RIP Uncle Frank Cooley 12/28/2014

 

If you read through my Colorado Bucket Trip story, when we left Denver on 9/5, we headed straight to Grand Junction to see my Aunt Geneva and Uncle Frank as well as cousin Frank and wife Margie.  It had been almost seven years since Kim and I had last seen Frank and Geneva on our 20th wedding anniversary road trip through Ohio in 2007, which started in Cincinnati with a visit with them and mom and Frank's sister Elizabeth before we headed to Akron for the Football Hall of Fame and then to Cleveland to see Don and Helen.

Cousin Loraine called this afternoon to let us know that Uncle Frank passed away today after having contracted the flu.  He was very weak and had been in the hospice at the VA Hospital in Grand Junction for many months.  Margie emailed and reported that he passed peacefully around 1:30 this afternoon and that both Frank and Geneva were there with him.  Our thoughts and prayers have been with them daily, and tonight I am praying harder for wife Geneva, sister Elizabeth, son Frank, daughter Loraine, and daughter in law Margie.

I'm very glad that we were able to see Uncle Frank this fall and spend some time talking and laughing with him and Aunt Geneva as well as Frank and Margie.  Although Uncle Frank's body was failing him his mind, wit, and humor were still very sharp and evident and he cracked us all up with his word play and jokes.  He was a lifelong Cincinnati Reds and Bengals fan and loved to talk sports.

Our thoughts and prayers are with Frank's family.  We love you and will miss you, Uncle Frank.

ALS Clinic #3 - December 10, 2014

Today was a long and exhausting day.  Kim and I got up at 5:30 this morning and were at Hershey Med Center Neurology at 8AM for my third quarterly ALS Clinic.  Fortunately the snow passed us by last night.  There was some good news and some not so good news.

My Forced Vital Capacity score was 84, down from 89 in September and 96 in May.  To be honest, I expected it to be worse because of the difficulty I have breathing at night, which is related to my chronic sinus condition.  While it was disappointing that it went down, I am happy that it wasn't worse.

The reflex tests were exaggerated indicating nerve and muscle damage.  Occupational therapy evaluated my arm and hand strength.  My right hand (dominant) grip strength was about 60 pounds, compared to 80 pounds for my left hand.  That explains why my handwriting is getting worse, it takes me longer to do almost everything, why I have some trouble shaving in the morning, have trouble opening things, and am dropping things frequently.  My weight was down several pounds also, which they have been cautioning me about.  It is hard to eat when I am at work, and it takes me a long time to eat a large dinner - about 45 minutes.

They didn't find a major loss of strength in my legs, but they feel very spastic to me and I cannot walk as smoothly or as quickly as I used to.  When they tested my ankles they found some catching, which may explain part of my walking slowdown.  However, I can still do 30 minutes on the treadmill without getting out of breath or feeling like I am going to fall, just at a slower speed than I used to walk.

The good news - swallow is still good, not much change since September.  Surprised everyone since my speech is completely gone for all practical purposes.  My blood pressure was good.  The physical therapist walked me down to the PT room observing me as I walked and then had me walk up and down 4 steps 3 times and didn't notice any balance, strength, or wobbliness issues on the steps or on the walk down the hall to and back from PT.  She did say that I walked with my head forward, but we think that has been the case for a while.  She suggested I should work on my posture and try to get my keyboard and computer screen raised more to my eye level to keep my head up.

The push is on for me to agree to let them install a PEG feeding tube to ensure that I am getting enough food and fluids and to help prevent me from aspirating food into my lungs.  The feeding tube would be directly inserted into my stomach and it would be fairly inconspicuous, although it might be noticeable if I wear a tight shirt.  The doctors, nurses, and nutritionist indicated it wouldn't limit my ability to travel or do any physical activities.  They suggested that I might want to do this sooner rather than later.

We also talked about a diaphragm pacer that may help me long term before I would need to use a non-invasive ventilation system such as a BiPAP.  Can often delay the onset of using an NIV by a year.  The diaphragm pacer system requires an external power pack that must be carried everywhere, which may be more limiting in terms of travel and normal activities.

Both devices could be installed at the same time on at outpatient basis.  Lots to think about and I am not in a hurry to make a decision on such important topics.

I also asked to be tested for mercury toxicity, and Dr. Simmons agreed to write the lab order for me, although he indicated that he didn't feel that we would find anything.  My first symptoms started a week after I received my flu shot last year.  I didn't realize that most flu shots contain Thimerosal, which is a preservative that has organic mercury in it. 

