Thank you to all for the text messages/calls/email support over the past few days. We made it to Mayo in Rochester, MN one step at a time and accomplished a good amount. It was a constant battle from the moment we got in the car but with patience and perseverance we survived.
Sunday – Nick, Mom and I drove to Rochester so we could try and get sleep before appointments on Monday.
Monday – Mom’s cousin Linda met us to help support the group – so thankful for her laughter and love. Let’s just say Mayo is quite the place/universe of its own. Beautiful, massive, and overwhelming all together. We were prepared with snacks, games, pictures, etc
1. We met Dr. Golden, a Neurology fellowship Doctor, who asked both Mom and I a series of questions around onset, symptoms, behaviors etc. Then proceeded to quiz Mom and get a better understanding. Most questions Mom didn’t want to answer but she finally came around and had some witty responses.
For example, Doctor: Please repeat after me: “No ifs, ands or buts”
Mom: repeats it
Doctor: Please repeat: “Please sit down”
Mom: I am sitting down! with a smirk on her face
Another one… Doctor: Who is the President today?
Mom: Mr Obama rolling her eyes dramatically
And… Doctor: What’s the difference between a dog and horse?
Mom: I hate dogs. Ashley don’t get a dog. Animal lover she is!
Dr. Golden also looked at Mom’s vitals, her reflexes, strength, and muscle twitches.
2. Then we met Dr. Drubach the main Neurologist with a specialty in FTD. We spent a few minutes with him and he confirmed that after reviewing previous medical records, everything indicates FTD. He did however express interest in exploring more of Mom’s nervous system and muscle reactions. He ordered numerous tests to follow and wants to review next week. He will be referring us to a psychiatrist closer to Hudson to help with ongoing care/management of the behavioral/emotional/psychosis issues.
3. A series of tests…
-bloodwork to rule out anything unusual
-PET scan to look at the metabolism of the brain and show functional imaging which can help pinpoint where the brain is affected by the mutated proteins causing deterioration
-MRI to rule out tumors – however there was no chance Mom would take this test – later the Doctor said the PET helped rule this out
Tuesday – after a good night’s rest we were ready to go again! What I learned most was to be an advocate for her. As much as they put you into the soonest available appointment, waiting on standby was worth it and then constantly checking to see if we could move up/around appointments to condense them. If not tests would have been done over 9 days non-consecutively. I felt like I won when we got it down to 4 days I actually did a happy dance in the clinic.
1. 1. Met with Dr. Duffy – a Neuro Speech Pathologist. He had conversation with Mom and then brought us all in. His insight was the most useful thus far. He ruled out the subtype of FTD called PPA (Primary Progressive Aphasia) which has to do with language. Her slurred speech and incomplete sentences is likely attributed to what he thinks is mis-coordination in the cerebellum area, weakness of the facial/jaw muscles and fatigue. He, like the other Doctors, want to run a swallow examination. This is common in FTD and most dementias – a weakness in muscles that help with swallowing and then speech. There is no treatment for her speech but he helped with communication tips.
-face to face communication is best
-get rid of distractions – tv, radio, music off
-state important things when she is less fatigued and only 1 thing in a conversation
-if you don’t understand her words, say “I didn’t get that, please repeat”
2. 2. Then we waited and waited. They had more tests scheduled their soonest available – next week. So we went on standby. Finally in late afternoon she got a EMG test. This pokes small needles into various muscles, shocks them and monitors the reaction. What we gather they are looking for is issues with her nerves. She is far more weak, unbalanced, and uncoordinated than ever before.
3. 3. After this we went home to Hudson. 2 days was enough.
Next – There are a few more tests ordered to make sure we aren’t missing anything. Then a follow up with Dr. Drubach and his recommendations. Also education about participating in genetic studies to help with research in FTD. Thursday, Dec 19th at 10am is a Swallow Evaluation and X-Ray and in the afternoon a Consult. Then Friday, Dec 20th at 7:45 am a Psychiatry visit and in the afternoon a meeting with Dr. Drubach with a wrap of the diagnosis and careplan.
Overall my end game is my feeling of knowing I brought her to the best of the best Doctors and developing a Doctor network to help with caring for the symptoms of the disease. I’m thankful for the opportunity we have in our healthcare system.
Thank you again to Nick and Linda – for waiting for hours, keep us all entertained and sane, listening to Robin repeat herself, and for the supportive words!
