Poppy is seven years post diagnosis now, and his Parkinson’s didn’t start drastically affecting him until he was at the 6 year mark. He had his first PD Specialist appointment last week.
My best advice (aside from joining a support group) — see a Parkisnon’s Specialist right after diagnosis!
We endured years of Poppy seeing an apathetic neurologist who just wrote prescriptions because “they’re drugs used to treat PD” and really didn’t care when there were extreme side effects… he would shrug and suggest we start looking at DBS. Unfortunately, this is what so many people with PD endure until they get desperate.
Don’t let yourself get desperate — see that specialist NOW! Because a few years down the line, when PD is severely affecting your quality of life, you might not be up to traveling the 3+ hours it takes to get to the nearest specialist.
Even though PD is a widely known disease, few neurologists know how to adequately treat it. Most people live hours away from the nearest PD Specialist. Dr. Dorsey at Johns Hopkins has done a wonderful job with his telemedicine trials, but it wasn’t enough for us. After Poppy increased to a full tablet of Sinemet, even just once a day with the extra carbidopa, he got sick all over again. We already had the appointment at Stanford to see a specialist, because we knew that we most likely would have to adjust his other meds once he got going on the Sinemet. After three hours of enduring road construction & traffic, we spent another three hours in our appointment — them analyzing Poppy’s condition and then coming up with an action plan. We knew it would most likely zap all our energy, so we had planned on staying the night in Menlo Park — which is NOT cheap unless you’re fine with a 20 year old lumpy mattress. All of that isn’t easy for someone with Stage 3 PD.
If you see the specialist early on, you have more options in the long term — less stress too! You also have a better understanding of the disease, since it really is more than just tremors (which Poppy actually doesn’t have.) You also have the added benefit of being able to continue receiving treatment from the PD Specialist without having to travel — at Stanford, the PD Specialists prefer to work with your neurologist at home instead of making you travel every six months. We’re already working on getting Poppy into a new local neurologist, one who actually is considering making PD her speciality.
Even after the doctor and her PA came up with the new action plan for Poppy’s treatment – I don’t think he really felt the trip was worth it, even though he was already feeling better. Well, that was until the next morning when we went to Stacks for breakfast.
Poppy got to meet one of his favorite football players — Jim Plunkett. Poppy was grinning the whole way home after that!
Jim Plunkett aside, the trip really was worth it. All of our questions were answered, and for the first time in seven years — someone is treating Poppy’s PD adequately.
How do you find a PD Specialist/Movement Disorder Specialist? That’s a little tricky — because you want to select one that will stick around and not move on to another big hospital. It’s best to ask around at your support group to get a feel for things, but then do your own research online. We’ve had many members of our group lose their specialists because the specialist moved on to another facility. So, I suggest taking a look at what PD things are going on at the major teaching hospitals in your state. Our options were UCLA, UCSF, and Stanford. The UC’s are big into research studies and trials, where as Stanford does do studies — but the doctors aren’t as pressured to commit most of their time to research. There was also the APDA Center at Stanford — and our support group leadership has worked with their coordinator a lot over the years. Also — talk to your doctor who has been the most help for you in your PD journey. For us, it was Poppy’s pulmonary specialist. Completely random — but he’s a total PD genius. He is also a UCSF doctor, and even he admitted — UCSF is more research focused than patient focused. So, we were sold on Stanford. If none of those work, get connected with your nearest APDA Center — I believe most are like the ones at Stanford and help PD patients connect with specialists.