I have been severely grinding my teeth for more than 6 years, and I have a lot of large amalgam fillings in my molars.  I knew amalgam had mercury in it, but I was very surprised to learn recently that amalgam contains 50% mercury!  Mercury is one of the most toxic substances to the human body, and can cause sinus issues and brain and motor neuron damage.  My sinuses and gag reflex have gotten worse every year that I have been grinding my teeth at night.  I have several mouth guards, but my terrible gag reflex means that I often cannot tolerate one in my mouth at night.

These days, I grind my teeth 24x7 due to the muscle spasms in my face and jaws, and I can feel my fillings disintegrating, which means that I am ingesting more mercury into my body in addition to the mercury vapors that leach from the fillings.  Since the teeth are so close to the brain, sinuses, and eyes, amalgam fillings can cause significant bodily damage.  I am anxious for the tests and to see what the results are.  I am educating myself on amalgam mercury toxicity and treatments.

I gave three vials of blood for two ALS research projects today.  Heidi had trouble finding a vein in my right arm so we tried my left arm and eventually found a vein, but it came out as a slow drip, and filling 3 vials took more than 10 minutes.

We finally got out of the ALS clinic around 12:30 and headed to Panera's for a bite of lunch before driving over to Nyes Road for my annual dermatology checkup at the Hershey Med offices at 2PM.  No major issues again this year, but about a dozen sun damage places frozen off my face and head.  Finally got home around 3:30.  Kim and I were both exhausted!

The day was emotionally and physically draining, but all in all it was a pretty good clinic report.  So it's early to bed tonight after a full day missed from work and back to the office and PA Turnpike tomorrow.

Thanksgiving Update

Kim and I drove down to Charlotte to brother Chuck's house to spend Thanksgiving with Chuck, Leigh, Elijah, Benjamin, Amelia, mom Margaret, and dad Don.  Dad flew up from Pensacola.  Unfortunately his wife Helen was not able to join us and Forest couldn't get any time off to join us from Denver.

We had planned to leave early Wednesday morning but with the forecast for an East Coast winter storm, we decided to leave Tuesday afternoon after working a partial day.  Traffic was very heavy and we didn't get to our motel in Roanoke, VA until 5+ hours after we left Mechanicsburg.  It was a long drive after work and in the dark, but we made it.  We were both exhausted by the time we got there. 

We slept in the next morning thinking it would be an easy 3 hour drive to Charlotte, but the winter storm caught up with us and we drove through blinding snow for 3 hours before losing enough elevation to leave the storm behind us.  There were numerous wrecks and 8 deer ran across the road just in front of us during the snowstorm.  It took us a total of 5 hours to get to Charlotte around 3PM.

Mom and the kids were there when we arrived. We passed Leigh on her way to pick up dad at the airport.  Chuck got off work and was home around 6pm, so we could celebrate being together again.  Amelia was kind enough to allow us to sleep in her bedroom, and Elijah and Benjamin gave theirs up for dad.

Chuck brined a 25 pound turkey, and it was delicious!  We had quite a spread for Thanksgiving with Turkey, Ham, candied sweet potatoes, mashed potatoes, green bean casserole, dressing, cranberry sauce and cranberry relish.

We had a short but very nice visit with everyone!   I communicated using my iPad and Proloquo4text software so that people could understand me.  On Friday we drove over to see Chuck's optometry practice and the entire family decorated their Christmas tree in the evening after dinner. We missed Forest and Helen but hope to see them in the next few months.  Forest has a week off at the beginning of March, so we'll see what we can figure out.

Saturday morning we left Chuck's around 9:30 for the long drive home.  Lots of traffic but better weather this time, and it took us about 9 hours overall.  A long day, but we were very glad to be home and sleeping in our king size bed and to have a day to recover before heading back to work!

My Electronic Voice and new treatment therapies

After struggling for months to be understood, Kim and I decided that I should buy a new iPad tablet and software to allow me to communicate.  It was becoming very frustrating for both of us to not be able to understand my unintelligible speech.  I tried to find something that would work on my old iPad 1, but since it wouldn't upgrade to iOS 7, it doesn't download new programs and many of my old programs crash regularly.  At this point it is really only useful for emails and storing music and photos.

I was able to find an iPad Air on sale and researched available Augmentative and Alternative Communication (AAC) software.  Schanzenbach had originally recommended Proloquo2Go, which uses symbol grids to communicate, but I felt it was targeted more at children and people without the ability to type.  I looked at Proloquo4Text, and decided to try it.  It allows me to configure and "bank" different shortcuts for commonly used words, phrases, etc. and has a pretty good word/phrase prediction engine.  Now I just need to become a better and faster typist!

I also bought a protective case with a Bluetooth keyboard and an external Bluetooth speaker to boost the volume and clarity of the AAC device, which will work up to 30' away.  I am still getting used to my new AAC capabilities and having some difficulty with the small Bluetooth keyboard and being able to type quickly enough to carry on a conversation. 

