Catching Up Again!

Kim asked me this week why I hadn't written anything for a while.  It has been a busy few weeks, but the primary reason is that I have been waiting to get a copy of our Colorado Bucket List video from Chuck so that I can finish the vacation posts and pics and post the video here.

Still don't have a copy of the video that I can post here, but it is available to the public (I think) on Chuck's Facebook page at: https://www.facebook.com/video.php?v=10204489086408343&set=vb.1267866520&type=2&theater.  Some day I will be able to post it on my blog.

Before I catch you up on the last 3 busy weeks, let me tell you that yesterday and today were fantastic days!  Yesterday Kim and I celebrated our 27th anniversary after work with dinner at Carrabba's.  It was a very nice evening!  We were married on the patio at the Elk's Club in State College on a beautiful fall day surrounded by family and great friends, and man did we party!

Today was a beautiful fall day outside, and I got a lot done.  Fall has always been my favorite time of the year. 

Three boxes of financial papers that have been lurking around the house for several years went to the Goodwill Community Shred day.  I took another load of stuff from the basement to the Salvation Army.  This afternoon I worked outside trimming bushes and cleaning up around the house and put the patio chairs in the basement.  Not quite done outside but great progress!

The weather was amazing for the end of October - in the 70's!  It was a joy to be outside and felt good to make the yard and house look better.  I had great energy all afternoon, but am tired tonight - a good tired! :)  Tonight, Kim made a wonderful salad to go with our Carrabba's leftovers (salmon, scallops, and garlic mashed for me) for dinner.  I've been having difficulty eating salads due to weak jaw muscles and swallowing/choking issues, but Kim bought a chopped salad kit, and now she can grind mine up into small enough pieces for me to be able to eat it.

Now to catch you up. 

About Me

My speech continues to go south, but I talked to Wendy from Schanzenbach and Nancy from OVR two weeks ago and they indicated they had recommended a MS Surface Pro with text/pic to speech software to enable me to continue working and be able to communicate verbally.  Not sure when it will happen or how much we will have to pay, but it makes me feel better knowing that we are making progress.

I continue to go to acupuncture Monday, Wednesday, and Fridays at lunchtime and continue taking the Chinese herbs that Doctor Williams grows and processes for me each week.  It is sometimes painful, and some days I wish I didn't have to go back to work, but I always do.  I must be getting used to the taste and smell of the herbs as I don't think of it as trying to eat vomit anymore.  The last batch was processed very fine, so she asked me to stop chopping it up in my NutriBullet and just mix it with OJ.  The current batch is a little more coarse, so swallowing chunks is a little harder, but getting through it.  She increased from 1 heaping tablespoon twice a day to 2 heaping tablespoons twice a day last week and increased it to 2.5 on Friday.  She indicated my tongue wasn't spasming as much, which she thinks is progress.  It was spasming pretty severely the previous week.

I joined the ALS Inspire website about a month ago and started talking to other PALS recently diagnosed with Bulbar in the past 6 months, and made a good connection in Pittsburgh and another one in the UK.  Both were recently diagnosed, one younger then me and one older.  The website has a lot of excellent information and I learned a lot from talking to my PALS friends and finally got up to speed with the Deanna Protocol (DP).  I ordered a 30-day supply of DP supplements and started on them this week.  Also ordered some Rich Life X Lunasin pills, which my friend in Pittsburgh indicated really helped him regain almost normal speech and swallowing.  He takes 10 pills a day in addition to all of the DP supplements.

I have modified my diet and am avoiding gluten, have increased my fat intake, as well as trying to work coconut oil into my daily nutritional intake.  The coconut oil is very hard on the stomach, at least it is for me at the start.  In addition to ingesting it, you are also supposed to massage your weak areas with it as it can build/rebuild muscle mass, which atrophies with ALS.  I ordered a case of Fuel for Thought (F2T), a new nutritional drink that contains as much MGT as 15 Tablespoons of Coconut Oil.  The DP calls for ingestion of 12 Tbsp/day of coconut oil to gain the maximum benefit.

F2T was developed primarily for people with Alzheimer's, and they are currently studying its use as an Alzheimer's treatment at the Byrd Research Institute.  Each 2.5 fl oz bottle of F2T contains 2 doses, and helps fuel the brain for the entire day.  Several people indicated they had problems ingesting coconut oil/caprylic acid, but had no problem ingesting the F2T drink and were getting all the benefits of the MGT's from the coconut oil as indicated in the DP.

