KQ Fund for MS Support & Housing
November 15, 2012
Dear Friends,
I need your help! I am launching a fundraising effort to help costs for accessible housing and for care services to sustain my wellness due to recent debilitating Multiple Sclerosis (MS) symptoms. Some have already contributed and my goal is to raise $60,000 by June 2013. I hope you and your networks can help me get there!
Many of you know that I have recently struggled to find a suitable living situation that can adapt to my physical disabilities as a result of the progressive MS. Recently, my sister Anne proposed a solution to me for caring for my long term needs, and guaranteeing a housing option that will serve me physically and emotionally. It will require a build-out of their house in Lockport, NY "“ my home town, and at this point a good choice. I will be closer to more family and old friends. However, the likely cost of improving their home to accommodate my physical needs will be in the range of $30K-$60K. Given planning and construction time, this most likely will not be completed until summer 2013!
I wish to reach out to my many contacts in San Francisco, Washington, D.C., Lockport, and elsewhere - including my large, extended family - to ask for your support with this project. Without a dedicated housing option for my increasing needs, or a stable base for my continued
wellness, the alternatives are scary and at best under-equipped for my continued and future care. This page on GoFundMe.com hosts a secure Paypal link for contributions and provides more details about my condition. I hope to raise enough money to support the build-out and to secure a stable place for myself for future care. You can also read more about my backstory below, as I detail my current circumstances living with progressive MS.
My project goals are general now, but I want to give regular updates on my progress:
1. Start my campaign by November 15, 2012 to support the Lockport build-out.
2. Hire/secure a contractor by January 31, 2013 to undertake construction.
3. Break ground on the build-out in Lockport by April 30, 2013.
4. Complete the build-out by June 30, 2013.
5. Move to Lockport by July 31, 2013 and establish ongoing health care.
I would like to thank you for any contribution you can make, or simply by your support with Facebook, email, and mail messages and continued outreach. My current contact information is:
8051 E. Tempest Ridge Way, Parker, CO 80134; Phone: [phone redacted].
I appreciate your friendship. In this time of need, I thought appealing to my large network would be best, if only to communicate the reality of progressive MS and what it means to live with it. Please share with your friends, as you feel comfortable doing. Your moral and/or financial support toward my goal is much appreciated! Thanks.
Love,
Kathleen
MY STORY:
As many of you know, I was diagnosed with progressive Multiple Sclerosis in 2000. After the initial shock of a life changing diagnosis, I educated myself on holistically managing symptoms as they appeared, initially in the form of balance issues, lower body stiffness and walking challenges. I continued to work full-time, travel, and drive a stick-shift car in San Francisco. I still exercised; albeit slower. I was lucky enough to work around the Bay area, survive commutes, take public transportation and generally live my life. I used a cane for stability, however, MS continued to slow me down.
In 2008, I decided to take a job back in D.C. to explore a new career path and to be nearer to my closest sister and her family. Once in D.C., my MS progressed further and caused greater mobility challenges; walking was becoming harder. I had to move twice in two years to transition into housing that could accommodate mobility devices, a challenge to find in any city.
In 2010, I stopped driving and had to transition from using a walker to a scooter to aid mobility. I continued to work full time by using accessible transportation services to/from my job in D.C
The M.S. showed continued progression when my right side stopped working in June 2011. It was becoming increasingly challenging to use my dominant arm, sustain energy and to travel. My employer and I separated in August 2011 as a result of this increased disability. I then applied for and was declared officially disabled and am now eligible to receive SSDI benefits
(Social Security Disability Income) as a result of my working history. By December 2011 I hired home health aides to help me with household tasks, cooking, physical transfers and help with personal care needs. Unfortunately, health insurance offers limited to no coverage for these services so day-to-day support can max out ones disposable income very quickly.
I decided to move to Denver in June 2012 to benefit from the less humid western air and to take advantage of the proximity to the Rocky Mountain MS Center, one of the best in the country for MS research and services. Also, the move would offer me a chance to be near to two other family members (Joanne & Rob).
Due to increasing symptoms this past June, independent apartment living did not work so well when I moved to Denver. I had to then move to an assisted living residence in August 2012 where they provide 24 hour care (mainly for elders), since living on my own was becoming unsafe. FYI, there are only 3 places in the country that offer specialized care for those under 55.
Unfortunately, I was not eligible to move to one residence more in line with my age group (in Denver) for needing too much care. Living in a senior community was very hard, and not sustainable for many reasons. On October 27th I moved again to a small residential group home located in Parker, CO. This location offers more personalized service, an independent living space, and a caring team of aides. I hope to maintain my wellness during the months of preparation needed to relocate to Lockport.
I've always tried to live on my own; in fact, it is very important to me. I am luckier than most; I currently receive modest SSDI and LTD (long term disability) benefits; have a loving and supportive family; awesome friends; my mental faculties, and some funds to sustain me for now.
However, the reality of progressive MS has now greatly impacted my independence
and daily life. MS has taken away my ability to walk, lift or turn my body,
care for my personal hygiene, sustain energy, and use my right arm and leg. I
now type with my left index finger (always wanted to be left-handed but didn't figure
it would be this way). Basically, it is the worst it has ever been, but with my
luck I will be on this earth a good long time!!
It's more than challenging to find and financially sustain supportive services, including housing and care options. The costs of these services currently outweigh my benefits. To receive public benefits like Medicaid for care support, I must deplete my savings. I will be out of funds in about a year while spending down my retirement savings to supplement my income for care costs. Once that occurs, the Medicaid option may be available for medical needs, however the resident care facilities that accept Medicaid are quite depressing, and they mostly accept those over age 55. I knew this intellectually, but now I know it for real. For all of these reasons, my sister's proposal to build a space for me in their home is currently the best option for my long term care and support.
Thank you for reading my story, and for your consideration to donate to my project. I am happy to answer any questions you might have about MS or my new reality.
Love,
Kathleen