I tried a couple of phone calls this week using the speakerphone and my external speaker with limited success - I need more experience.  When I called Kim the first time and didn't hit the Play button quickly enough, she hung up on me.  When I redialed and she picked up and heard an electronic voice asking her questions, she asked "WHO IS THIS!?".  She figured it out when I started laughing.

I have a few presentations and meetings in the next few weeks, so I am hopeful to see some improvements this week as I gain familiarity and get things set up in the software to be more efficient.  I forgot my iPad on Friday and tried to use my iPad 4s phone in my afternoon meeting, but quickly got frustrated with the tiny iPhone keyboard.

I finally asked for a disability accommodation at work and they put me in touch with a CIGNA assistive technology and ergonomics specialist who is now working to try to find a good solution for me to use at work that may be more portable than my larger iPad Air.  She also indicated she could do an ergonomics evaluation of my office to determine if there is anything they can do to help me be more comfortable.  Since I started having some shoulder and neck pain in the afternoons and evenings this week, I plan to ask her to perform the ergonomics study.

It has been a week since my last acupuncture treatment.  I still have some deep bruises on my legs from the last treatment I received.  I am not missing the painful treatments or Chinese herbs!

My muscle spasms are still pretty bad.  I started taking Baclofen a week ago to see if that would help but haven't noticed any improvement yet.  I am taking half a tablet 2-3 times a day and can go up to a maximum of 3 tablets a day.  It can cause drowsiness, so I am cautious about increasing too much right away.

I saw my internal medicine doctor for the last time last week.  He is leaving the practice at the end of the year after 21 years as he is tired of the daily grind of seeing 25 patients every day and the ever increasing workload that has to be taken care of outside the office on evenings and weekends.  One thing he did was prescribe a nasal steroid, Flonase, to get me off Afrin to see if it will help me breathe better at night.  I can't sleep on one side all night long like I used to and usually end up sleeping propped up in bed in a sitting position for an hour or more every night until my sinuses clear up enough to be able to lie flatter again.  I'm not sure if that is the cause of my neck and muscle pain or if it is an ALS symptom.

I ordered some magnesium chloride from Amazon last week as well as some books, including "Eric is Winning" and "The ALS Diet".  It had been on my list of ALS treatments to research since several PALS on the Inspire website indicate it has helped them.  It can be ingested as well as applied to the skin, both of which may help with symptoms. 

Kim and I are in State College this weekend visiting Jean and Kelly.  I went to Wegman's on Saturday to get some sushi and do some grocery shopping for Jean since her car is at the garage.  I ran into my friend Patty B. who works there and she was very kind and gave me lots of hugs as we met each other different places throughout the store.  She reminded me that I haven't updated my blog much recently, so thank Patty for this blog posting.  I hope to see Patty and Eric over the Christmas holidays while we are in State College.  I also got Ellen and Bob's email from Jean so that I can thank them for sending me so many wonderful and uplifting cards.

We ordered out a Home Delivery Pizza last night.  I tried my first gluten free pizza crust, and was very disappointed.  It was tasteless and didn't have a nice texture.  No seasonings, which would have made it better.  Couldn't taste the pizza sauce.  Although it can be a lot of work, I think we need to make our own gluten free pizza crust.  I'm not ready to give up on pizza in my diet!  I tried some Udi's gluten free cinnamon raisin bread this morning, and it was pretty good.

I made some decent beef stew late last week and we had that for dinner Friday night.  I only had London Broil in the freezer, so the meat was a little tougher than what I would normally use.  It is a good meal for a cold day, and we'll be eating more of it this week in response to the blast of frigid air coming our way.

I guess the final bit of news I'll leave you with is that an independent writer for a local magazine contacted me about a week ago to ask if I would answer some questions for an article about ALS that the editor wants to include in the December edition.  I sent her my answers to the last of her questions yesterday and am waiting to see if she has any follow up questions this week.  I look forward to reading the completed article!

More Anniversaries Today

Today marked 3 years at Michael Baker.  Time flies when you are having fun!

Today was also the 6 month anniversary of my ALS diagnosis in May at Hershey Medical Center.

This week I dropped to 2 days a week for acupuncture due to the costs of the treatment, and today my doctor told me that we should take a break for a month and see how the Deanna Protocol goes.  I am ready for a break. 

I am just finishing Week 3 of the DP, and I have been taking Fuel for Thought (F2T) for 10 days now to get the full benefits of the DP by maximizing the amount of coconut oil/caprylic acid/multi chain triglycerides (MCTs).  Supposed to get 12 Tbsps/day if possible - not easy to do ingesting coconut oil.  Two doses of F2T is supposed to provide that much.  I am very hopeful that we can slow down the progression of the disease and possibly regain some of the function that I have lost, especially improvements in speech and swallowing.

