New Neurologist Visit

Well our biggest "news" from the last post is that Jim finally had his appointment with the new neurologist. Dr. Lerner is from University Hospitals and he "gets" FTD - I am so excited. While at the FTD conference someone asked me why we needed 2 neurologists and I didn't have a good answer - I just said "I feel like we need one for each condition." Now, after this visit I don't know if my answer can be worded any better but I know I was right.

I feel that we have one of the best (if not THE best ALS specialist) in Dr. Pioro at Cleveland Clinic. Now I feel the same about Dr. Lerner and FTD. Again, he gets it. Anyone who has dealt with an FTD patient understands that statement, those were my exact words after my first FTD support group too. I think in order to fully understand FTD you have to "just get it" and not ask why or want answers you may never find.

Anyhow, back to Dr. Lerner. He is super nice. He actually spoke to Jim and not "around" him. He answered all our questions and actually explained Jim's disease to him. (Not sure how much he got - but it still was great.) At one point he told Jim not to think of him as the doctor but to think of him as part of the team. Dr. Lerner has agreed to order a PET scan for Jim and is working on getting insurance approval for it. After discussing it with me and Aunt Mary (who also came to the appointment) we agreed we wanted the test. During the conference there was a lot of talk about PET findings in FTD patients. Dr. Lerner explained to us the results will most likely not change any course of action. However, seeing as how all of his previous imaging studies were negative I think we would like to pursue this exam. If for nothing else just piece of mind. Don't get me wrong - not that I want to find anything and there is little doubt in my mind that this is what is wrong with Jim since he fits the profile to a "T" - but there is always that question in the back of my mind. AND I would like to see if there is a change from the imaging results last year. I will keep everyone posted. We follow up with Dr. Lerner at the end of November.

One positive thing that came from the visit is that Jim is now on a medication for the FTD. It is actually an alzheimer's medication that is being tested on FTD patients. There is real proof it will do anything but our hope is it will slow the dementia process. Dr. Lerner said there is another medication that will be released for FTD trial in the spring. The medication may not make a difference - but it is something we are trying.

Jim also had some more testing during the visit. He has been through all of it before. A good deal of it he had just taken at the last ALS visit. Probably the most curious result was when the had Jim count back from 100 by 7s. Last month his first and only answer was 97. This time around his answer was "67, 57, 47, 37, 27" - not really sure what it means if anything. I guess we will find out at the follow-up visit.

Another piece of good news - Jim received a TENs unit for pain management. We are trying it to help to relieve the side pain he is having. This is his biggest complaint of all of this. Who knows - maybe it will actually help kill some of the pain and cut back on the medication.

Also new this last week - Jim has told me that he is no longer able to swallow his large "horse pill." Yes it has me worried - but he does not seem to have any other swallowing issues at this time. So for now I am just cutting that pill in 2. I recounted his pills this week - with some changes in meds he is up (or down) to 21 pills a day (counting the horse pill as one) plus one supplement powder and any pain meds he takes each day (which can be up to 8 pills but usually doesn't go over 4.)

OK - Enough of the medical talk. ----

Last weekend Jim and Mikayla took an over night trip to Buffalo and slept on a real battleship. It was some great daddy daughter time. They actually slept in the ship's bunks and got to explore the ship and a submarine. While on the trip they also stopped off at Niagara Falls and rode the Maid of the Mist and visited an Aquarium. They had a great time. I am very thankful to the other Medina Guides and Princess fathers for making this trip possible for them. These men pick Jim and Mikayla up, drive them and bring them home. Plus they help Jim out with everything and help keep an eye on him and Mikayla. This is the same group they went camping with this summer.

I also want to thank my friend Lani for helping to watch Mikayla on her crazy schedule so that we can balance child care and doctor's visits. Some of my new friends are so great!! Not sure what I would do without them!

Well.... until next time..... Take Care!!