Promote More Accessibility

I implore you to help promote more accessibility! In today’s world where there are more and more of us with mobility limitations, a lot is being done to improve matters but we still have a long way to go! Travelling with a disability is already challenging enough even when all the necessary accommodations are in place. Well-intentioned screw-ups just make things even more frustrating.

Can you spot what is wrong with the picture above? A well placed handicap parking space, you might say! It happens to be in our neighbourhood in front of the Dairy Queen.

Okay! I’ll admit it, I may have a more personal motive here but why go to the trouble of putting the parking spot when there is no place to mount the curb. In fact, in this entire strip mall, there is only a single access for walkers, scooters or wheelchairs and it is at the far end of the parking lot furthest from the road. I have to travel the entire length of the mall (and back) to get my Blizzard! 😮

The truth is that so many of these things are planned and implemented by able-bodied people who have no appreciation for what is needed by the mobility impaired. And even more sadly, nothing is likely to change unless we speak up to the powers that be. They believe that they are doing right by us. I heard on the news recently that with a population of 37 million, Canada has almost 6 million with some form of physical limitation. We have to do better. Below are a couple more examples of boneheadedness:

promote more accessibility If we just sit back and say nothing, things will not improve. In my case, I have contacted the local councillor to insist that this be rectified. I highly urge you to do the same every time you come across something that does not function as intended.

Fortunately, there are now organisations that can help you with trip planning and finding accessible venues and trips.

Doppler Test for PMA? Sounds Good!

Doppler Test for PMA

Back in November of 2019, my neurologist ordered a Doppler Test of my legs to try to discover why my legs and feet were consistently cold, even in the middle of summer, when the rest of my body is sweltering in the heat. He opined that this was NOT a normal result of PMA or ALS! A quick perusal of PLM would have soon disavowed him of this conclusion.  However, I decided that I would go ahead with the test anyway. Perhaps there would be some indications of how to overcome the problem as a result.

What is a Doppler Test

A Doppler test uses ultrasonography (ultrasound) to measure blood pressure and flow rates in veins and arteries in various parts of the body to highlight circulation problems. It is invaluable, for instance, in indicating the presence and position of blood clots. It is also used as a diagnostic tool when Raynaud’s Syndrome is suspected. Raynaud’s is a rare affliction where parts of the body (usually the extremities, fingers and toes) become susceptible to even mild amounts of cold and can lead to loss of them in a fashion similar to frostbite.

Why a Doppler Test for PMA?

If we could have a dollar for every time that a supposedly knowledgeable medical professional states categorically: “That is NOT part of ALS/MND/PMA!”, we would have enough for research to conquer this disease! I have heard it too many times. A quick search on PatientsLikeMe revealed that there are almost 300 pALS who have reported it as a symptom. It seems likely that the problem occurs when muscle activity declines to the point where the lack of movement no longer aids in moving the blood back to the heart leading to pooling, edema and discoloration. In many, if not most situations, the problem can be alleviated by raising the affected limb(s) above the level of one’s heart so as to ameliorate the blood flow. Where this is not possible,  compression socks and applying compression and/or heat can improve the situation. I went into this test not expecting much in the way of helpful results!

Hospital Visits Amidst Covid 19

I do not like hospital visits at the best of times, and these are definitely NOT the best of times. The entrance to the Civic Hospital in Ottawa more closely resembled a MASH unit than a regular hospital.  Obtaining ingress was like entering Fort Knox and after answering the requisite Covid questions, I was informed that my carer (my wife) could NOT accompany me inside. I explained, in vain, that I would need her assistance in dressing and undressing, in particular aiding with my compression socks. We called up to the Imaging department and were told that there would be someone there to assist me (they lied!)

The Test Left Me Cold!

With much trepidation, I made my way up to the appropriate department where there were several patients waiting but no sign of a desk clerk or indeed any medical staff. Eventually, someone appeared, took my details and ask me to take a seat (I was in a wheelchair). After another extended wait, a technician called my name and showed me into the examination room. He offered no help to get me undressed and into the hospital gown nor to transfer to the examination gurney! I am lucky that I still have upper body function but even so, struggled to get this done. I won’t describe in detail the first part of the test except to say that he started with jelly on my belly and then moved on to several locations on my legs. This first phase took about 15 minutes.

The young man conducting the test was obviously not used to testing patients with limited function because he kept asking me to reposition my legs. I told him that if he needed them moved, he would have to do it himself.

The technician then explained that he would be doing a test involving placing my feet into freezing water to cool them and then warming them with hot towels to measure the difference in pressure and flow and also recording the ‘recovery time’.  He was clearly apprehensive about how I might manage to get my feet into the basin with the ice. Fortunately, by dangling my useless appendages over the edge of the bed, he was able to lower the bed until my feet descended into the icy liquid. Then followed an awkward couple of minutes where he stared into my face obviously expecting a reaction he did not get. He kept asking me: “Are you doing OK?” I could not figure out why! He seemed frustrated when he finally raised the bed and put sensors on both my big toes. He seemed not to be getting the readings he expected. He then warmed my feet with heated towels and replaced the sensors on my toes.

Looking flummoxed, he said he needed to repeat the test and said that this time I should tell him when I started to feel discomfort. The problem was that I never did. I could have sat there all day with my feet in the ice water. For some reason, I seem to have lost a lot of sensation in my feet and toes. After I explained this, he didn’t allow me to leave my feet in as long the second time. He ended the session by saying: “That was challenging!” He then departed and left me alone to struggle with dressing.

A Sound Conclusion

As previously stated, I don’t really expect anything concrete to come from this test. I shall just have to suck it up and continue with my own remedies.

P.S.  The fastest response time EVER: Just 24 hours after the test, the neurologist’s assistant called to say that everything on the test came back ‘normal’ 🧐