I started using my PowerLung this week to exercise my lungs and diaphragm and hopefully improve my Forced Vital Capacity score when I go to my third ALS clinic next month. 

If my sinuses and allergies improved, I would sleep a lot better and feel a lot better.  I see my primary doctor on Monday and am going to ask for a referral to an Ear Nose and Throat expert to see if they can figure out what is going on.  I can't lie flat and breathe through my nose.

I decided not to wait any longer on getting some communications software.  I have a big project kickoff meeting in 2.5 weeks, I'm visiting family in Charlotte for Thanksgiving, and I need to be able to communicate with Kim, work, and friends daily.

It has been very frustrating over the last month not being able to communicate verbally with Kim, family, friends, and coworkers.  Only Ty at the PA Turnpike seems to be able to understand anything I say anymore, and he is only getting about 1/3 of it.  I have been reduced to writing notes to communicate.  Kim isn't very happy that we can't communicate better than we do.  I can't wait for OVR or Baker to take care of this for me, I have to do it myself.  It's time.

I need a new iPad to run the communications board software since my ancient iPad 1 isn't upgradeable to iOS 7 which the software requires.  It works about half the time and crashes often.

I ordered a new iPad Air tonight (v1, since the v2 is getting bad ratings for sound vibrations) plus a smart cover and Bluetooth wireless keyboard/stand.  Now that I'm not spending large sums of money for acupuncture any more, it seems like a good decision.  I pick up my new iPad Air at Staples tomorrow morning and will download the Proloquo2go software from the iTunes App Store and start learning how to use it this weekend.

Knudson Brothers Ice Bucket Challenge 9/11/2014 at Estes Park, CO

I've been waiting for brother Chuck to provide the video for a few weeks, and finally have a copy.  Thanks to Chuck, Forest, and Don for an amazing trip and amazing ALS Ice Bucket Challenge.  Thanks to Chuck for a great video edit!  Love you all!

This is difficult to watch.  You can tell how emotional we all were and how much my speech has degraded.  But you can also see what a great time we had together!  It was a huge bucket list trip for me!

We were challenged by my sister, Amy Burgett.

I challenged my friends I worked with from MapQuest and GeoDecisions.  A few people from each organization have completed the ice bucket challenge.  Thanks to all who did so for me!

One Year Symptom Anniversary

Kim and I celebrated our 27th wedding anniversary last week.

It was a year ago today that I first noticed speech difficulties a week after getting my annual flu shot at work.  A lot has changed in that year!

My six month ALS diagnosis anniversary is next week. 

I have experienced a continued general degradation in my speech and swallowing during the year.  It is very difficult for me to talk and be understood by anyone these days.  I am experiencing fairly severe muscle spasms all over my body.  I don't sleep very well at night because I have trouble finding a position where I can breathe comfortably with my sinus allergies/ALS symptoms.  Some days I feel like my hands and legs are weaker, other days I feel normal.

I met with the Department of Labor and Industry (L&I) Office of Vocational Rehabilitation (OVR) this week to talk about getting a communications board tablet computer and software that has pics/text to speech capabilities to help me with my verbal communications.  Also sent an email to Baker HR to request an accommodation to help pay for the device and software.

I started doing morning Tai Chi/Qigong exercises before work to provide stretching, strengthening, energy, and improved breathing.  I still do some walking on the treadmill, but not as intense or as long as I used to.  I ordered a PowerLung device this week to strengthen my lungs and diaphragm and started doing breath stacking exercises to help also.  My Forced Vital Capacity (FVC, measure of lung/breathing health) went down some in my second ALS clinic in September, so I want to do some exercises to keep it from worsening, and hopefully see an improvement at my third clinic in December.

I've been taking Chinese Herbs and doing intense acupuncture therapy for ALS for 6 weeks.  I have been on the Deanna Protocol of nutritional supplements for ALS for 2 weeks.  The Deanna Protocol suggests ingesting 12 Tbsps of coconut oil every day, but I have had difficulty ingesting 2 Tbsps.  I ordered a case of Fuel for Thought (F2T), which provides the equivalent of 15 Tbsps of coconut oil daily in a 2-serving 2.5 oz bottle and I am on day 4.  Can't drink it straight, but I am getting it down.  F2T is currently being researched for Alzheimer's treatment and has shown benefits for most neurological conditions by providing energy for healthy brain and nerve function.

I hope to see some significant DP benefits by week 4!

Jean, Kelly and Liam are visiting us this weekend and we are going to see Cirque du Soleil Varekai at the Giant Center this afternoon.  Should be fun!

NO WHITE FLAGS!