What is change?
Well, if your ask our good friend Google it will tell you:
· (Noun) the act or instance of making or becoming different.
"the change from a nomadic to an agricultural society"
Change Is when our normal becomes different.
I receive services from a Center of Excellence where changes of the new diagnostic criteria are hopefully being reviewed. I went for one of my follow up appointments on May 4, 2022. Travelling to the appointment, I was already anxious because I've been noticing different and more significant changes to my symptoms for the first time. Typically, appointments are a quick in and out with really no changes so, I didn’t know what to anticipate – therefore, the anxiety worsened.
During this visit we discussed my concerns. I walked around so they could check my stability and we then worked on a plan of action because the doctor agreed some things were new and/or progressing. As we were ending our visit, the doctor told and my husband that they will no longer be seeing HD patients; in a few months a new doctor will call to schedule an appointment with me from that office.
As you can imagine, I shut down to everything else they said after that. I was already crying because of my progression and now my husband join me in tears. We had built a relationship with this doctor for several years.
Now what do we do?
Well, that’s just it --- what do we do?
After a day or two of being on an emotional rollercoaster I was able to think clearly and come to terms with what was happening. Not that I had much of a choice.
We all know structure and stability in our lives are so important in our day-to-day living. When one, or many things cause waves in this process, we tend to get overwhelmed, shut down, anxious, depressed, and some may even have suicidal ideations.
It is quite probable that many of my HD Warriors have experienced what I went through. I feel your pain. As an advocate, I am here to help you and your family get through this process. I wish to share information pertaining to doctors and contacts in your area. Or, if you need emotional support, I am here. You are not alone!
For me, still being in the start of my research have already found many ways for us to look for a new doctor or get help through this difficult time.
Here are some options:
There are other doctors in the Centers of Excellence that you can seer (for me this is a difficult choice simply because I live far away from mine).
Utilize the HDSA webpage and search by zip code for local Center of Excellence & neurologist.
Utilize the HDSA website to contact the social worker in your area so they can assist with the leg work of locating a doctor with HD experience.
Utilize the HDSA website to use TELEHEALTH for a social worker or psychologists.
If anyone needs assistance and help to gather information, please email me directly. We will work together until everything is taken care of!
Stay strong warriors and always have HOPE!