Monthly Archives: May 2020

Travelling with PMA

Accessibility in Milan

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Accessibility in Milan

Accessibility in Milan did not seem to be a problem when we researched on the Internet ahead of time. Travelling with PMA/ALS can be a challenge at the best of times but as this disease progresses, the challenges become ever greater. We recently took a weekend trip from Lausanne, Switzerland to Milan, Italy and I had no idea what to expect!

Firstly, we booked a self-pronounced ‘accessible’ hotel and even called in advance to ensure that they were set up for my wheelchair. Next, we booked our train tickets, also ensuring that they could accommodate said chair. Finally, we checked on the web for places and things to see and do that would be accessible. There were a couple of websites dedicated to accessibility in Milan. By all indications, we were well-prepared!

Travel by Train

Accessibility in Milan

We set out very early on that Saturday morning (5:30 AM). Our first challenge that although SBB (Swiss Rail) was aware of our situation, once we boarded the train we found that the accessible carriage was attached to the 1st Class section with space for only one other passenger (caregiver). The other 3 members of our group were to be seated 3 carriages away. Fortunately, the train was not full and the conductor allowed us to stay together in unoccupied seats. For many trains in Switzerland, you must give at least an hour’s notice of your intent to travel. The problems with this are threefold as we were to discover.

  1. You must specify the exact train that you wish to use. If anything occurs that you end up on an earlier or later train, you will lose assistance at either embarkation and/or debarkation.
  2. Sometimes a train marked as accessible turns out not to be. There is small print in the app that explains that accessibility is NOT guaranteed since the railway is sometimes forced to change equipment.
  3. The accessibility telephone number is only available during weekday business hours. If you need to travel outside these hours without notice, you will be dependent on the app (see 2 above) whose accuracy is not guaranteed.

Our ‘Accessible’ Hotel

As you can well imagine, finding a reasonably priced hotel in Milan, even outside of the main tourist season is not an easy matter. To find one that is also ‘accessible’ makes it even more difficult. We settled on Hotel Manin, a well-situated, four-star hotel that had offered a reasonable family package. The hotel entrance was accessible, the rooms however not quite so much. Although there were guest elevators, they were not large enough to accommodate my much smaller than average power wheelchair! I had to travel up and down in the service elevator, which still required some fancy maneuvering to fit in.

Accessible BathroomThe room itself was really comfortable and well-appointed. The supposed accessible bathroom, however, was much less so. At least the hotel responded when I  told them that I needed something to sit on for the shower. They somewhere dug up a strange,  plastic cube, which was clearly not designed for this particular task but it did the trick. At that time, I had enough mobility left in my legs to handle the toilet but today, it would be out of the question!

Getting Around Milan

Busses were officially accessible but we did not get to test them. The hotel arranged an ‘accessible taxi’ when we needed one. It had room to fit my wheelchair in without a problem but had no means to help mount into the high seats. Again, only because I have full upper body strength was I able to hoist myself in. I can’t imagine how they might have handled a quadriplegic individual. The metro, again we didn’t try it out, has only a single line that is fully accessible. Public transit ranks a C- at best for accessibility in Milan!

Streets, Stores & Restaurants

First, the good news: Milan has obviously taken great pains (and expense) to make the city core more accessible in recent times. At most street crossings, it is apparent that work has been done, at almost all pedestrian crossing points, to remove, re-engineer or shave down curbs.

Accessible Stores

The bad news is that at almost all other places, accessibility is a joke. I would estimate that only 20% of restaurants and 10% of stores were accessible to anyone in a wheelchair.  The photo above shows a typical store or mall entrance. There is no gap in the curbstone for a wheelchair, scooter or walker. There are three steps to navigate to enter. The sidewalk itself looks better than most. Many are constructed with small cobblestones which makes for a lumpy ride. In many cases, when I went on the sidewalk for a long distance, there would be no way to get down which would mean that the entire family would have to retrace its steps.

Public Washrooms

These were a crapshoot (sic). On the whole, one would be better off by assuming that any public washroom is NOT accessible unless clearly signed as such. Local accessibility by-laws are either not in place or not enforced. In other cases, lip-service is given to accessibility with no real thought given to how it is implemented, a bit like our hotel but on a wider scale. In one establishment, I actually became trapped in a washroom and had to shout until a staff member came to help! 😮

All in all, I was very glad to have made the trip but, on aggregate, I could not say that Milan ranks as very accessible in my book.

You can check out some of our other travel adventures here 

 

Assistive Devices, PMA Update

Swimming with PMA

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Swimming with PMA

Many things, including swimming with PMA, have to be done differently when one has Motor Neuron Disease. I consider myself extremely fortunate that we have the financial wherewithal to afford the equipment that makes otherwise herculean or impossible tasks doable for those of us with physical limitations. Last year, we had a pool lift installed at a cost of around $7,500. Because we had trouble finding workmen to do the actual install, it was not up and running until late in the season and I was still able to use the handrail to enter the pool. As a result, I only used the lift a couple of times and the weather and water were both warm.

The Pool Lift

If you have PMA, PLS, ALS, or any other MND and own a pool, or are thinking about getting one this might give you some ideas of the pros and cons. Quite apart from the expense, you have to consider how well you are able to get in and out of the lift. Since I still have good upper body strength and function, this is less on an issue for me than it might be for others. However, I still have to position my power wheelchair just right to make the transition to the lift chair.

We purchased the Aqua Creek Admiral model 

swimming with pma

It was supplied and installed by a local Mobility Specialist but we needed the concrete pool deck to be prepared by drilling holes, setting anchor bolts and leveling the base plate. This was the difficult part since it was a relatively small job and few local handymen were willing to tackle it. Luckily, the company who was doing some other landscape work (making the back yard more accessible for my wheelchair), agreed to do it. The unit is pretty heavy (160lbs+) and, in our case at least, has to be removed before winterising the pool, since the winter safety cover cannot be installed with it in place.

