He also has multiple sclerosis, something he was diagnosed with four years ago at the age of 50, just after he married Alison Jacobson. It has impacted his daily ability to do everything, and rapidly. Recently, he took a realistic look at his situation and recognized that a mobility van–one equipped to accommodate his wheelchair and his own lack of mobility–would make a world of difference. But such a vehicle would be exorbitantly expensive. That’s where the wider community, Wilton and beyond, stepped in to help.
We asked Greg to share the story of how he was able to get his much needed van, something he took possession of only one week ago. He also unexpectedly was able to obtain a motorized wheelchair. In such a short time, both have already made a huge difference in his life. We could tell you about it, but his words are the most powerful to explain just how much his life has been impacted by his new set of wheels, so we asked him to tell GMW.com readers himself.
My symptoms began in 2008. I went to my doctor and said, ‘Something’s wrong.’ I was extremely tired for no apparent reason. And I had a little bit of dropfoot–only a hint. My Lyme test came back almost positive, a false positive probably. I was seeing Lyme specialists, no one said it could be neurological. I didn’t know any better.
A golf friend thought maybe it was vascular and suggested I see a vascular surgeon. The vascular doctor ran a test and said, ‘Your circulation is perfect. But I think you’ve got something neurological going on.’ He gave me the number of a neurologist. That was 2010. I met with that neurologist and after he did all this observational testing over a number of appointments, I sat down with him.
‘What do you think you have?’ he asked.
I said, ‘I think I have MS.’
He said, ‘That’s what you have. What do you think about that?’
I left that appointment and got in the car, got on the phone with Alison, and I was a wreck. A wreck. As I was going through all of the tests and evaluations, my condition was getting worse. It was a relief to get a final diagnosis but it was hard to look at my future.
This is a long process and it’s expensive. I have primary progressive MS. As my neurologist says, ‘You got the bad one.’ We have nothing to treat you, your future is going to be challenging, prepare yourself and your family. I know what I’m having every day I wake up–it’s not different, just different degrees of disability.
It’s the weakness that’s the most challenging and troubling. I don’t suffer from the fatigue that most MS sufferers have where it just stops them dead in their tracks. I occasionally get it but not a regularly basis. I’m trying to make plans for what’s coming at me.
Over the last two years, Greg’s abilities deteriorated rapidly, leaving him unable to walk much at all. As a result, he says, he left home less and less.
I know I was frustrated, but how much I missed! I couldn’t do anything spontaneously. I was no candidate to run out and get a gallon of milk. I was no candidate to do anything quickly. Everything required planning and foresight, and I knew whatever destination, if I had to get out of the vehicle, I’d have to assemble a 150-pound mobility scooter out of four very heavy pieces. As I became weaker and weaker, it became more and more risky for me to do that.
It was parking, getting to the door behind me to get my walker, to get to the back of the minivan, then I started pulling the pieces out and putting it together. That’s a 10-minute process right there. Of course getting back in would involve the same difficult process, just in reverse.
It came to the point where I just said, I don’t want to do that. If somebody asked me to do something, I was like, ‘No! I can’t! I want to, I’d love to, but I can’t.’
Unless Alison or the kids were around, I’d stay home. I was a shut-in.
Back in April or May, I said, ‘I can’t live like this. I’m of no use to my family.’ It became even difficult for me to get into a vehicle to begin with. Climbing into a vehicle with only your arm strength is no way to start any kind of journey, even if it’s a quick pick up or drop off at school. I can’t only do things where I’m only the designated driver.
I’ve got three step kids and two kids of my own who live in 20 minutes away in Ridgefield. They’re all active, and I want to participate in everything everyone does. I missed a lot, because I couldn’t do it, or I chose not to do it. I know it was upsetting to people in my family when I’d say, ‘I’m sorry, I can’t do that.’
It’s amazing how much mobility everybody needs. You want to do something, it takes mobility to get somewhere. Mobility provides relevancy. I was afraid I’d become simply irrelevant. With my new mobility, it’s first and foremost critical to me and my family. If I’m no use to my family, that’s irrelevancy. But secondarily, it’s the only way I can continue to raise money to fight the disease for everyone with MS. I have four fundraisers a year. I want this disease to go away for everybody. I want to be out there making it happen, that something is discovered that will make a difference in all these lives–not just the patients but the families. This is a disease that affects the entire family. I always refer to families with MS, because they’re all living with it.
Before I had to stop working I had a company called Accessible Home Living–we remodeled homes for accessibility. How ironic is that? One of our biggest clients had a mobility van that he purchased from Bussani Mobility in Mamaroneck, NY. We worked on his home for a year, so I saw his van all the time, and I was always impressed with it. In the back of my mind I always thought, ‘If it keeps going the way I think it’s going to go, Bussani are the people I’m going to call.’
