Every 2-3 months we visit the ALS Clinic at McMaster Hospital in Hamilton to check in and see how things are progressing.
When we visit the clinic the general drill is to meet with the members of the team and check on progression, state of mind(no they can't fix my past problems!), resources needed, education that sort of thing. It's always with mixed emotions, when we have the appointment, as you know that you are not going for any wonder drug or to be cured. It's about monitoring and assisting the patient through the journey. With that said, the team is a dedicated group of individuals who's key focus in on the patient and family and whose mandate is to do whatever they can to assist in this journey and also work tirelessly to find a cure for ALS.
When we visit, we generally focus on 5 areas. Lower body(legs), upper body(arms,hands), voice, swallowing and breathing. We, Susan and I, generally meet with Dr. John Turnbull first, review our last visit, do a head to toe check in and some general health updates. Then on to other members of the team; Respirologist for breathing/swallowing, OT/Speech for body and voice, Social Worker(make sure I'm keeping it "real"!) and ALS Society rep. We are usually there for a 2-3 hours and are both generally exhausted when we leave!
So that brings us to our visit last Friday and where we are today. Where to start, oh me oh my! Well the overall visit was positive, which we will take, considering as I said, you aren't going there to be cured! My progression since my April visit hasn't been too bad. In those areas that have progressed we weren't surprised and it more or less confirmed what we knew and had been living.
So I figured I would briefly describe those 5 areas and where I'm at. That's probably easiest based on my thinking!
Lower body-my legs remain relatively strong. Not like running or ride your bike strong, but strong enough I'm still walking, can still bend down and get up. They are wobbly at times, I look for railings around stairs, walk "deliberate" to ensure I'm picking up my feet, watch for carpets and rugs and have put the flip flops away as I'm one flip or flop from a tumble! It's funny and weird at the same time as your brain will want to do one thing but the legs won't necessarily come along for the ride.
Upper body-my arms and hands are probably the worst. My arm strength is minimal and my fine motor skills with my hands are challenging. However, it's amazing how you adapt and change how you approach things and move on from there. My hands and arm challenges, just to name a few: opening lids, water bottle caps(Nestle may be saving the world with less plastic but I'll die of thirst trying to get that cap off!), buttons on pants(no I haven't moved to drawstrings and stretchy pants...yet!), can't pick Sarah up, cutting food, opening my beloved Diet Pepsi cans, getting out of bed, door knobs...you get the idea. Again, you do adapt, but imagine having to think everytime when you grab the milk jug from the fridge, move the frying pan off the stove or grab something from the cupboard. Every time I reach for something now I think about whether I will be able to support the item and make it to it's destination. Good thing I'm retired cause I'm doing a lot of thinking!
Swallowing and Breathing-both are still pretty good, some adjustments here and there but not bad. Swallowing, I'm cognizant of it, takes me a little longer to eat but no real problems. Drinking, I've had to adjust. You know the old saying "it went down the wrong way", well that happens daily if I'm not careful so shooters and beer shots have been eliminated! And just a word of warning if you are with me and choose to make a joke while I'm drinking you better bring a change of clothes!
Breathing has been fine, out of breath quicker at times, but all in all not bad. On each visit to McMaster, the one test I get a little anxiety about is the "blow test". It measures your flow of air and your push of air. Since we are among friends here I can say that I've watched those numbers closely, a respirator hook up is not something that I want any part of. I say that with complete ignorance knowing very little about it. I may change my mind, when and if the time comes, but today I don't want to deal with it.
And last but not least, is my voice. It is weakening and my clarity, at times, becomes, as I can best describe it, "nasally" and garbled. Those that I see everyday are adapting, and most times, can still understand me. Those who I don't see as often may notice changes. It has become tougher, on some days, to go to places where I need to speak, or be on the phone, as, believe or not, I find my anxiety heightened and it is tough to get the words out. So I plough forward best I can and cherish the days when it is smooth.
Fatigue is a constant factor that I battle and I try and find that balance of not doing too much but still getting things done. Needless to say I don't do well with idling!
The only other thing I can think of is that this damn disease wreaks havoc on one's emotions! One of the side effects, per say, that is heightened, is your emotions and dealing with different situations. So my problem is, mostly, laughing! Susan loves it, cause put me in any situation these days and I'll probably laugh. If I'm mad, angry or frustrated about something, Susan will try and make me laugh(not cause she is funny!). Kids are melting down or mad and I laugh, get me laughing I may not stop! On the other side of the coin, and if I was soft before, any "nice" story on TV or in a magazine will set me off the other way, and I''ll cry. Win a challenge on the Food Network I'm crying for ya!
Honestly, it has been frustrating, at times. The doctor said he has drugs to help with that, but we need laughter and crying in our lives right now, so I'm drug free!
What's the future hold, I'm doing some physio therapy these days to keep the muscles moving. Nothing is guaranteed but need to keep the body and mind moving as long as possible. There is some potential trials and so on in the future so we are keeping ourselves apprised of that.
And that is the health update!
We've had a great summer! We took the opportunity to get away and Susan's work was great with her using holiday time this summer. Susan and I had an extended long weekend together in Banff in June, Susan's first trip west.
Then our annual pilgrimage to PEI and long weekend cottage visits to both Wasaga Beach and Minden. We are now, like all, getting settled in for the new fall routines. Ben's in school full time so Sarah will be miss having her big brother around. Lots of activities underway with skating and swimming for Sarah and hockey and swimming for Ben, so good thing I'm retired as I get to put my organizational skills to work keeping everyone straight!
Thanks to all for stopping in and your support and love along the way!