Taking the Plunge

This year, we were able to get the pool opened up relatively early and eagerly awaited the time when we could take a dip without freezing our (insert your own word here) off. Yesterday was that day. The sun was shining and the water temperature was at 21/70 degrees. I know that to many of you this might seem on the cool side but prior to PMA, I would dive in at 18/65 degrees, so I thought that this would not be a problem!

As you can see, I was in for a somewhat rude awakening!  In the past, I would have considered the temperature just fine, since I would simply dive in and the shock would last only a couple of seconds. This time was different, being slowly lowered with no control and not able to jump off the seat until it was completely submerged was like a version of the Chinese Water Torture. Once in the water and swimming, everything was fine. Even though I have almost no function in my legs, swimming is both cooling, relaxing and a chance to exercise my legs gently. In spite of the video above, I do highly recommend it.

You can find my solution to other daily challenges here!

PMA Update

PMA Update COVID 19

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PMA Update COVID 19 Edition

Disclaimer: I am not a medical professional nor an infectious disease specialist and any views expressed here are for your consideration but should not be taken as gospel without due diligence. Besides this PMA Update COVID 19, the ALS Society has published a great deal of information about the Novel Coronavirus and MND


My Personal PMA – COVID 19 Journey


When the world-wide pandemic of Coronavirus first became wide-spread, I was in Switzerland which subsequently became one of the world’s early hotspots, likely due to its being landlocked with its population being condensed into small clusters and being a crossroads of sorts within Europe. I was in Milan in late January which would later become the European epicentre of COVID 19. In the Lausanne area, however, there were still only 2 known cases when I left Switzerland for Canada. Schools had just been closed and many adults were already starting to work from home.

As I arrived at the airport in Geneva on March 16th for my return flight, I was casually informed that my flight was to be the last scheduled flight by Air Canada. The flight was packed solid but there appeared to be no coughing or sniffles near me. When I arrived in Montreal, I discovered that all flights to Ottawa were cancelled. Air Canada magnanimously offered to re-route me through Toronto adding a further 8 hours to my journey. Fortunately, I was able to convince my wife to drive 200KM (each way) to pick me up.

Since being back in Ottawa, after undergoing the mandatory 14-day self-isolation, I have done my utmost to limit any potential exposure. Since I am over 65, have compromised lungs in addition to Progressive Muscular Atrophy, I consider myself high-risk.
In retrospect, I consider it quite likely that I already had a mild case of Coronavirus, since both my grandson and I had a mysterious illness in early February which featured mild fever and cough as well as some other odd symptoms (headache, diarrhea, etc.) Until such time as antibody testing becomes available, I have no way of knowing for sure. Therefore, I must continue under the assumption that I am still susceptible.

Are PMA patients AUTOMATICALLY  ‘High Risk’?

The answer to this is: it depends on your personal risk factors. Once again, PMA sufferers are grouped with ALS patients when discussing this aspect. I have come across opinions on both sides. Since the majority of pALS succumb to respiratory failure and the Novel Coronavirus primarily affects the lungs, it seems prudent to assume that they should be placed in the high-risk category.
On the other hand, many, if not most, PMAers will not likely experience lung issues unless they progress to full ALS. PMA, although generally slower progressing than many other Motor Neuron Diseases, is still considered fatal and thus should be seen as a co-morbidity.
Factors other than PMA itself can place us in the high-risk category:

1. Compromised Immune System
2. Living in a Retirement Residence or Nursing Home?
3. Heart or Lung Problems – hypertension, diabetes, asthma
4. Age – 60+

Do ALL Social Distancing rules apply to PMA?


It is not a coincidence that the bulk of COVID 19 cases and mortalities are in retirement facilities and long-term care. Those of us with Motor Neuron Diseases typically require physical assistance that makes social distancing impractical at best and impossible at worst.
Even those of us NOT in nursing homes or long-term care will likely need physical assistance of one sort or another. You cannot be assisted in bathing, dressing or eating from a distance of 2 metres. Feeding tubes and respirators all necessitate a ‘hands-on’ approach. It is hard to imagine that ALL personal support staff and visitors must continue to wear full personal protective equipment (PPE) at all times. However, masks, hand sanitizer and frequent, thorough hand-washing are a minimum protection and should likely remain in place even after the pandemic subsides.

Is the Novel Coronavirus as deadly as PMA?


PMA, although it typically has a slower progression and therefore a longer life expectancy, is still 100% terminal. Current estimates are that only less than 3% of the general population will eventually succumb to COVID 19. These numbers skyrocket however when we include the elderly and those in Long term care facilities. Currently, in Canada, we are learning that almost 80% of all Coronavirus fatalities are in this group. There can be little reasonable doubt that morbidity rates increase when those of us with any motor neuron disease also contract COVID 19.


Should I do anything differently to protect myself?


Now is not the time to be reticent or polite! This is YOUR life and health at stake. Insist that others make special allowances for you: shopping hours, get stuff delivered. Keep up with range-of-motion and whatever other exercise is both beneficial and appropriate.
You are probably not getting the visits and human interaction that you are used to. Be proactive: phone, Skype, Facetime, Email, Social Media, online games etc. All contact is beneficial. Above all, try to avoid the temptation to become depressed. Lean on others, at a distance of 2 metres 🤔, for support and assistance. One of the positive aspects of these unprecedented times is that many, if not most, are stepping up to help those of us who need it the most.