DP can also cause some stomach distress, and I experienced that on Wednesday and Thursday.  I was at work all day Wednesday but in the bathroom every 30 minutes.  I took a sick day on Thursday and starting eating yogurt again every day to counteract the GI issues.  Some people on the Inspire website indicate the symptoms usually get better at around 3 weeks.  The DP has a challenging pace throughout the entire day, and it is a struggle.  There are a lot of nutrients/supplements in the DP that you have to take.  Fortunately, Simplesa makes and sells a complete DP protocol in packaged powder (or liquid) portions that make it a little easier, although you still have to take something every hour. 

I have noticed more spasms at night, and I had some leg cramps this week.  Kim called Rite Aid and had them fill my Baclofen prescription, which the doctor had called in during my clinic day in early September.  I will probably start taking Baclofen to decrease the spasms and cramps.  I have to be careful when adding something new since I am already taking so many medications and supplements as well as the Chinese herbs, so will start with a half tablet.  This is one of those drugs that you have to wean off of and not stop cold turkey, so I have some trepidation about starting it.

Mom

Two months ago mom decided it would be best for her to leave the apartment in Charleston where she has lived the last 20+ years and move to Charlotte to live with Chuck, Leigh, Elijah, Benjamin, Amelia, and Ginny in their newly purchased house.  This was a big decision for her and one that she has fought against for several years. 

Chuck drove up to Charleston about 5 weeks ago and helped her pack some boxes that he took back to Charlotte in his car.  He emailed me and asked if I could go down to help mom pack up more of her apartment to get ready for the move.  At that time, he couldn't give her a date for the move as their lives and weekends are very busy.  Chuck and Leigh own their own optometry business in Charlotte, and just moved into a new house in August and still haven't had time to unpack everything.

Two weekends ago I went down to help mom pack.  During the week I stopped at the local UHaul store and bought a 25-pack of small boxes and some packing tape.  Took a half day vacation on Friday and drove down after acupuncture through heavy rain that obscured the beautiful fall mountains, but finally arrived safely around 7PM.  I hadn't been down since we picked her up in August for our NC Mountain family reunion.  Mom was struggling and frustrated, not sure how to get started, what to do first, how to pack, etc.  We went out for a late dinner at Red Lobster and had a nice visit, although she couldn't understand much of my speech.  I brought my old sleeping bag and slept on the floor.

By late Saturday morning we had gotten past the frustration and immobility and were making good progress, packing up her large front room closet and her storage area in the hallway.  We packed all afternoon then went to Joe Fazio's for a nice lasagna dinner to celebrate.  Packed some more when we got back to the apartment, then turned off the lights and crashed.

Sunday we got up and I went to church with her.  We attended her Sunday school class, which was very nice.  Thought about staying for church, but the weather was rainy, and I wanted to get started up the road to home.  Before I left, I asked her if she would be interested in moving the next weekend instead of waiting until 11/8.  Leigh and I had discussed when mom might be able to move on Saturday morning, and those were the only two possibilities.  It didn't seem feasible to do the following weekend when Leigh and I talked, because we hadn't started packing yet.  But because we had made such good progress, it was a possibility.  I could see she was struggling, wasn't eating or sleeping well, and it was taking its toll, so I felt that sooner would be better than later.

I left her with that thought and headed back up the road.  Mom said she would sleep on it and pray about it and let me know.  It rained half of the way, so again I didn't get to enjoy the beautiful hills and trees at their peak.  I called mom when I got home to let her know I was safe and she indicated she thought it would be best to get 'r done.

I emailed Chuck and Leigh that night and we started putting plans in place to make it happen.  We started out thinking that Chuck and I would finish packing and load a rental truck that Chuck and mom would drive back to Charlotte.  But that would require Chuck to trailer his car and leave mom's car behind.  We ended with Chuck hiring the moving company that moved them into their new house, which was a much better plan.  We'll use some of mom's funds to pay the costs.  I stopped at the local UHaul store again and bought several boxes of plastic bubble wrap to wrap mom's artwork and fragile items.

So, last weekend, Kim and I left work at noon (after acupuncture for me), and made the 5-hour drive to Charleston.  The trees were still colorful but clearly past their peak.  Still some vibrant reds, oranges and yellows in a few shady spots, but a lot of dead brown leaves in a lot of places.  Kim split the driving, which was a nice treat for me!

Mom was in better shape physically and mentally and more optimistic when we arrived.  We unloaded our packing supplies then took mom to dinner at Olive Garden.  Dropped mom off and checked into our hotel - Four Points Sheraton on Kanawha Boulevard, formerly the Charleston House hotel, directly across from the Levee.  I must say I was pleasantly surprised - the property was much nicer than when it was the Charleston House, and the rooms were very comfortable.  Chuck got in very late.

