I'm My Own Case Manager

Since receiving the news on Wednesday and Thursday, I have been mainly resting and processing. After talking things over with my Peace Corps post-service case manager on Friday, I have a plan and a list for the next steps, including filing for insurance and disability programs, which means getting M.D. statements, ordering medical records, and being my own medical case manager.

A friend said recently, "It's too bad you still have all of your marbles because otherwise someone would be appointed to do that for you".  Actually, I am grateful to be working on this stuff since I am a control freak and lack trust that someone else would get the job done. Besides that, it's a distraction and something to do.  And dealing with the medical records department at Maine Medical Center is a great test of patience, so I get to stay busy and try to be a better person all at once. 

So--today I will start researching programs, and on Monday will be sending emails and making phone calls.

Decision

This week was largely spent driving (or being driven) back and forth to Boston to see two neurosurgeons on two consecutive days . The second surgeon told me that some of my symptoms may be related to degenerative disk disease, which I appear to have.  Clearly, the DDD doesn't explain all of the symptoms, such as the fatigue and the muscle fasciculations (spasms) that are now almost constant in my left leg, but it might be contributing to the weakness of my left leg, and  my fingers.

The neurosurgeon is recommending disk surgery, which I am considering. At first, I felt very negative about surgery, but I was coming from a "should" position. I was thinking in terms that I shouldn't have to have this complication along with the ALS diagnosis, but  that that sort of thinking isn't very productive and I have to move away from the "shoulds" and to accept what is. And "what is" is that if I don't get this surgery, my symptoms will worsen. If I get the surgery, they could worsen as well, but then I will never know if it might have helped. So if Peace Corps agrees to pay for the surgery I will most likely go for it. 

One positive is it could be done here in Maine. The surgeon said that he can refer me to a couple of neurosurgeons at Maine Medical Center, which would be preferable to going back to Boston. He suggested that it will probably involve a 3-day hospital stay and then some time in a skilled nursing facility or rehab hospital. 

Today, I will speak with my Peace Corps medical case manager, and make sure that my medical records from Maine Medical and Tufts are in order. And I will also take a break--all that going back and forth, even when I am not driving and am getting pushed around in a wheelchair is exhausting!  

Mobility, Falls, and Such

ALS looks different on everyone. For example, for some people, ALS begins in the head region and affects speech from the beginning: this is known as Bulbar ALS. I seem to have the Limbic type of ALS, which begins in the legs and feet..Normally I feel grateful for that, except for when I fall, which I managed to do 15 minutes ago when I was standing up and untangling a power cord. Suddenly my left leg gave out, as it does sometimes, and I crashed to the floor. Thankfully I was on a rug that broke the fall a little, and a wood floor is definitely softer than a concrete one, so no severe harm was done beyond the sick feeling I always get after a fall.  Sometimes a fall can wipe me out for a day or more; they are  horrible, and I now understand why they are such a big deal for older people; they do real damage.

I am transitioning from a walker to a wheelchair. I am still using the walker in the house, but I don't anticipate that to last very long. It is becoming more difficult and my left leg is getting weaker by the day. It tends to buckle underneath me, and that is what happened a few minutes ago. Outside, I am using a wheelchair almost exclusively; the ground and even the sidewalks are too uneven for me to handle.

The main problem with using a wheelchair in the house will be getting into the bathroom. The door is too narrow, and even if we were to  widen it, the toilet is in a very awkward spot. For as long as I can take a step or two, I may have to wheel the chair up to the door, and then try to navigate the bathroom with a walker. I have no idea how this will work once I can no longer walk. I try to stay in the moment and not get too far ahead of myself, but this stuff does require some planning, and I am not seeing a ready solution to this bathroom problem.

Adaptive equipment is quite expensive, especially since I have had to buy and discard several items over the last few months. It will soon be time to make a trip to the Lions Club's assisted device closet to leave them for others in need. Thankfully, I have been given some hand-me-downs from friends, which has helped to mitigate the costs.

Tomorrow I go back to Boston to see a neurosurgeon. The ALS specialist found some changes in my lower spine that may or may not be related to my symptoms and they want to check it out. I'll be going with my Boston team: my brother and driver, Charlie Hague, and my dear lifelong friend, Vicki Verrill Smart, both of them angels.

