Category Archives: Travelling with PMA

Accessibility in Milan

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 

 

PMA – Problems Made Acceptable

PMA - Problems Made Acceptable

PMA – Problems Made Acceptable:

What do I mean by PMA  – Problems Made Acceptable?

I recently came across a list of things that non-pALS could do to begin to imagine what it is like having MND/ALS . The list contained some items that did apply to PMA, in my case at least, and some that didn’t. It did get me to thinking about symptoms, obstacles and challenges and how I have come to terms with them either by finding workarounds or by accepting that I will have to make the best of my ‘new normal’.

PROBLEM: I continually have cold & swollen lower extremities. This is the absolute worst of my symptoms because I have found no permanent solution that does not involve lying with my feet up. Try to imagine sitting all day with your feet and legs immersed in buckets of cold water! My neurologist told me that this was not a ‘normal’ problem for pALS but research on PLM shows 300 instances ranging from severe to moderate

SOLUTION: Although I can get temporary relief, this one persists. Partial or temporary solutions include:
Heated socks, long Johns, heated insoles, compression socks, keeping feet and legs moving as much as possible. All I can still do autonomously is wiggle my toes but even manipulating or massaging my feet and legs seems to help blood-flow! I refuse to stay supine all day. Last year, even when in Barbados, I still occasionally had cold feet!

PROBLEM: Constant Fatigue. This is the second most challenging part of the disease for me. After the exertions of taking a shower or bath or even simply(sic) getting dressed, I usually want to go back to bed. I suppose that it is really not surprising since I am trying to carry 50lbs of dead weight around with only my upper body functioning. Imagine having a 50lb bag of salt strapped to your waist. Now try to move from one chair to another!

SOLUTION: Other than staying inactive, I really have not found any meaningful solution. I do know that the absolute worst thing that I can do is to ‘power through’. When I become overtired, my muscles ache, tremors and fasciculations abound and I risk crashing the following day too. I have determined that I can do more earlier in the day and that I can accomplish more if I work in fits and starts rather than trying to continue tasks once I start to become tired. If I need to take a nap in the afternoon, this is a sure sign that I overdid it in the morning. I do regularly check relevant vitamin and mineral levels in my body and do everything to keep those at optimum levels. I aim to keep my body in the best condition possible to help offset the physical deficits.

PROBLEM: When outside the house, any obstacle higher than 3″ might as well be Mount Everest. All I can do is either stare powerlessly at where I want to go or, retrace my route and try to find another way. Check out the top image to see Milan’s idea of accessibility. 90% of stores and restaurants were inaccessible to my wheelchair (also pictured).

SOLUTION: Until such time as they develop scooters and wheelchairs that climb stairs and curbs, there really is no solution to this except to re-route. We do have a portable ramp in our SUV that can handle steps and curbs up to 6 – 8 inches but we can’t carry it with us all the time. In any event, often sidewalks are not wide enough for the wheelchair or scooter to navigate the ramp.

PROBLEM: Cramps and Fasciculations. Many medical professionals claim that there is no pain associated with MND (LINK). This is patently not true. In my early stages, some of the cramps were so intense that they approached the magnitude of kidney stones.

SOLUTION: I must stress here that what has worked for me may not work for others. For the cramps, regularly taking supplemental magnesium seemed to greatly reduce the intensity. The most relief for both cramps and fasciculations occurred once I started to regularly use CBD/THC blends.

PROBLEM: Dressing, Toileting, bathing, shaving, showering, etc. Before PMA, I could shower and dress easily in 10 – 15 minutes. Now it can take an hour or more and I still have full upper body function. To get some idea of how challenging this can be, try these two exercises. Try to put on knee-high socks while wearing mittens or try to pull up your pants and underwear while seated or while standing holding on for balance with at least one hand.

SOLUTION: We spent $30,000+ to have our bathroom remodelled by an accessibility specialist. It was expensive but worth every penny. It still takes me a while but at least I feel safe and can get my wheelchair/walker in the room. I now wear clothes that have few buttons, clips or belts. I also make sure that I have the necessary seats and supports in the places where I will need them. With the right methods and equipment, many challenges can be mitigated although rarely eliminated altogether.

PROBLEM: Navigating Stairs. We live in a 3 storey home. Stairs to the upper level not only curve but have two landings. To the basement, we have two sets of steps with a 180-degree bend. In any other house, if I am even able to navigate into the house using ramps etc., I must resign myself to the fact that I will NEVER be able to go upstairs or downstairs.

