MY CURRENT NEED - A MOBILITY VAN:
With these things that are hapening, and my new power wheelchair coming the time has come to where I need to acquire a mobility van so that I can stay in my wheelchair and drive the wheelchair into the van and be able to go to my doctors appointments, family gatherings for the holidays, and hopefully be able to get back to church more often. Additionally, I am in the process of getting a speech communication device which will require classes across town at The University of Central Florida (UCF) at least once a week. Therefore, having the ability to stay seated in a power wheelchair and go to these classes will make my life much easier.
The cost of these mobility vans is very expensive, to the tune of $25,000 - $30,000, or possibly as much as $40,000 - for a nice quality used van that will be reliable enough for us to travel back and forth from Orlando to Tampa where my Multidisciplinary ALS clinic is located. Unfortunately, Medicare doesn't help cover the cost of any portion of this mobility van, even though they help pay for my power wheelchair.
This is where I need your help!
If you can find it within your hearts to make a donation, and possibly pass this around to others who can help with my cause I will be forever thankful and greatful, more than words can say.
I am looking to hopefully purchase this van within the next 3-4 weeks, possibly sooner depending upon what becomes available. As my custom power wheelchair will be here by then, and my next doctors appointment at the ALS Multidisciplinary Clinic in Tampa is scheduled for sometime in July currently.
THE ROAD TO DIAGNOSIS:
Since the spring of 2013, I have been struggling with the effects and the path that lead to the diagnosis to my disease Amyotrophic Lateral Sclerosis (ALS). It all started out in May / June of 2013 when my speech started slurring some during certain words or conversations and personally I didn't think anything of this at the time. It wasn't until several months had passed that my family members started calling my son - John to ask if everything was okay as during certain telephone calls my speech was starting to sound like I had had a few too many adult beverages, or that I had taken some medication that was causing a problem with my speech.
As 2013 progressed my primary care phycician finally convinced me to go into the hospital to get some testing done and to find out what was going on. Unfortunately, despite a full work-up at the hospital over a three to four day stay I had to be referred to "The Movement Disorders Clinic" at Shands Hospital in Gainesville, Florida. It was here where the Neurologist reviewed my hospital tests, and performed an EMG test where I had numerous needles stuck in my nerves and muscles to test their response. The response was that I had brisk muscle movement, which was almost certian a diagnosis of ALS. However, we did one last test to confirm, which was - a full back MRI to make sure that I didn't have some other disease that was hiding. Unfortunately, there wasn't anything else found so between December 2013 and January 2014 I was officially diagnosed with ALS - with Bulbar Onset (which is the type of ALS that affects speech first instead of muscles that affect strength for movent and walking). As 2014 progressed I lived a pretty normal life until December of 2014 when I started falling more and ended up in the hospital over Christmas requiring surgery on my left wrist and forearm. This lead to me having to stop working and becoming homebound with this disease.
WHAT'S NEXT ?
As you may know ALS is a disease which currently has no cure or any way to stop or slow the progression of the disease. The only thing that my team of doctors can do for me is to treat my symptoms, and try to keep me healthy and comfortable for as long as possible. As this disease progresses my body will become paralyzed and I will lose the ability to walk. With my speech already being the first thing that has been compromised, I will ultimately lose the ability to speak and swallow food safely, and when this disease reaches my lungs and diaphram, my body will require machines to help me breathe or I will die.
Currently, my walking ability has gotten worse where I can no longer get up out of a chair on my own, or walk independently with my walker. I require assistance for these basic tasks, along with dressing and being able to use the bathroom. I am fortunate that I have been able to stay in my own home as my son John as stopped working to become my fulltime caregiver and help me with these things as well as in preparing my meals and taking care of almost anything that I may need.
THE FUTURE AND MY DREAMS ALONG WITH HOPE:
Things with my health are staying relatively stable over the majority of time at the moment and fortunately this horrible disease of ALS isn't progressing that rapidly at the moment within my body. I am fortunate that my son, John, has become my voice and advocate to help me acquire things that otherwise I would be at the mercy of those agencies and things in life that just look out for themselves. With my son's help and advocacy I have been able to maintain my home healthcare which I feel is vital for my continued health.
Planning for the future right now with the needs I will be facing is very difficult with living on a fixed income of Social Security and very little other retirement income to support myself, my needs and to take care of my son John who is my caregiver. Fortunately, with the assistance of the ALS Association and the Multidisciplinary Clinic we attend I have been able to acquire many things that I needed and I have been able to start the process of getting the other things I will need in the future as things progress.
This leads to the present day, with my current situation and needs. Currently, I have been approved for a new custom power wheelchair which I will soon need as my walking and balance deteriorates to a point where it will become more difficult for me to walk safely. In addition it is becoming more difficult for me to get out and go to the doctor or holiday family gatherings in my manual wheelchair and the vehicles we currently have.
- Joanne Gillespie
- Simon & Carol Saunders
- Joanne Gillespie
- Joanne Gillespie
- Abraham Roiss
Organizer and beneficiary
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