Sunday, July 7, 2013

Evolution in Accessible Vehicles

For the past 3 years my husband and I have been using my Toyota Matrix to get around town, and the country for that matter. He transfers out of his chair into the passenger seat and I fold down the seat and cram (literally) his chair into the hatch, then off we go! We make it work but it's not ideal, and over time, especially with his disability progressing this repeated procedure is taking a toll on all of us (including my car). Living in FL presents added problems. Seeing as the exterior of my car is a blazing 1,000 degrees on a normal day my husband's poor hand gets burned (or close to it) trying to transfer. We attempted several adaptions here, a rubber jar opener to protect his hand, an ove'glove and then finally and most effectively- a leather wheelchair glove. My girlfriend once got in the passenger seat and asked "Did you give MJ a ride home, because I think he  forgot his glove"? Funny. Long story short it's time to save ourselves and upgrade our vehicle!

I don't know about you, but I just can't bring myself to drive a mini-van! Thus, we took a trip over to the dealership and checked out two vehicles, the VPG MV-1 and a converted Honda Element. The Honda Element looks great and they did a nice job with the conversion. However, we were really surprised how cozy (small) it actually seemed on the interior.  Once up the ramp Nygel had to wiggle around a bit to get his chair far enough to the left to allow room for the ramp to come up. It wasn't too bad, and probably just required some practice to make it smoother. Once situated, the tie downs were simple and this was already a big improvement over our usual routine!  Getting out was much easier, it's definitely a contender. 

Next we checked out the VPG MV-1 and wow that really blew us away. The body structure on the MV-1 reminds me of a larger version of the black cabs in England. The really fantastic thing about this vehicle is that it was designed top to bottom specifically for wheelchair passengers, and they really thought of everything. There is a short and long ramp that extended by button, lights on the door eliminate any blind-spots when using the ramp at night. The air suspension and great visibility provided a very smooth ride. This big boy has a V8 engine and really cruised even though it's a heavy vehicle (the Element had an almost identical weight but only a 4.6 cylinder engine). On the interior there was enough room for Nygel to do a full 360 in his chair which made moving around and getting into position incredibly easy. This is the dream vehicle.

The dealer gave us some great info on funding that I want to pass along to my fellow Floridians:
  • FAAST-Florida Alliance for Assistive Services and Technology is a lending source that provides loans ranging from 3,000$ to 30,000+ to disabled FL residents in need of assistive equipment! This great program only works with disabled individuals (and their family members) to grant loans for everything related to adaptive equipment ranging from vehicles,  to home renovations, and medical equipment. 
  • Additionally, we learned that if you get a prescription stating that it is medically necessary for you to have a wheelchair accessible vehicle you don't have to pay sales tax on the purchase up to $200,000.00! Score.
Both these awesome vehicles come with a hefty price tag of 35+ (used) and we are pinching pennies left and right to save up. Additionally, we also started a page on go fund me to raise money. We have some great friends, and I always say "you can bank on the kindness of strangers" and its gotten us through many hiccups away from home. Check it out, and you can even help the cause if you want!

Sunday, November 13, 2011

Rick Hansen's Global Accessiblitiy Map-- Dreams do come true!!

I recently received a comment from a fellow caregiver blogger, Patrick, who shared with me an AMMAZZZZING site, AKA:     Rick Hansen's Global Accessibility Map. I have to say i am off the charts with excitement over this one (in case you couldn't tell!!). 

Rick has magically interfaced with Google Maps so that you can find AND review places in your area, or read reviews for an area you will be traveling to, regarding how accessible they are. Hello!? Awesome!! This is really fantastic, and if it takes off what an amazing resource it would be.  Check it out, and write some reviews about places you go and have been so we can all enjoy a more accessible world! 
Thank you Rick Hansen, and Patrick too. 

Friday, November 4, 2011

November- National Family Caregivers Month

Rosalyn Carter said it best: “There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers”.

On November 01, 2011 Barack Obama declared the month of November the National Family Caregivers Month and sent a press release acknowledging the care and support provided by unpaid family and friends.

The National Family Caregivers Association (NFCA) provides a wealth of information and support services to family caregivers. While many family caregivers go unsupported or unrecognized for that matter, the care they give is staggering when actually acknowledged.

