The lazy blogger

This is what I am calling my lazy blog.  It has taken me quite some time to get motivated to write, and I feel as if I have been working on it forever.  I am not sure why it has taken me so long to get serious about it, but it might have something to do with some of the subject matter and the fact that I have been busy working on the ALS Walk.

Saturday, April 21, 2018, was the ALS Walk in Raleigh. It was lots of fun and I was excited to see friends and family who went out of their way to be there to support me. It was a fun time and together we kicked ALS in the butt. We raised over $9,200 and won the award for the best t-shirt design. Being Team Captain and a PALS did not work well for me.  It is very tiring. So a BIG thank you is due to my Team, including Alston & Bird, NCCU and Alpha Phi Sigma Criminal Justice Honor Society, PatientsLikeMe, and Woodlake Cares 4 Kathryn. I had tons of help from friends like Alisa, Ericka, and Eileen, who kept me sane. A special shout out to Maria! Thank you one and all. If I forgot to mention anyone, I apologize.

I had my three month follow-up visit at the ALS clinic on Tuesday before the Walk. I was surprised to find out that I gained back 5 lbs. eating only liquid nutrition through a tube. I am a lot weaker in my arms and my breathing has dropped again, but I expected this news. You see, we have been wrestling with the possibility of transitioning from palliative care to hospice care since the previous clinic visit in January. Hospice was recommended by the doctor and the palliative care nurse.  It was not an easy thing to hear at first. My husband and I mulled it over for a while. At my last visit we were ready to discuss it again with the ALS doctor I have has from the start. It was, as my husband put it, “the elephant in the room.”  We are now hospice “shopping.”

Hospice offers more services but takes away life-prolonging medication like my ALS medication. Initially, I was surprised that they would do that, but I guess that is the point of hospice. Hospice supports you at the end of life so there should be no need for life sustaining medications. I don’t feel like I am about to die, but it is not something that anyone can predict.

So, in the meantime, I am planning on attending ALS Advocacy Day in May. It is costly and all out-of-pocket. If you believe in fighting for all things ALS-related, perhaps you’ll consider making a contribution to the GoFundMe page we set up for the trip: Advocacy Day

This year at Advocacy Day there are four legislative asks. Three of these asks involve funding for existing programs. First, for the ALS Registry at the CDC; second, for the Department of Defense ALS Research Program; and third, for the National Institute of Health, particularly the National Institute of Neurological Disorders and Stroke.  The fourth ask has, to my knowledge, been requested more than once. The fourth seeks to end the five month wait period before ALS patients can receive social security disability benefits.  A diagnosis of ALS automatically qualifies a PALS (person with ALS)  for benefits, but for many the need can be immediate.

The five month wait is, in reality, six months before the first benefit check is received. Some people cannot get by for six months without benefits for a variety of reasons. Even though some PALS may have other money coming in, they could require funds to make their home accessible, among other things.  I have heard of PALS who do not even survive six months.

As for me, I stopped working three months after my diagnosis.  Very soon thereafter I was forced to move from a house I purchased less than a year before. I could no longer climb the staircase to my bedroom. The new home was one level but still  required accommodations.  I wasn’t even able to climb the five front steps without assistance.  Six months post-diagnosis we were already discussing the necessity for a power wheelchair.

Finding a cure for ALS would undoubtedly help people with other neurological diseases.  ALS is one of those rare diseases many people know little about, and many people have never heard of it and how it affects individuals and families. those people include congress people and senators.

So even with hospice ahead of me,  I will continue to advocate for myself and others who will come after me.  Help me by raising ALS awareness.

A Testimonial to Kindness

I recently received gifts from Team Gleason.  This is a testimonial to how real charity works.  #NoWhiteFlags

Can you fall in love with someone you’ve never met?  How about a foundation?  I am completely head over heels in love with the generosity and support for people living with ALS (PALS) shown by Team Gleason.  Before ordering my assistive speech device (Tobii), I wrote to tech support at TeamGleason.org.  I received an out of office message.  Being impatient, I was a little disappointed.  Yet, the day after returning to the office I received a response from tech support with an exhaustive list of recommendations.  I ordered my device which unfortunately did not come with a floor stand so I was not able use it at night if I needed to alert my husband.

I posted in an ALS Caregiver Group on Facebook looking for a used floor stand to purchase. Surprise!  Team Gleason came to the rescue.  I was offered a freefloor stand with no strings attached.  It arrived four days later.  The stand was brand new.  I can now use my Tobii in bed, in my lift chair, or wherever I want.  It is on wheels and gives me the ability to communicate, read and respond to emails, surf the internet, etc.  It allows me to learn more about operating Tobii lying in bed at night while my husband and caregiver gets a much-needed break.

My husband was so impressed with Team Gleason and their knowledge and willingness to help PALS that he sought advice on a replacement shower chair.  Since I could no longer stand, it was very difficult for my aides to get me from Hoyer to shower chair.  It typically took several attempts and we had recently resorted to tilting the chair backwards; not a good idea.  I was usually unable to be seated comfortably and wanted to rush through showers because my legs and feet would go numb sitting in the chair.

Team Gleason offered a solution.  We were flabbergasted when the solution was the offer of the exact custom-built shower chair Steve Gleason uses.  I waited four weeks for it to be built and it was soworth it.  The chair is padded and extremely comfortable.  It can tilt forward and back and has comfortable arm troughs. Best of all, no more numb legs or feet.

 

 

Thank goodness for kindness. Thank you Steve Gleason and Team Gleason.  Your generosity has made my life with ALS a little less frustrating.  Living with a disease where everything is taken away, your donations give back comfort and pleasure.