Bob & Carol (bob@boston)
For us the beginning was 10th of July 2000. Jan wrote telling us, that we were her first contact outside of the U.S.A, and to tell us of Del's condition. We replied with words of sympathy and encouragement for her to join in the MGH PSP Forum, a site she'd discovered the previous night. At this point Jan's Mom had passed on (28th June) but Del was still with Jan. Sadly he passed over on 14th July 2000.
The loss of her Mom in her absence because of Del's acute condition at the same time, and then so soon after to lose Del was to become a source of profound and enduring grief for her. We tried our best to console her and she bravely carried on, continuing to correspond by e-mail and helping others in the PSP Forum where she was becoming very active. We have a total of 533 e-mails in Jan's file and I know she was as prolific in writing to others, so the possible sum total of all she has written boggles the mind..lol..
Since those days Jan spread her wings far and wide throughout the Forums touching many with her sympathetic posts, her calming influence and motherly wisdom, not just in the U.S.A but around this restless world of ours, she truly was an international ambassador of medical goodwill.. She collected together an informative set of papers and articles regarding PSP and sent these out to others in need, at the same time visiting Hospitals and Doctors in her vicinity to 'educate' them as to the devastating effects of little known PSP. She was a lady with a 'mission' and she enlightened and surprised many an ignorant medical worker as to the devastating but insidious effects of PSP.
She moved house to be nearer her much loved son, Christopher and Christine his wife and their children, she took her dogs that she adored, Beau and Ty with her, and crammed the furniture from a much larger house into a smaller more manageable home of her own.. We still have the photographs she took of the rooms crammed full of packing cases. What energy she had in those days, living alone, visiting medical centres, educating and caring for others, keeping two boisterous dogs fed and exercised, sharing at a very intense level in the Forums..writing e-mails. How much we all benefited from that energy too....
But during all this time Jan was harbouring a dark secret. Namely that she was enduring the presence of a 'lump' on her leg, it had developed before Del died but she did not seek attention as she didn't want to be distracted from her care of both her Mom and Del, afterwards I think she was too distraught at their loss to even think about it, then she decided that she couldn't afford the potential medical bills, (a sad indictment of the U.S's medical policies), so she decided to seek employment in the hope that eventually her employers medical insurance would cover the costs.
Jan didn't reveal to anyone that she had this lump until around mid June 2001 and she took employment a month or so later working with a Care Agency that damn near worked her to death...by now it was fairly common knowledge amongst those in the PSP Forum that Jan had a 'lump' on her leg and it had been there for some years. We all pleaded and pleaded with her to have it seen to, but no, she decided to wait the statutory six months so that she could qualify to use her employers insurance. That six months became 12 and when she finally did see a Doctor the news was so devastating that hardly anything could be done.
From this point on Jan's story is well documented and known to many, for by this time she had touched the hearts of many hundreds of people within AND without the Forums at MGH. To us Jan has been a revelation as to the goodness that can be harboured within another person if only you seek it, she never criticised those that caused commotion or upset, instead preferring to pour a soothing oil over the troubled water. That she has helped countless many through bad patches and worse, that she has calmed others enough for them to understand, that she has tenderly 'held' the hand of the very many that were soon to pass on and at the same time coped with her own grief and depression is a tribute in itself to a very remarkable lady. One many have called an Angel, although she always discouraged such a description, we all knew what we were in the presence of. Now Jan has gone on to be that Angel, re-united with Del and her Mom, our prayers are that God will grant her the grace of eternal peace with them all together. Our loss is Heavens gain.
To our 'virtual' Sister and the greatest friend we had, but to our own enduring sorrow never met, R.I.P,, dear angel, our prayers go with you......
Bob & Carol (bob@boston)



Ma6564
With her posts, phone calls, emails, and snail mail cards, Jan was always dishing out large portions of Love and Hope. As long as her memory and her good works are alive, Jan is alive in our lives. Her friends are all over the world, most of whom she never met. She helped one and all with no hesitation, and gave of herself endlessly. Despite her deep depression after the loss of her Mother and her husband, whose heaven dates were only a matter of weeks from each other, she never faltered. All the effort that she put forth in caring for them for six years, she turned into helping others care for their loved ones. She is the very first to greet me in the Caregiver's Forum at MGH two and a half years ago, when I was contemplating bringing Elizabeth home from a nursing home. Jan just took me under her wing and generously gave her advice and tips and love to me. She followed up with a lasting friendship that I will always remember and appreciate.
Jan never rested. When she wasn't working at caregiving for an agency, she was educating people, including professionals in the medical field, about PSP, the disease that struck down her husband, Del. She was driven in her effort to help other families and make their jobs and the lives of their disabled loved ones easier with her experience and advice. Jan always delivered it generously as a gift to them. She was the "Mom" of the PSP forum on MGH, and was there posting and mailing information to any and everyone who needed it.
For as long as anyone can remember, Jan never was involved in any conflicts that arose on the boards she frequented. She was always the one who was known to call for peace and reason. Jan spoke love, Jan spoke gentleness, Jan spoke kindness to one another.
Jan is rejoicing once again with her mom and Del. All three are whole again and free of pain and sorrow. She wrote once that she pictured her Mom and Del without illness and pain and knew that they were in a better place. She said she hoped she could someday come to terms with her loss. Well, now she is "Home" with them, and won't have to suffer or miss them any longer. And as we are supposed to do, she devoted her life to making this world a better place. Her influence, her love, her devotion is felt all around the world.
Jan is loved by one and all who have had the pleasure to "brush shoulders" with her. Some called her JanDel, some called her Jan, some called her "thereishope", but ALL call her Friend.