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.