New levels of scary, an ALS clinic appointment and… stuff

I’m so tired.
I can’t believe this is happening.
Those have been the two main thoughts in my head since… well:

November 22: It was a normal evening. A nurse was here from 9pm to 9:45pm to help me go to bed. I did some meditation and stretching, and turned off the light just after 10pm. I woke up around 11pm and my first thought was “I’m scared. I want my mom.” My second thought was “I have to pee.” I was on my back, knees bent and tried to decide whether I wanted to roll to the right to grab my phone and call my mom or to the left to go to the toilet chair. That’s when both my legs went into a spastic extension and started cramping and shaking uncontrollably. In other words, I wasn’t going anywhere. I literally couldn’t bend my legs or roll to the side or… do anything except push my emergency call button. The call center responded and I had them call my parents. So then I knew my parents were on the way, but I also knew it would take them 20 to 30 minutes to get to me. I kept telling myself “it’s just your legs, it’s not life threatening, just breathe and relax”. I managed to relax a little and roll over to my right side. Unfortunately what also relaxed was my pelvic floor and I peed all over the bed. Oh well. The spastic cramping in my legs continued and was really uncomfortable and it dawned on me that I was in for some major soreness the following days (and I was BIG time). Eventually my parents got there and I had a feeling that weight bearing would help so my parents managed to stand me up on my spastic cramping legs and it did help. As long as I was standing on my legs and moving. When I stopped moving even for a minute the spastic cramping would start again. It was around midnight at that point and my favorite Sativex side effect was kicking in: tiredness. I was exhausted and didn’t know what to do or how much more of this I could handle…so we called an ambulance and I was taken to the hospital. The doctor in the ER started by saying that he didn’t have a lot of experience with ALS and didn’t really know what to do. I’ve said in a previous blog post that I like it when doctors are honest. I take that back. I want doctors to be confident and know their stuff… or fake it. He disappeared for about an hour to figure out what to do. That whole time my dad was basically my physical therapist helping me move my legs. The doctor came back with a pill (Carbamazepin) that might help and offered to keep me there overnight. I told him I needed help literally every few minutes and that wouldn’t be fair to the other patients and also would be too much for the nurses. He said “no problem, that’s what we’re here for”. Clearly without hearing a nurse’s opinion… A word about nurses: I have a lot of respect and admiration and gratitude for their hard work and they don’t get paid enough. Having said that, the two nurses “welcoming” me to the neurological ward were assholes. I felt like I was disrupting their break. They weren’t busy, they just seemed annoyed at having to deal with me: they told me to take the pill, be patient and go to sleep. I tried to explain that I couldn’t because I was in pain, but they weren’t impressed. Eventually one of them took me to a single room (bumping into walls and doors with the bed to show her annoyance with me, she couldn’t have been that clumsy) where my parents could stay with me. So we spent the rest of the night there, my parents uncomfortably on two chairs and helping me every five minutes to move my legs around. And the pill didn’t help one bit (but at least I didn’t have side effects). Needless to say we left the next day.

I went back to my parents’ place after that because… Did I ever mention that my apartment was on the 4th floor, no elevator? Well, it was and there was no way I could get up there. So I stayed with my parents thinking I would be OK to go home after a few days, maybe a week or two.

“Luckily” I had an appointment at the ALS clinic two days later. And for the first time I was looking forward to it because I thought surely they could help me. I’m so naive. I don’t want to go into detail about that appointment, but basically they couldn’t really deal with the spasticity either and suggested a few different types of medication and told me I had to figure out for myself what worked for me and what dose I needed. Kinda felt like a science project. The next two weeks are a bit of a blur because my medication science project wasn’t going well and the ALS clinic didn’t return my phone calls. When I finally got a hold of the doctor she told me that we may not be able to control my spasticity with medication and I should “get over myself and do physical therapy everyday”. So I tried to get over myself and asked the ALS clinic to find me a physical therapist who would come to my home (they have a program called “Ambulanzpartner”, an extensive network of practitioners/therapists). Again, I’m so naive thinking that that place would ever be helpful. I’m still waiting for them to suggest someone.
Luckily, for real, I have a new general practitioner who is amazing, fantastic and then some. She found out for me that “Baclofen” was the medication of choice for spasticity, but I needed to take at least 50mg to have the desired effect. So I did and it worked. Eventually. Meaning I could sleep for maybe 30 minutes to one hour at a time. Which was a big improvement. This doctor also found me a wonderful physical therapist. She and her collegue are coming to my house 4 times a week.

December 11: that was the first promising night, I slept for 1 hour several times until I woke up at 4am with a sore throat and stuffy nose. Yup, I got a cold and it was awful. My breathing and swallowing are a little compromised because of the ALS but it’s usually OK. With a cold on top of it, it was really not OK. I had difficulty breathing all day and I was scared of swallowing because I thought I would choke. Around bedtime my difficulty breathing got so bad that we called an ambulance again and I was taken to the hospital (a different hospital!). After two doctors at the emergency room (internal medicine and neurology) assured me that my oxygen saturation was at 100% and explained that I wouldn’t stop breathing if I fell asleep, it dawned on me… I was having a panic attack. Interstingly this realization didn’t make things better. The next thing I was worried about was that they might sedate me and I still wanted to stay awake to make sure I kept breathing… just in case! Anyway I wasn’t about to stay at a hospital again and they were honest enough to say that I was probably in better hands with my parents. So we went back home and eventually extreme tiredness got the better of me and I slept for 2 hours!

Having a cold on top of ALS really sucked. For one thing I can’t blow my nose because I can’t lift my hands up that high. And having someone else hold the tissue for me to blow my nose made me feel like a little kid. The other thing was fear. I was too scared to be in a room by myself because if I was lying down I couldn’t get up by myself and if I had to sneeze or cough that was really scary. I think I realized around that time that I wasn’t going back to my apartment. And it was surprisingly OK. I had two good cries about it but when we went to pack up my stuff in mid January I was totally fine. It made sense as a next step.

The worst of the cold was over after two weeks but I had a persistent cough and a sore spot in my throat stay with me until mid February. Which sucked because it made talking so difficult. I never realized how much I like to talk until talking got so hard that I had to consider if what I wanted to say was worth the effort. I still have to think about that, so lots of witty comments and observations are staying in my head. Sad. And I’m scared of what could be in the future for me with this disease.

Sleep is still a big problem. I wake up a lot from discomfort related to spasticity. And by “a lot” I mean if I get 1/1.5 hours of uniterrupted sleep, I consider myself lucky. I’ve tried all kinds of different sleeping medications but so far nothing has worked. I will keep looking because there has to be a solution for this.

There’s more to tell (obviously) but this blog post is so overdue and so long (are you even still reading?)… I’m going to leave it at that.

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2 Comments

  1. We can never imagine what you’re going through my dear but we’re all here with you and for you. Stay as strong as you can. 🙂

    Reply
  2. Anastasia Platt

     /  May 7, 2015

    I love you my darling! It males me so sad to think of all this happening. You’re amazing and I’m with you in my thoughts.

    We are on a road trip from Chicago down to Charleston sc. Savannah ga. Back up to Asheville nc. Then to Louisville ky. And now on our way home to Chicago again. I’m picturing you in the goddess mobile with all the windows open and the radio blasting. I love you.

    Reply

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