Duke ALS Clinic Update~My second visit

February 16, 2010

On the first appointment Don met with Jennifer Haynes, MA, CCC-SLP and Kevin Caves, ME, APT, RET at the Duke Speech and Language Pathology Clinic.  Jennifer is a Speech Pathologist who evaluates and provides treatment to address progressive dysarthria of speech (slurred speech) and dysphagia (swallowing problems).  Kevin is more involved with the role of assistive technology in meeting communication needs.  Kevin is the technical engineer that makes daily living with the least amount of effort available with the help of the computer.

Kevin said, “Don’t assume you have to stop doing something because it is to hard.  There are other ways.”

Jennifier had Don read  article that she timed to get his speech rate.  The normal functional rate is 160, which Don had.  She did evaluate that Don did take a breath every five words, which she said was probably respiratory, not speech.  Don’s base line is 160 and they will check him on each visit to see if this changes. 

Jennifier also gave Don a clinical swallow evaluation.  At this point in time, Don has no problems swallowing.  This an area that most ALS patients start having problems. 

Jennifier checked the muscles in Don’s face, throat and tongue.  All seem to be strong. 

Our next appointment was at the ALS Clinic across the Duke campus.

The first therapist to see Don was Andrea Johnston, the respiratory therapist.  She tested Don’s lung volume and air flow.  Don scored a 44 on the strength of the diaphragm muscles.  She then tested him for his forced vital lung capacity (FVC).  Normal for a man of Don’s height and weight is 4.95.  Don’s was 2.76.  From these tests Andrea told Don that his total was 55% predicted.  Andrea told Don to continue using the BiPap machine as it opens the lung tissue and rests the diaphragm.

At 2:00 pm we met with Susan Stevens, RD, LDN.  Susan is the registered dietician.  She said the Don had lost six pounds since his first visit in December.  She suggested that Don eat every five hours taking in lots of protein.  They want him to maintain his weight and do not recommend losing weight. 

At 2:30 we met with Dr. Richard S. Bedlack, MD, PhD, who is the Director of the Duke ALS Clinic.  He told us that the blood tests he had ordered after our December visit for possible copper deficiency or the paraneoplastic neurologic syndrome came back from the lab as negative.

These were the only other things that could cause symptoms similar to ALS symptoms.

Dr. Bedlack also said that the Emory stem cell clinical trials had started in January with one of the 12 patients that were selected for the trial.  It sounded to us that they were not testing all 12 at once, but adding a new patient to the trial monthly.  Therefore, it will at least be a year before they make an evaluation on the stem cell trial.

Dr. Bedlack told Don that there was no trial available for Don’s condition at this time.  His breathing is too low.  He is currently at 55%  The patients need to be at least between 60% to 75% for the current trials.  He said he will keep looking for any trial Don would qualify for 

Dr. Bedlack went on to say that 55% predicted breathing puts Don in to his last year of the disease.  That was a shock to hear.  He also said the he recommends a feeding tube be inserted for patients with 50% or lower.  This is a preventative measure, as in Don’s particular case he currently has no signs of swallowing problems.  Don’s form of ALS has a shorter survival rate, as it effects the lungs.  Dr. Bedlack ordered a chest x-ray when we return home as Don has had congestion for the past two weeks. 

Dr Bedlack said it was time for Don to get a power chair.  He recommends a Purmobile for all his ALS patients.  Because we live in Tennessee they are going to have the Purmobile representative come to our house to measure Don for the power chair. 

Dr. Bedlack gave Don a prescription for sleeping pills as he has trouble falling asleep and staying asleep.  This should help with that. 

Dr, Bedlack said that Don was doing all that he could to fight this awful disease.  He is attending an ALS Clinic, he is being an advocate for ALS and if a trial comes up that he can get in, he will.

We had both an emotional and physical exhausting day at Duke.  We have a lot to absorb from this appointment and will continue fighting against the odds as we continue with this journey.

Our next appointment at Duke to see Dr. Bedlack and his staff will be May 25th.

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2 Responses to “Duke ALS Clinic Update~My second visit”

  1. steffen5 Says:

    Dad,

    I have always been a person that likes to beat the odds and know in my heart and soul that you will be here for more than the stated year. So lets pull up our boot straps and get to work. Power of positive thinking. Miracles are happening and we have a lot more to do together in this life time here on earth. I love you more than you can imagine and I know that if anyone can beat the odds you can. Like I said before ALS doesnt have a clue of the power of the Steffen strength. I love you dad!
    Ang


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