The Road to Deciding to Get a Service Dog for My Multiple Sclerosis

Let me start by saying, as of the writing of this blog, I am not receiving any sort of compensation for my opinions so when you hear me talk about Freedom Service Dogs, it is because they are near and dear to my heart and I believe in what they do.

If this is the first post of mine you are reading, then hi and welcome. I have Multiple Sclerosis, it sucks, it sucks pretty hard some days to the extent that I would love it if it was a person I could kick in the teeth. My story of how I came to the decision to apply for a service dog was a very difficult one and I do not enjoy sharing it so hang in there.

Winter of 2015, one year after my official diagnosis, and a few months after I was violently rear-ended in a car accident that resulted in torn hip cartilage that required the use of a walker my husband and I took our kids to the local indoor mall to see Santa. As you can imagine, the mall was filled wall to wall with an insane amount of people and we were trying to leave through the crowd, I encouraged my husband to take the boys ahead of me because I was slow and he hates crowds as much as I do.

As I slowly made my way through the crowd I was shoved aside by two teenage girls trying to get through, mumble to myself something about hating crowds and teenagers are assholes. Fine, moving on, me with my bright blue walker with wheels, just trying to leave the mall. Grown ass man shoves me to the left trying to get through, first of all WTF, second of all, if I was an old lady would they be shoving me? I have never in my life felt so vulnerable than at this very moment, broken, small and in a crowd of people who didn’t give a shit about where I was in their space. At this point I am holding back the tears that are trying to well up in my eyes because I am not weak and I will not let these people break me, there’s a reason I don’t work in retail anymore. Barely holding my shit together but getting closer to being out of this disaster of an outing another set of teenage girls pushed me aside to get by.

Once I left the mall doors and was on my way to the car I started to cry (I could barely walk, I was using something meant for old ladies, I was only a year into a diagnosis that would eventually take everything from me and I just experienced the worst of humanity during the holiday season). This just would not work for me. I started to research after that, what it would take to get a service dog for my MS by the time I needed one. I also set my walker up with flashing bike lights, a warning horn and a cup holder because you had better believe I am not getting shoved around again.

In my research I found that most options for service dogs are buying a Lab type puppy specifically bred for the job and then paying $40,000 for training. Well, I don’t know about you, but I don’t have that kind of cash laying around to pay for a service dog, especially when meds for treatment for MS is already very expensive. Then I happened upon Freedom Service Dogs, I vaguely remembered them speaking at one of my DAR meetings when I first joined but at that time I was not yet diagnosed.

Freedom Service Dogs is a non-profit organization that provides fully, custom trained service dogs to people who need them. This includes mobility, veterans, PTSD, they have also partnered with Disco Dogs to provide service dogs to people with Autism at no charge to the client. They provide you with training with your dog and constant support should you want it. They will also help train your dog for things like if you have MS and go from needing Brace and Balance assistance to being in a wheelchair and needing your dog to support you with that.

Want to know more about my journey to getting my service dog? I will post another blog about the next steps next week.

Multiple Sclerosis. How far along and should you be asking?

I am the type of person who needs information. Apparently I am a type A personality and don’t do well without control. I have copies of all of my medical records for the last 11 years, including blood work, radiology reports and everything in between. I read all the information I can get my hands on because I am trying to know everything I can about MS since I cannot control what it is doing to my body.

The first Neurologist I had, and fired because she told me to “shut up” when I asked if it was possible I could be secondary progressive didn’t feel providing patients with information was important. She basically just gave me meds, told me to take them and drew blood. Even when I had new lesions while taking the “best drug on the market” she refused to take me off of it.

My current team is amazing, I have no bad things to say about them but they always dodge me when I ask about the possibility of being progressive. I never understood why no one wants to discuss this. That is, until I went to an MS Education Summit at the beginning of November. Towards the end you are able to submit questions, so I did, five actually, and they answered four. The main question was about how doctors can tell when a patient is SPMS instead of RRMS. The actual answer made me better understand the logic which is all I really look for in understanding this disease that impacts each person in a different way.

The Neurologist, who also teaches at the local university answered, they can only tell when a patient changes status by talking with the patient and listening to how the disease is changing. That was followed by, patients shouldn’t be too concerned about getting that diagnosis though because right now, in the United States, there is no approved treatment for SPMS. This means that once you get that status insurance is less likely to approve any treatments for slowing down the progression any further.

It is times like those when I realize how terrible our medical system currently is. Treating MS is expensive, why wouldn’t you want to treat all types so progression slows and people can work longer and be part of society.

Final thoughts? I am no longer feel like I need to ask about my “type” of MS. Also, I learned at the summit that after a patient dies they cannot tell the difference between SPMS and PPMS when looking at the brain. I found that very interesting.