How I Am Feeling

Two for the price of one today!  :)

Kim suggested that I let everyone know how I am feeling and doing, both physically and mentally.  Honestly, I am really feeling great! :)

Like everyone over the age of 50, I have my struggles with my body, but mostly minor ones.  I have been blessed with good health most of my life.  I have had a lifetime of dental work, TMJ, chronic, year around allergies (not good in central PA), and my wife says that I poop too much.  She's just jealous!

My TMJ and allergies have been compounded by my ALS symptoms so that I am not sleeping as well as I once did.  My jaws and teeth ache in the morning, I have a terrible gag reflex, and I have trouble finding positions where I can breathe easily in order to sleep well.  My mouth seems dry during the day, but I have excess saliva at night, especially with a mouth guard, so I keep a drool towel handy.  Excess saliva is one of the symptoms of ALS.  I have a prescription to help with that, but because I only seem to experience it at night, haven't started taking it yet.

This morning I went to my dentist for a TMJ consult.  I have carried my stress in my jaws all of my life, and until I started having muscle spasms in my face, throat, and jaw, I was able to keep it fairly well under control.  When it got bad, I would wear my night guard for a while until it passed.  Now, it is constant.  I finally decided to do something about these issues so that I feel better, don't grind my teeth away, sleep better, and have less jaw and tooth pain.  Fortunately, Dr. Carney says he can help me and is going to bypass a lot of the expensive TMJ testing they would normally do and move directly to getting me fitted for a dental appliance I can wear during the day and another one at night to address the issues and deal with my apnea and receding lower jaw (another ALS symptom) to deal with the apnea and help me breathe and sleep better.  When I can't breathe through my nose at night, I don't sleep.

The muscle spasms caused by my ALS in my arms and legs are sometimes difficult to ignore, especially when I am trying to sleep.  I have some weird localized pain that may or may not be ALS-related, like in the heel of my left foot.  Of course, every new pain makes me wonder if it is ALS-related and worry a little bit.

The biggest issues that have manifested with my ALS so far are my dysarthria (unclear speech), and issues related to eating and swallowing.  I have to chew more with my mouth open because of the partial paralysis of my tongue and jaws, and I have some difficulty swallowing some things.  When I drink or swallow, I gulp some air, which makes me burp.  I cough more frequently, either from swallowing saliva or drink or food.  I seem to yawn a lot more than I used to, and I don't know if that is an ALS-related symptom or may be caused by my major reduction in caffeine intake.  It takes me a lot longer to eat a meal than it used to, and I have to cut my food up in smaller pieces.

My gag reflex seems to be somewhat better.  I bought some small sugar-free (stevia) mints and menthol lozenges that I use often, which seems to help - not sure if it repositions my tongue or why it may work, but it certainly does help when my throat starts to tense up to have something to fight that feeling.

Although my arms and legs are constantly spasming, I don't think that I have lost any arm strength yet.  I feel that my walking gait may have changed a little bit, although that could just be my hypochondria.  I don't have any real trouble walking or taking stairs at this time.  I used to get up most mornings and walk on the treadmill, but I stopped doing that because I don't want to wear my muscles and motor neurons out any faster than I have to.  However, with my trip in September and planning to do some hiking and horseback riding, I think I need to start walking again - maybe not as fast or as long, but I don't want to be completely out of shape at high altitude.

My friend Steve suggested that I get a Lyme test, because sometimes Lyme can cause ALS symptoms.  I did get a test and it came back negative, darn it!  If it had been Lyme, it would have been treatable.

My TMJ dentist today suggested osteopathy to help with some of my other symptoms and offered to investigate to see if there is someone in the are he would suggest.  I am also considering acupuncture to see if that might help reduce some of the spasming, help reduce TMJ, or help with my chronic allergies.

I did find a paper on the NIH website about 2 ALS patients treated with acupuncture and a homeopathic liquid called Enercel in Florida.  I have made some inquiries, but am not sure they are on the up and up.  They didn't conduct any clinical trials.

I also checked out the BrainStorm/NurOwn research studies in Boston last week and attempted to contact the 2 lead doctors to find out when they may start accepting patients - the website indicated that they had not started to do so yet.  I figure if I was accepted in either Boston trial, I could drive or ride the train, plane, or bus to Boston from Harrisburg if I needed to or stay with some friends or family or hotel close by when I needed to be there for longer periods of time - such as when they harvest the bone marrow from your hips in order to gather the stem cells required for the NurOwn treatment.  It is a treatment, not a cure.

Kim found some articles on diet this weekend that I need to look at closer - Ketogenic diet.  May help ALS patients.

My friends, coworkers, and family keep me buoyed up with their kindness, caring, thoughts, actions, and prayers.  My wife fills my days and nights with love.  I am indeed a lucky man!

Medical breakthroughs happen every day, and I am hopeful that we will see a breakthrough for ALS treatments and maybe a cure in my lifetime.

So, overall, I am feeling fine, mentally and physically.  If I can get some help for my TMJ and allergies so that I can sleep better, I will be very good, indeed!