 |
 |
Occasionally, we cross paths with an individual who is strong even in adversity, is steady and unwavering in their mission to become greater than their peers expect. Margaret Tuchman and myself reminisced a few days ago, with tears in our eyes, a dear friend we had the honor to call our friend, Alan Bonander. Alan, was an innovator, we all were curious and information about our condition was sparse and incomplete. PIEN was created by Barbara Patterson to help bridge that gap. Alan was a regular contributor. The following is one of Alan's posts to another YOPWP. >Subject: David Boots > >TO: David > >I needed that. There is nothing like a sobering minute. I give a lot of >credit to those who do not have a care partner. Doing everything yourself >and not having someone there when needed, both physically and emotionally >is difficult. There has always been a need for strong support of our single >members in the PD community. > >As to the incident on the front porch, don't think of it as peeing on >oneself, think of it as "Whissing on the World". I don't know anyone with >PD or a carepartner who didn't at some point want to "Whiss on the World". > >There are three centers in the US that I can recall performing fetal tissue >transplants. They are U. of Colorado (Dr. Curt Freed), Good Samaritan >Hospital (Dr. Jacqus) and somewhere in MA where they are doing the pig >fetal tissue transplants. Outside of the US, there is Cuba, Sweden and China. > Obviously fetal tissue transplant, pallidotomy and medications will not >give you a new mid-brain. They can buy some time. > >I have this dream that something will happen by the end of this decade. Two >years ago, I had doubts anything could happen this soon. Today, the >scientific knowledge is growing exponentially. I have great hope now that >science will break the code by 2000. In the mean time decisions will need >to be made on how to buy time. > >One of the best ways to buy time is to be active. This means to get >exercise, get out in the public and be a part of life. Looking inward for >strength is like peeing on oneself. Looking outward and being a part of >life is like "Whissing on the World". It gives purpose to life. > >One of the problems of being 37 with a chronic illness is that all your >friends are building their lives, advancing careers, and the last thing >that is on their mind is the possibility of chronic illness. They are the >ones who will often say "When things get really tough, give me a call." They >have ecome "bad weather" friends. It is a sad observation on society. You >need to make new friends, which means becoming a part of different groups. >This is not easy and requires a lot of effort on your part. Everyone I >know who has done this, has found it very rewarding. > >Suggestions on where to look depends on your likes and dislikes. Music is >a wonderful part of your life. You may find playing in a blue grass band is >too taxing. How about using your music leading singing at support group >meetings? There are many places you can use this talent to make people >smile, clap their hands, stomp their feet and make their heart young. In >our phone call I asked you to start a support group for young people in Santa >Rosa. This you agreed to. > >It really pays once in a while to wear your heart on your sleeve. This >email support group really responded to your tears. There are people who >care about you, David. Thanks for crying out, for now the healing can >start. I really enjoyed our phone call. > >I have known David since about the day he was diagnosed with PD. David can >express emotion, something the males in this world need to learn. He has >fought ADA with his employer, be participated in the Washington Forum >recently on the Udall Bill. I think the assistant in Sen Feinstein's >office will never forget David. > >Hang in there David, we care and are there for you. Thanks for waking us >all up to the emotions of PD. I needed it and I am sure others did also. We >will keep in touch. > > >Regards, >Alan Bonander When Alan was taken from us Margaret and I discussed an award in remembrance of him as an inspiration, confidant, counselor. Margaret, the Parkinson Alliance created the Alan Bonander award to honor someone in our midst who exhibited the traits we loved and admired, the sense of helpfulness, humility, and steadiness even though the recipient had multiple health issues. This year's honoree is our own Murray Charters. John Cottingham ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn