It's been about six months since I gave a Patrick update and probably long over due. I know friends and family are interested in how he's managing the disease and his status. ALS is a journey of loss and I'm constantly amazed at how Patrick faces the ALS challenges. It's not to say he's happy about it, no, but he rarely complains.
December marks a year since the diagnosis, and it's certainly been a year of change. I always wondered why people mark dates of sorrow. I've never done this in the past, but sadly I do now mark December, 2012 as the month we got the ALS diagnosis. So, I can't say why we do it, but we do remember anniversaries both good and bad. Last year, you probably wouldn't have even guessed there was anything amiss with Patrick just by seeing him, but time in ALS is not a friend and there has been progression over the past year.
Walking, Tremors and Balance
Probably the greatest change over the past six months is in walking. He continues to walk, but with care, concentration and the constant concern of falling. Falling is a problem for ALS patients, either while walking or transferring from one thing to another. We've been lucky (I'm knocking on wood right now) in the past few months because although we've had some very close calls (all being directed to soft surfaces), there have been no falls that required a trip to the ER. Yep, we try to guide the falls to the nearest chair, bed, couch etc.
I wish I understood and could explain the difficulties of walking - I'll I can say is that sometimes his legs don't do what he wants. I know this because he talks to them. Just so you don't think he's crazy they don't talk back, but generally they do start moving albeit slowly. Generally, once he gets going, he's ok, but the initial starting to stand and taking the first step is difficult.
Over the past few months he has developed tremors sporadically in his legs. He is unable to stop the tremors and they make standing difficult. Again, he speaks to them and eventually they stop with the shakes, but its disconcerting both for him and me. In addition to the tremors, his balance is off, so turning or pivoting is tough and generally he needs something to hold on to move in these directions.
Walkers, Scooters and Wheelchairs
It was a difficult decision for Patrick to start using equipment to help him move around, but he does use a walker at home and an electric scooter when we are out. The ALS Association lent both of these items to us from their loan closet and they've been quite helpful. The scooter can be taken apart and put in the back of our Ford Explorer which is handy - as I couldn't lift the entire thing. So, I've become pretty efficient at taking it apart and putting it back together.
The next big change in the upcoming months is a power wheelchair and van to accommodate it. This is a hard decision but we have to stay ahead of the game because the ordering process takes time from order to delivery. Power wheelchairs are custom made for the patient and run upwards of $25,000 - yeah, they are also expensive.
Adapting to Change
With the progression in ALS, there are constant changes taking place. Patrick's hands continue to be his weakest area and simple tasks are more challenging. Fortunately, he continues to be able to type on the computer and feed himself. We have adaptive silverware that makes eating easier and straws are quite handy. I'm sure I get looks at restaurants when I cut his food for him or when he drinks his coffee or beer from a straw. Honestly, two years ago if I'd have seen a woman cutting her husband's food, I wouldn't have understood and likely thought it odd. But, ALS is a painful teacher and I understand now more profoundly not to judge others quickly. Anyway, if you see someone cutting their spouse's food, they may not be an enabler, instead they may just be a caregiver adapting to change as it comes and taking care of their loved one.
Clinics, Doctors and Physical Therapists
We go to the ALS Clinic on a quarterly basis. The clinic is multidisciplinary providing the patient with a variety of specialists for managing the progression of the disease. These specialists include a neurologist, physical therapist, respiratory specialist, speech therapist, dietician and social worker. The appointments last about three hours and allow us to see everyone without the hassle of referrals and follow-up appointments.
Initially, having quarterly appointments was shocking to me, why wouldn't they see him more often with such a serious disease. But, truthfully although the clinic provides a valuable service to patients, there really is no need to be seen more than quarterly. Since the clinic manages symptoms and progression and doesn't offer a treatment, three months is a workable time frame between appointments.
Yes, I have a very mixed view of doctors because of this experience. As a child, I believed that doctor's could treat and cure any disease. In reality, they know very little about ALS and there is no "treatment". Currently, there is only one drug on the market that has shown to slow the progression of the disease by 10% (3 additional months), Rilutek. Patrick has been on this drug since his initial diagnosis in December, 2012.
The past couple months Patrick has been seeing a physical therapist, Matt, for an old injury prior to his ALS diagnosis. This is my first experience with physical therapy and it is a bright spot for Patrick because it's broadened his range of motion on his right side. There are limits to what physical therapy can do, but it certainly has proven to improve the area that was injured.
The Functional Rating Scale - Disease Progression
At each clinic appointment you meet with the various specialists. They spend their time mitigating symptoms, testing to determine progression, evaluating respiratory function, prescribing medications for spacisity, muscle cramping and other issues, and order medical devices as needed. The test for progression is extremely unscientific, it's a list of 12 questions with points assigned. These questions are asked at each appointment, a score is then determined and placed on a progression chart. Here is a link to the questions on the ALS Functional Rating Scale.
The test is very unscientific and many of these questions are quite subjective. I know for ALS patients and caregivers this scale can be a tremendous source of stress, I see it in Patrick on occasion. I'm not sure how I'd feel about having my physical decline put on a scale, but I guess at this point it is the only way they can measure the disease. I don't know much about cancer, but I guess they must measure tumors to determine their size changes, so perhaps this is similar.
ALS was first documented back in 1874 by French neurologist, Jean-Marie Charcot (http://dev.nsta.org/evwebs/2150/history.htm), it is truly sad that they still know so little about the disease. Another ALS patient jokingly said if ALS caused erectile dysfunction it would have been cured years ago. Not sure if this is true, but it does make you wonder.
The physical changes over the past six months have imposed their challenges for Patrick, but he continues to maintain a positive outlook each day.
I hope whatever life hands you that you find grace and happiness in the day!