Kim and I had breakfast at Panera's and then drove to mom's apartment to get started with the final packing.  Chuck and I packed up stuff in mom's area of the basement and carried the items upstairs.  A lot of unimportant things we left behind - rocks from family vacations, etc.  We got the artwork and mom's hanging clothes wrapped and put them in the back of Chuck's van.  We then tackled all of the rest of the rooms and items other than the refrigerator.  Mom gave a lot of things away - 6 metal shelving units, file cabinet, some miscellaneous furniture, grandma's plant, etc.  Chuck and I carried them down and left them in the alleyway.  They didn't stay there long - the locals carried them away quickly.  One younger Russian lady took most of it and was very grateful and pleased as she carried it down the street in many trips.

It took all 4 of us all afternoon to get it done, but we finished around 4PM, in time to go back to the hotel and watch the last few minutes of the WVU/Baylor game.  We left some stuff for the landlord to clean up (he wasn't much of a landlord, so we didn't feel bad).  Mom paid a security deposit 20+ years ago, but the property had changed hands twice, and we knew she wouldn't get anything back.  He needs to do a lot of work before he can rent it out again.  With both kitchen faucet handles turned wide open, it takes at least a minute to fill a 16-oz cup - ridiculous!  I don't know how mom put up with it for as long as she did.

Mom was wiped out but took a nap in Chuck's room.  The hotel is connected to an awesome venue on Summers Street called Recovery Sports Bar, and we headed there for dinner since we were all tired.  It was pretty full since the Marshall game was on, and lots of people were wearing green and white.  Highly recommended - the food was excellent, pretty inexpensive, and large portions.  After dinner, Chuck put mom to bed in his room, burned a thumb drive on his Apple MacBook with the Ice Bucket video, then went out to meet his childhood buddy Kelly C. since he wasn't sure when he might get back to Charleston in the near future.  Unfortunately, my Windows PC didn't recognize the Apple-formatted thumb drive.

We met in the lobby Sunday morning and had a great breakfast at First Watch on Summers Street.  I highly recommend it, also!  I noticed that mom wasn't wearing her apartment and car key around her neck as usual, so I asked her about it.  We drove back to the hotel and knocked on their door where the maid was cleaning and she had just found it under the pillow on the bed.  Yeah!  The plan was for mom to follow and drive her car behind Chuck's van 4 hours to Charlotte.  None of us were sure she would be up to the challenge, but fortunately she didn't have to drive the entire way.

Kim and I said our goodbyes in the hotel lobby around 10 and headed back up the road while Chuck and mom went to her apartment to pack the fridge and wait for the movers.  The movers arrived around 1PM, and had the entire apartment packed on the truck within an hour - amazing!  It would have taken us many hours to do it ourselves.  They were on the road around 2:30 headed down the WV Turnpike/I-77 to Charlotte.  The moving truck caught up with them, and Chuck asked the passenger if he would drive mom's car the rest of the way, which he was happy to do.   Mom got to ride with Chuck the rest of the way, to everyone's' relief!

They arrived in Charlotte around 7PM, and the movers unpacked everything and left.  Mom got to sleep in her own bed in her new room, and was happy to do so!  I talked to her earlier this week and she is sleeping better and eating regularly and everyone seemed to be adjusting well.  It will be a big adjustment having Mimi living with them and for Mimi to have lots of noise and activities, but we know this is the best move for her.  At age 84, she needs some help, and she will receive that in Charlotte. 

Traveling two weekends in a row took a lot out of me, but I cut the grass Sunday afternoon after we got home.  It felt good to get a little exercise after driving the entire way home.  It is impossible to cut the grass after work now since it is almost dark now when I get home, and soon we will "Fall Back" and it will be dark before I leave work.

Sorry it has been so long between postings, but we needed to take care of family, which we have done.  I'm happy that we got mom moved right away and she will be with family who will nourish her and help with her needs. 

We're making plans to go to Charlotte for Thanksgiving to check in and see the new house.  Dad said he will come up from Pensacola.  We are debating whether to fly or drive.  I am a little concerned about Ebola in the U.S. and the lackadaisical response the feds have taken with allowing so many people around the Ebola outbreak to travel, so I am thinking about driving.  That would also allow us to take a cooler with all of my meds and herbs and bring some food with us to the family party in Charlotte.

Next weekend Kelly and Jean will visit and we'll go see Cirque du Soleil at the Giant Center at Hershey!