowed to cry. Yes, you are allowed to have moments of wondering what the hell! But for the most part you can continue on with good friends and healthy lives and activities and be the person that you were before, even better for the new experiences and lessons that you are learning and undergoing.

 Positive attitudes even with the sprinkling of some negativity at times. Normal is the best way to make one's way through life.

So it was yesterday

So it is today.

And with the help of G-d,

So it will be tomorrow.