This is My Life Now

My name is Grace Marian, and I learned this week for the second time that I most likely have ALS. This information came from an ALS Specialist, Dr. Bali, at Tufts University Medical Center in Boston. The first time I heard those words was on January 20 from my neurologist, Dr. Belden, in Portland, Maine.

I say "most likely" because ALS--Amyotrophic Lateral Sclerosis, also commonly called Lou Gehrig's Disease--is notoriously hard to diagnose. The process of diagnosis, or at least what I have experienced, is that the specialists are mainly ruling out other explanations for why I am progressively losing my ability to walk, get up from a chair, and why I am exhausted after doing what used to be small tasks like taking a shower and getting dressed.

ALS is a disease I will probably die from if something else doesn't get me first. Most people live 3-5 years after diagnosis. There is no cure, and no viable treatment unless you count the medication Riluzole which appears to have no value beyond keeping patients alive for a couple of months longer and enriching the pharmaceutical company. I also just read of a new medication that was approved by the FDA recently, which according to Forbes is extremely expensive--$145,000 per year (four times what it costs in Japan), doesn't extend life, but slows down the symptoms. I don't think I will start a GoFundMe campaign for it soon.

ALS is a disease of the motor neurons--the nerves that function as a conduit between the brain and spinal column and the voluntary muscles. Normally, if you need to walk somewhere, your brain sends a message to your legs and feet to get moving. With ALS, the motor neurons die off and the muscles become flaccid and useless because they aren't getting the message to move.

When I first got symptoms in September-October, 2016, I was living in Botswana, a country in Southern Africa, and volunteering with the Peace Corps to help them reduce HIV transmission. At the end of our 12-week training period, I fell twice in three days while walking on the road between my homestay and the training facility. At first, I made excuses--the roads were rocky, maybe it was the change in diet, or whatever. I was much more focussed on becoming sworn in as a Peace Corps volunteer and going to my new worksite in Serowe.

When I moved to Serowe, the falls continued, and it was clear that they weren't typical falls. In the past, when I tripped, I  could  usually either catch myself or have time to break the fall. With these falls, I came down hard on rock or hard asphalt.  I broke my glasses with one fall, and had black eyes after another. I finally called the Peace Corps Medical Office.They asked me to go to Gaborone, the national capitol, for an evaluation. The trip to Gabs extended to two weeks as the Peace Corps sent me to several specialists, none of whom were able to figure out what was happening. Meanwhile, my walking got worse, and I began to use a cane. My balance was way off, and the fear of falling didn't help either.

One doctor thought that my problem could be related to a side-effect from Malarone, an antimalarial drug I was taking. I stopped the Malarone, and got marginally better for a few days. I lobbied the Peace Corps to clear me to return to service, and they did, but I may have been a victim of wishful or willful thinking, because I stopped improving shortly afterward, and I fell some more, including a face plant on a concrete floor in front of 42 Junior Secondary students.

I returned to Gaborone, and was informed that the Peace Corps was sending me back to the States for a medical evacuation and further evaluation on December 5, 2016.

Although I had been living in Oregon for the past 21 years, I went to Maine where my brother and sister-in-law live in our hometown, Buxton. I assumed that I would find medical care and they would fix me up and I could return to Botswana in 45 days.

I was wrong. The med-evac took longer than I expected, and on January 16, I was medically separated from the Peace Corps. On January 20, I was told by a neurologist that I probably have ALS and would need a second opinion.

Well, I got the second opinion last week, and the verdict is that I probably have ALS, but that the ALS specialist wants me to see a neurosurgeon about some changes in my lower spine. So, we're heading back to Boston next Wednesday to see what's up with that.

It all sounds pretty gloomy, but there are some very positive aspects to this scenario. First, my brother, Allan Hague and sister-in-law, Linda Hague have been extremely kind and generous by opening their home to me and providing assistance when needed. Second, the support and concern of relatives friends in Maine, Oregon, Washington, Botswana, and many other places. As cliched as it looks, I do feel truly blessed. Because of that love and support, I know that my situation will be the best under the circumstances.