The Relentless Progress of ALS

P1070206 (1024x768)Yesterday Alan and I went to see my first neurologist for a routine quarterly checkup. Dr. H is following my progression and guiding us in terms of treatment for some of the symptoms.

One of the symptoms that has been giving me a little trouble is muscle cramping. It seems to occur mostly in my hands and in my abdominal muscles. I am still using my long styluses with the iPad and a bit on the laptop. Too much of this will cause cramping, especially in my right hand. It also happens  sometimes when I am using the control joystick on my power chair. I have also discovered that deep belly laughs, while good for the soul, lead to abdominal muscle cramps if it goes on too long. My doctor has prescribed gabapentin to ease the cramping.

I have been having some problems with my curling fingers. Dr. H suggested gentle stretching to try to coax the ligaments back into a more normal position. We may try some kind of a hand splint as well.

We discussed the feeding tube at length. I was relieved that the doctor supports my decision (for now) to postpone placement of the tube. I will, however, schedule a consultation with the gastroenterologist. The tube placement can wait.

Next month, I will visit the ALS clinic at UCSD. At that time, they will test my breathing again. The last few readings have been pretty steady. The respiratory progression is very, very slow. Relentless, but slow.

Speech and chewing are affected due to involvement now of my tongue and facial muscles. Swallowing, however, has not yet become an issue. It may take me a while to chew something, but I can swallow it just fine. Taking pills can be problematic simply because it is harder to move the pills to the back of my throat. Small pills are not usually too difficult. But I had trouble with the gabapentin capsule this morning. My doctor says it’s okay to open the capsule and mix the contents with apple sauce or something. We used yogurt. It tasted vile but I got it down.

One thing I brought up to the doctor is my decision not to have a tracheostomy. He reminded me that the most important thing is that my family knows my wishes. And they do. He also said that in cases of advanced ALS, medical professionals would generally not recommend a tracheostomy. I asked, “Am I ‘advanced’?” “Yes.” was his reply, “Because of the respiratory involvement.”P1000469 (1024x768)

We talked a little about the time frame. There is, of course, no way to know exactly how long I have. It is very difficult to predict life expectancy with any sort of precision, especially with ALS. That is, until toward the end. Dr. H shared with me about an article he had just read by a physician who was diagnosed with metastatic cancer. This doctor wrote about this very dilemma: the need of the patient to KNOW versus the doctor’s awareness of the statistics. Dr. H sent me a link to the article and I share it now with you.

My email inbox each day contains a Google alert for anything having to do with ALS. When research discoveries are made and hit the news, I hear about it. I have been encouraged recently by some of the work being done. Who knows? Maybe they are very close to figuring out a way to reverse the damage to the motor neurons. Maybe it will even come in time to help me. But if not, I am confident it WILL come one day.

Most of the time I don’t feel afraid. I have lived with this diagnosis for about a year and a half. And before that, we knew it was a possibility for several months. I have had time to process and accept the fact that I will not grow old. My faith sustains me. Without that, I do not know how I would cope. It breaks my heart to see my loved ones and know we may soon be parted. But I rejoice that it is not forever! I know The One who holds the future and He knows me. My family and I do not travel this road alone. The progression of ALS may be relentless, but so is my God! And He is much bigger and stronger than ALS.

Love, Patty

6 thoughts on “The Relentless Progress of ALS

  1. Patty, I am just in the early stages of trying to get a diagnosis.I have been increasing pain and spasticity for the last 2 years.My GP is trying one last round of blood tests to rule out tick borne illness or heavy metal toxicity. But, he is thinking that with each test coming back negative that it is looking more and more like ALS. My spasticity and cramping comes all down the right side of my body. Some days are worse than others. I feel at peace no matter the outcome. It is amazing how much deeper you start processing time with others once you face this as a possible diagnosis. Well.. blessings to you and each day we live with Jesus in us and working thru us. God Bless, Melody

    >________________________________ > From: “Ok, so far” >To: >Sent: Wednesday, January 29, 2014 1:55 PM >Subject: [New post] The Relentless Progress of ALS > > > > >Ok So Far posted: “Yesterday Alan and I went to see my first neurologist for a routine quarterly checkup. Dr. H is following my progression and guiding us in terms of treatment for some of the symptoms. One of the symptoms that has been giving me a little trouble is musc” >


    • Hi Melody. I’m glad your doctor is being so thorough. There are so many conditions that are similar to the early stages of ALS. I am still hoping it is NOT ALS. But if it is I am glad you know Jesus. Just keep claiming his promises! Let me know how it turns out.


  2. Patti, It is great to get all this information and I enjoyed the “Give Me Jesus” music. I
    couldn’t finish the cancer diagnosis piece because I had to do some work downstairs.
    Yes, our God is greater, and that is what makes it all so special. Love and prayers.


  3. Hi Patty, Betty asked me if I’d read your blog yet, I hadn’t so I did. You are so beautiful and I so look forward to the beauty of the ” New Heavens and New Earth” with you, and I’m so thankful we walk together here also. Blessings always!!!!!


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