Some Silver Clouds are Aluminum
Patti and Marty Shenkman
How Our AS Journey Began
My wife, Patti, was diagnosed in 2006 with Multiple Sclerosis (MS). It was an “incidental” finding. As if anything that significant can be “incidental!” Every health issue is a life changer, but not always negative and never how you expect. My wife wrote in an article more than a year ago that “It took a while before I was able to see the silver lining in the black cloud that had entered my life.” Little did either of us imagine at the time that the “silver” might actually be “aluminum!”
The public needs to be aware of and educated about the invisible disabilities that exist, and both of us are trying to do this. To accomplish this goal Patti has bravely been very open about talking about her disease and its impact on her life. We hope to use our Airstream to expand the reach of this message that is so important. The message is so vital because nearly 120 million Americans are living with some type of chronic illness. 22% of Americans are living with two or more chronic illnesses. Because the symptoms are often invisible, and because they not only vary dramatically for each disease, but even people with the same disease can have very different experiences, it is difficult for most people to understand what is involved.
Traveling Is Difficult
Traveling with MS has become so burdensome that it’s often not worth the difficulties involved. Patti requires a special diet which is tough to maintain, and in airports nearly impossible! We have to carry needles for her daily injections of Copaxone, and we’ve had far too many struggles with airport security over needles, food, ice blocks and more. They’re just doing their job, and most are quite polite, but it’s a challenge. A major and common consequence of MS is a terrible neurologic fatigue. It makes traveling very difficult, and organized tours with strict time tables a torture.
Yet, MS is a very enigmatic disease. “To look at me, no one would know that I am living with MS. But, no one knows how I feel, and believe me; I feel the symptoms of my disease. It has had a huge impact on my ability to get things done on any given day because of the neurologic fatigue I experience.” The National MS Society has even published a booklet entitled: “But You Look So Good” addressing this issue. For many people living with MS and other chronic illnesses the symptoms of the disease are largely invisible to outsiders.
RV to the Rescue
A few months ago, after our last effort at a two day vacation and the attendant difficulties with food, organized tours infringing on fatigue time, and more, “RV” popped into my head. Patti laughed! But if Patti is fatigued, we can pull over at the next rest stop and she can take a nap. If we can’t find appropriate food, no problem, we can jump into our trailer and make whatever she needs. No worry keeping medications refrigerated if we’re towing our fridge… An RV just seems to solve it all. But we’re perhaps the least likely candidates to ever buy an RV. Our collective RV experience until a few months ago consisted of having seen Robin William’s movie, RV! The first time we even saw an RV was in the showroom
Charity and Awareness
Traveling the country in an Airstream, visiting old friends, seeing the country, and more sounds great, but not enough. We believe something more substantive and meaningful can be woven into our new Airstream adventure.
After Patti’s diagnosis I combed the professional literature, and found little to nothing on the subject of estate and financial planning for people living with MS or other chronic illnesses. I wrote about estate, financial and related planning for people living with Alzheimer’s disease, ALS, Parkinson’s disease, MS, Crohn’s disease and other chronic diseases. These articles lead to a book Estate Planning for People with A Chronic Condition or Disability, which was just nominated for the 2009 Forward Magazine Book of the Year award.
A few years ago I wrote a book for the National Multiple Sclerosis Society on charitable giving, called Funding the Cure. The book helps those living with MS, or who have a loved one living with MS plan donations that can help the National MS Society and the person living with MS. Someone can donate and help fund the cure for MS all while helping their loved one with MS. About 4 months ago a new version of the book was published for the Michael J. Fox Foundation for Parkinson’s Research targeted for those living with Parkinson’s. In fact, this book was dedicated to my brother in law who is sadly and slowly losing his battle to Parkinson’s.
All the proceeds from each of the three books are donated to charity.
The Road Show
We’re now heading off on a new venture that we hope will build awareness and raise funds to find a cure for MS, Parkinson’s and perhaps other diseases. We’ll be traveling to different parts of the country (Patti, our dog Elvis, and me). Each area we go to I will be presenting lectures for the National MS Society and the Fox Foundation local chapters. These might include:
- Lectures for accountants, attorneys and financial planners on charitable giving or estate planning for chronic illness.
- Presentations for those living with MS, Parkinson’s and other diseases on special estate planning steps they can take.
- Discussions with planned giving boards and fund raisers at the various chapters.
- Meeting with prospective donors.
Much of my volunteer work has been focused on helping the charities do more sophisticated charitable planning to raise money – trusts, complex tax techniques, etc.
Educating professionals and local chapter boards will hopefully help these great charities raise more money for their worthwhile causes and help those living with these difficult diseases through more research and programs. Since we’ll be on the road and plan to hit different areas each trip This will hopefully be come a charitable giving road show.
Hopefully we can create a buzz of awareness about the National Multiple Sclerosis Society and Michael J. Fox Foundation for Parkinson’s Research, and other chronic illness charities, raise more money for MS research and other charities serving people living with chronic illness, and help fund a cure!
Workers on Wheels
Our plan is to spend a week a month on the road in a few months. I’ll be working from the road via the internet so I’ll be dealing with some of the issues that affect your readers as well.
RV4Thecause
A website, www.rv4thecause.org, to facilitate all of this is in process. It will include all the materials from sample letters, press releases, power points and outlines the charities can use to organize these programs. The goal is to make it as easy as possible for local chapters of the National MS Society and Team Fox groups, to facilitate the programs. The name comes from the title of the Funding the Cure books done for the National MS Society and the Fox Foundation (MJFF). Hopefully, this series will be expanded to help other charities serving those living with other chronic illness.
Conclusion
While “aluminitis” probably won’t directly cure MS it might help us raise the money to do just that! Educating professionals around the country on charitable giving techniques will help them to help important charities raise more money to fund the cure. Guiding people all across the country who are living with chronic illnesses to better plan for their futures will bring more certainty to counter the uncertainty of a chronic disease.