The following stats were taken from the NFCA website:

  • ·         40% to 70% of family caregivers have clinically significant symptoms of depression with approximately a quarter to half of these caregivers meet the diagnostic criteria for major depression. Zarit, S. (2006). Assessment of Family Caregivers: A Research Perspective
  • ·         More than 1 in 10 (11%) of family caregivers report that caregiving has caused their physical health to deteriorate. How Do Family Caregivers Fare? A Closer Look at their Experiences. Center on Aging Society. 2005.
  • 78% of adults living in the community and in need of long-term care depend on family and friends as their only source of help. Thompson, L. Long-term care: support for family caregivers. 2004 
  • The value of the services family caregivers provide for "free," when caring for older adults, is estimated to be $375 billion a year. That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).  Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving;
    National Alliance for Caregiving and Evercare. March 2009  

 If you are a caregiver, do something wonderful for yourself this month. Don't forget the importance of self care and of making yourself a priority. If you know a care giver or have been the lucky recipient of care from another, take the time to share your appreciation with them.

Monday, October 31, 2011

Key West- Weddings to Go

Nygel and i got married June 11, 2011 in Key West (yay us!) and it was the best week of my life. A huge part of why it was so great was thanks in large part to Ray and Eileen at Weddings to Go Key West. Ray and Eileen offer wedding package deals and take care of as little or much as you need. No they are not paying me to write this, in fact they don't even know (but i probably will send a link in self serving hope that they will post it on their page and publicize my page!!). What made Ray and Eileen so great though was how they worked with us. Typically they perform weddings on the beach (it's free) but as you may have imagined Nygel can't get out on the beach in his wheelchair. I had only been to Key West once before our wedding and was only there for 3 days on that first trip so i really knew nothing about the area (yet decided to plan a wedding there?). When we realized the beach was not an option and couldn't find anywhere else,  i called Ray and asked for help. Ray brainstormed all kinds of ideas with me. He carefully listened to Nygel's physical abilities and limitations and then came up with several options that we could explore and he felt would fit our needs and also make for the intimate setting we wanted. Ultimately we settled on the Key West Garden Club (which is fully wheelchair accessible and ammmmmazing). Ray and Eileen were available instantly for every question and emotional flare up that took place. Eileen made a personalized ceremony and they both were patient and professional throughout. Ray's photography was beautiful and he was great to work with. I want to promote  Weddings to Go Key West because of the impeccable service they provided us and also because of the way that they took our special needs in stride. If you are planning a wedding or vow renewal consider Key West and then call Weddings to Go Key West.                                                          

In the beginning...

People always ask me if i knew Nygel was disabled when we met, which i find to be a curious question. I guess that people are trying to figure out if he got in some horrible accident or massive disease progression and i just stuck it out with him because i already loved him, or if i actually thought 'yeah sure i'll go on a date with the dude in the wheelchair'. The answer is yes i did know, if you were wondering, and the whole experience of being in a relationship with someone with physical limitations has really been a mind-soul-heart expanding experience. I'm no saint though, truth be told i tried to break it off with Nygel. After a few really great dates the reality of life (and that fact that i was developing feelings) hit me and suddenly the prospect of dealing with my own health issues and his physical limitations became so overwhelming that the sheer thought of doing his laundry put me over the limit and sent me freaking out that it would never work! Thankfully, Nygel is the equivalent of a high stakes hostage negotiator who helped me remember to breathe and to agree to at least give it a chance. 

Almost 2 years later we are married and i know i am the luckiest girl around. It's still interesting though to see how people respond to our situation. On Halloween someone referred to Nygel as my brother, 'or my husband' i corrected him as he stared at me drunk or confused-- i'm really not sure. A boss of mine said "ohhhhhh that's so nice you like help him and take care of him and stuff" (maybe she was confused and thought i was his nurse not his girlfriend?). And my personal faviorte is a girlfriend who's only question was "does his dick work?", 'yes', "oh ok, well that's cool then, as long as you're happy". Thankfully, not everyone is a moron and some people can see past the wheel chair to the person and the realtionship. I hope that this site will serve as a way for me to meet more open minded and open hearted people and to keep on getting out and about to experience all that we can.

We love to travel and it's shocking how limited (or useless) the information is out there for travelers or people just living life with disability. One site had an accessibility rating for locations, great! Except it was either "cripple friendly" or "not cripple friendly". Really??? One thing that we definitely want to use some of this space for is to share information about places we go and the accessibility of them. Maybe it will help someone, maybe it will just be a great way to jog our memories the next time we go (i think i have early onset Alzheimer's!!), ultimately it will just be fun to share all these memories.

Realistically, I'm not sure what the purpose of this space is but i guess i just want a place where i can express my self as an able bodied spouse. Ultimately, of course i hope it will connect myself with other people and allow us to share experiences, information, and some of the great and not so great stuff that comes with living in a world full of stairs and stares, if you know what i mean.