,, I’m talking about legal drugs here… so if you looking for anything you can be arrested for and found this site by accident.. you’re in the wrong place!
This is a bit of an impromptu posting as I had just read a post on the AAC board where someone had asked if anyone know of the effects of Baclofen on the eyes as their client/family member used eye gaze as their input method.
A few years back I was undertaking a trip for my brothers wedding which meant that between leaving home and arriving at the next accessible toilet (at hotel) there were 4-5 hours and I had been having some difficulties with my bladder not emptying properly.
I had discussed muscle relaxants with my Neuro at an appointment I had set up just before the wedding, but she had informed me that it can intially make the muscles very floppy so I could end up with the opposite problem re bladder and it may affect my ability to stand myself up for transfers as my leg muscles would be floppier too. At that time my arms weren’t affected so the effects of it on my arms, signing ability and typing skills were never mentioned. So consequently this was not something I took into consideration.
As it was really close to wedding, I had only just managed to get a cancellation appointment a few week before the wedding, I didn’t want to risk it, I already had my suit which was cream colour so I really didn’t want to be peeing in large volumes in public when I had the large time of 4-5 hours with no access to a toilet (during ceremony and the travelling up to reception which was some distance away.
A nurse came to show me how to use an intermittant cathetar so I could ‘manually’ empty the bladder fully before leaving home and as an extra precaution I got a pack of Tena pants just in case I couldn’t go that long without needing a wee again! I managed to get through it, I had one cup of tea at 6am when I woke up then didn’t have any more drinks until we reached the hotel around 2pm.
Anyway back to the point… I hadn’t thought of the effects on communication as many of the side effects included dysarthria (inability to co-ordinate muscles used in speech), tremor, dystonia or increased ‘floppiness’ of muscles (not sure of correct medical term on that one), it also listed ‘ataxia’ as a side effect, so if you already have ataxia in the first place is that going to make it doubly as bad as it was?
Although very few people would end up with nearly all of these side effects, there were enough of them in there to guarantee it may have some affect on your ability to communicate if you relied on typing and/or signing and even make ‘difficult’ speech more difficult to understand.
As my neuro had pointed out the other things though they were quite enough to put me off at the time, the risk of ‘having an accident’ in public and legs been too floppy which would have meant I would have struggled to do things like get myself out of bed, transfer from chair to toilet etc so I’m really glad now I made the decision to work around and adapt to the increased stiffness in back and legs.
I found heat helps and found my electric blanket to be a great help through the winter months as the heat from it keeps my back and leg muscles relaxed in the cold so I at least get a decent nights sleep and if I wake up early in pain, I put blanket back on for a while (I never sleep with it left on, even on over-night setting) and it soon eases off with combination of painkillers and heat.
Obviously by time I got up and been out in cold to walk Inca (in winter) I’m starting to stiffen back up again, but I have learnt to use this to my advantage. Although it involves a much more lengthy procedure of ‘defrosting’ when its really cold, its been worth it to maintain as much function as possible in arms and legs.
My friend bought me this Rainfall Foot Spa one year and its great through winter when its freezing out, I fill it with hot water and put bubbles on then soak my hands in it (as they go really stiff and blue in winter then its really painful to type). This helps relax hands, warms them up again and I can use them as typing is major communication method for me with also using a minicom textphone as well as computer and Lightwriter.
I then put on some thermoskin gloves to help keep the heat in hands and found those ‘jumbo joke pens’ make a great pointing device due to their size and weight they are easy to grip even with gloves on and the weight of them helps to reduce tremor and/involuntary twitches from ataxia. Just remove the refill to use as pointer so you don’t mark keys on computer. (Great with my textphone which has no word prediction or keyguard etc available to help)
(They are currently selling these in UK pound shops at moment, but they are around £4.99 online)
Once I got hands reheated I place it on floor so can warm my feet up again which are usually still blue despite two pairs of socks and furry ‘Ugg’ boots! I find wearing splints inside the boots helps too as it stop calf muscles tightening as much again after been out in cold.
I have also found Interferential TENS machine a great help for massage on lower back and calfs. These cost a bit more than the regular tens machines that you can get from local chemist for about £20. I doubt they will have the same effect as they are usually for pain only. For more detail of Interferential TENS and how it works check out this page:
After my ‘defrosting’ routine I usually manage to get a bit of typing done and some lunch, it probably would be easier to just take a pill but whether you feel its worth the risk to lose the function you have worked so hard to keep is down to the individual.
Personally I rather keep my independence and once the pain/stiffness is under control I can still transfer myself independently, use a walker/crutches (for limited distance) and enjoy Wii Fit for short periods. 🙂