I became very surprised at the cost of these things. [New, that’s more than $60,000] That van cost $39,000. That’s when I said, ‘I can’t afford to do this. But I need to do this.’ That’s when I went about raising money from my friends. I raised $29,000 from 204 friends via GoFundMe.com.
We ended up with the set-up now, where I drive in with the chair and get locked right in place behind the steering wheel. It’s the coolest technology there is. I worked with them for two months between raising the money and narrowing down the right van. My salesman from Bussani, Jordan Lechter, he’s a great guy. He identified a van with 35,000 miles on it.
This chair is a $25,000 chair. Another company was trying to get me a new one, covered under Medicare. With my insurance it would have still cost me $5,000 as my co-pay and that was too much. Jordan knew it was interrelated. He identified this chair, sitting in another client’s garage, barely used, and…was able to get it into my possession for $1,000.
They started marrying the chair to the van–it’s custom fit to that vehicle, in relation to me in the seat behind the wheel. It’s amazing how much this stuff needs to… we did it the right way for ease of use as well as for safety. It’s been remarkably easy.
Having these mobility devices, like this chair and the vehicle is probably 9-12 months late, but I’m grateful that I’ve got them now. Because as my symptoms progress, as it is right now, I can do a transfer from this seat to that seat, that’s all I’ve got. I want to maintain that as long as possible.
I’ve been fundraising to fight MS for now three years. As my symptoms have increased, I’ve had to do fundraising for myself. I’m not wealthy. I have a very big network of good solid friends. My college classmates and teammates; my high school classmates and teammates. I went to Milton Academy on scholarship to play hockey–we’re there for each other, for any of our classmates. The same goes for my Williams College classmates. I played four years of hockey and four years of golf. Those communities get behind the golf fundraisers, they’ve always stepped up. Over the past three years I’ve probably raised over $75,000 for the National MS Society.
But I knew this would be a big thing. I originally set out to raise $60,000 because that’s what a new one of these cost. I always said a gently used one would be just fine. But this one is better than gently used–it’s beautiful. It’s the most gorgeous vehicle…
Greg begins to cry.
204 people. 204 people, made that a reality. And I am beyond grateful.
I’ve always had great faith in humanity, but I have even more now. It’s people that I know and that I don’t know. A large number of the 204 I don’t know. I know them now.
He regains his composure.
Even just the good thought matters. Those good thoughts will resonate and those ripples become waves, and you never know what comes of the good waves. Even the smallest donation of help matters. I appreciate every single gift, it’s simply that–a gift.
There are hundreds of thousands of conditions out there–some life threatening, some just life altering like MS. The families never correctly anticipate what it’s going to take. I found out the hard way. I could not survive without the assistance of the community. For each individual with any of these conditions, it’s bigger than they anticipate. It’s going to take much more than they plan for. I’m on a chemotherapy medication that costs $75,000. Thank goodness the pharmaceutical company provides financial assistance. If you’re not wealthy, who do you turn to?
I never imagined that I was going to be turning to all of these communities that meant so much to me for so many years, and without hesitation, they all stepped up.
There’s still a $10,000 loan. I have to carry it, I can’t afford it. But I don’t see any other way. I’m on disability as it is. I’m grateful it exists, but it’s only a stipend. At this point, I’m not in that mode anymore–it’s one of these things that if that financial burden can be lifted, great. If it doesn’t get lifted, I can live with that too. But I achieved my goal of having that van and this chair in my life. It’s giving me life. Mobility is life.
I took it for granted. We all take it for granted. You don’t realize what a gift it is to stand up, and move from this spot to that spot. And into a vehicle to move to another spot 300 miles away. The god-given gifts that you have to do that can get lifted and taken away. Make the most of what you’ve got left, and that’s my intention–to make the most of what I’ve got. For me that means ending MS.
I am beyond joy. This is truly life changing. Yes, my life changed in a very dramatic way with this illness, but this has changed it back. It’s amazing to me, having lived with this disease, and lived with the constant declining capability, it’s amazing how much my world shrank. It wasn’t until I took delivery of this on Friday that my world opened up again.
The first thing I said was, ‘Alison, give me a honey-do list. I will go do everything and anything you want me to do. I want to do everything that I was not able to do prior to this. That’s all. So I spent this past weekend, going, from the time I woke up–just give me the list.
Greg Jacobson’s fundraising effort is ongoing. Anyone wishing to contribute can visit his gofundme.com webpage.