I have been living with ALS for 14 years. I live at home
with 24 hr nursing care and full time mechanical ventilation.
DIAGNOSIS
The diagnostic process started in June 1994. During the
time it took to get diagnosed I saw 6 Drs and had 3 EMGs, blood work, x-rays,
ultrasounds and a standard neurological test. On March 28 I was told by a
neurologist that I had ALS. I had just turned 47 one month before.
Nine months had passed since the start of trying to find the cause of the muscles weakness in my right arm. I was referred to the ALS clinic in Ottawa and was admitted at the end of April, one month later. Only when I started going to the ALS clinic did I get a glimpse of my future.
The length of time to get a definitive diagnosis was influenced by the following factors: 1-I was sent by my GP to the wrong specialists 2-Reluctance to give a diagnosis of ALS 3-Long waiting lists to see a neurologist My review of literature available to me suggests that the same factors still have an influence on the diagnosis process.
Treatment
There is no effective treatment for the disease process.
The one medication available has a reputation for providing a modest effect. I
have taken this medication for many years and wonder about its efficiency. The
situation remains one of treating the effects of this neurological disorder.
Research has not lead to better treatment over the past ten years. I have used
anti¬inflammatory, antibiotics and a few vitamins. All of which have had no
proven effect. This has been done without a neurologists input. I also use an
anti-depressant and take a few pints of labatts a day.
CARE
When one decides to expend their life by being trached
they must prepare to struggle against many obstacles. The main issue is finding
the resources to survive. Our homecare program is inadequate. The hours of care
that this program can provide is not enough and the nursing agencies involved
are unable to provide the staffing necessary for full time nursing care.
Initially the deficit in nursing care was tackled by finding nurses willing to
work as self-employed. Then investigating concerns about compensation revealed
that in no way did the nurses meet the definition of self-employed. Realizing
that paying the workplace safety insurance premium would be too great of a
burden and that I was probably only one step away from meeting other employers
financial obligations, something had to be done. To avoid these demands I asked
two acquaintances if they would be willing to incorporate the financial aspects
of my care. Once I requested the formation of a company this was done rather
quickly and shattered my mistaken belief that this would be a lengthy and
difficult process. We were able to have the company
incorporated in a week. This was done over 2 years ago. As you can see our
staffing budget is a maximum of $210,860 /yr, $175,500 comes from my benefits. I
can only guess what the goverments monetary contribution is and estimate it to
be around $35,360/yr. I continue to coordinate my own nursing care plan. I also
coordinate staff schedules, write my own care plan, and provide medication
sheets, files and progress notes. Another responsibility is ensuring equipment
is being maintained and supplies are ordered. A big headache for me is
scheduling staff and coping with high turnover and having to deal with staff who
have proved unsuitable. I currently have 11 staff 2 who have been with me for 7
years and only 3 since my trach. Staffing has stabilized since March 2005.
DISEASE PROGRESS
In 1998, almost 3 years after being diagnosed I finally
had to stop walking without assistance. This was a very hard adjustment for me
to make as it meant I could no longer be alone. We had to sell out house and
build one more accessible. I finally had to quit work in the winter of 1998.
This was very frustrating for me as the only thing to keep me from going was the
cold. There was no way I could get into the van without seizing up.
I stared non-invasive ventilation in June 1999 and a
tracheotomy in Jan 2002. At this point in my life I am totally dependent on
others for my ADL. Miraculously, I can still eat a normal textured diet and
drink all I want using a straw. My speech is limited to short periods of time
and I rely on lip reading most of the time.
TRACH
The decision to change from non invasive to invasive
mechanical ventilation was based upon several factors:
1-A positive experience with non invasive ventilation procedures. This was made
possible by the education offered by the pulmonary clinic at the Ottawa Rehab
center.
2-There was also the realization that there are several advantages to a
tracheotomy and these are that it is a more efficient and safer system of
mechanical ventilation.
3-Having a supportive Dr. who makes home visits and is willing to do
staff training. 4-the provincial ventilator pool 5-a good family environment
I am surprised how quickly I adapted to the tracheotomy. I do not experience
anxiety and in fact do not feel the device when it is inflated or deflated.
There is an annoying gag response when suctioning. The tracheotomy tube is
changed every 3 months. This procedure is done quick and painlessly at home by
one of my nurses. The only negative experience I have had is when a care
provider is unable to cope with the demands of the mechanical ventilator.
SUPPORT
The support of a small group of family and friends is
necessary to augment what could be a rather clinical existence. I can
participate in the things I enjoy because of them. When there is an advocacy or
quality of life issue they are there: Judy Lavender, Deborah Lavender, Nancy
Brady, Mike Burson, Malcolm Macintosh and the ALS
Society of Ontario. It doesn’t hurt to have a few zany companions.
“Criticism is prejudice made plausible.” H. L. Mencken
MGM
© ALS Independence 2003-10