SOLUTION: We have so far installed 2 stair-lifts. One goes all the way upstairs but to get to the basement, I must hoist my body up and down 3 steps to reach the second stair-lift. We have also installed a porch lift so that I can get from the deck to the garden/pool without going through the garage and all around the outside of the house. Beyond our own house, I must accept the fact that I am barred from many friends’ houses and an alarming number of businesses and public buildings.

PROBLEM: Finding Accessible Washrooms. I recently spent 8 hours on an aircraft within 6 feet of the nearest washroom but was unable to access it. Many public locales that claim to have accessible facilities either keep them locked or they were designed by people who do not comprehend what ‘accessible’ means.

SOLUTION: Having travelled widely with mobility equipment throughout North America and Europe, I can attest that we still have a long way to go but that things ARE improving (even if slowly). As the world’s population ages and technology advances, it is my fervent hope that future generations of mobility challenged persons will be even better served than our own. Notwithstanding the foregoing, I must say here that I am eternally grateful to be living in a part of the world where I have access to most of the facilities and equipment that can make my life easier and more comfortable. Were I living either as little as a 100 years ago or residing in a 3rd world country, I would already be dead!

PROBLEM: Navigating the medical professionals who, with the best of intentions, insist that they know what is best for me even though the vast majority of them have rarely, if ever, treated other patients with the exact same disease (PMA -Progressive Muscular Atrophy) and progression as myself. To put this in perspective, there are currently less than a handful of cases in Eastern Ontario from a population of 1.5 million. Of these, only 1 other individual has lower limb onset PMA like myself.

SOLUTION: Do your own research, join forums and Facebook groups and make sure that you know more about your own situation than those caring for you. Don’t take ‘no’ for an answer and DEMAND that you be heard. You ARE in control as long as you insist upon it. Swallow your pride and ask for help when you need it, especially from friends and loved ones. Even total strangers will often step up to the plate and freely and willingly offer assistance. Taking advantage of this shows strength rather than weakness, just be sure to say ‘thank you’. This is/was one of the hardest things for me to accept and I am still struggling with it every day. Many times in my life, I have been guilty of ‘cutting off my nose to spite my face’. I can no longer afford this luxury.

In conclusion, I must say that,  as a society, we have a long way to go before “PMA – Problems Made Acceptable” becomes a reality!

European Travel with PMA

European Travel with PMA-ALS-MND
All set to start the European Trek

WestJet Ottawa-Halifax-London Gatwick

European Travel with PMA – WestJet

This was my third time traveling with WestJet with a mobility scooter and the second time, transatlantic. On the whole, they do a good job of making life easier for those with mobility issues. My key piece of advice to avoid damage to your scooter or power wheelchair is to be sure to wait with it until it is completely collapsed and ready for storage in the hold of the aircraft.

  My scooter was damaged on 2 of the last 3 flights simply because the baggage handlers did not know how to correctly stow it. Armed with this foreknowledge, I was able to ensure that it arrived safe and sound. Mobility assistance at Ottawa, Halifax and London Gatwick was good and it was a great help having done it before and therefore knowing what to expect and how to avoid potential pitfalls. My key recommendation, if you are traveling alone, as I was, is to check everything possible and keep hand baggage to the minimum. Personally, I need both hands for crutches and/or cane, so my hand luggage must be carried by an assistant.  Be aware that almost all airlines now require that any and all lithium batteries must be removed and carried on board.

Traveling in Europe with PMA-ALS-MND
Arriving in Halifax

On arrival in London, I needed to take a bus to Oxford. When traveling with the National Coach Service, you need  to let them know ahead of time if you will need assistance boarding the bus. In the case of the Oxford Bus Lines, every bus has a lift/ramp to avoid climbing the very unfriendly stairs.

Accessibility in Oxford

Although great strides may have been made in recent years, many countries, England/UK included, have a long way to go. Many times, I found myself trapped on a sidewalk with steep curbs that my scooter was unable to navigate, necessitating tiresome detours. Also, many stores, restaurants and cinemas have threshold steps that are not accessibility-friendly.

Accessibility in Oxford
Lots to see and do in Oxford

To visit the Oxford Botanic Gardens, we had to make a detour of at least 1.5 kms because there is only a single accessible entrance. All the others have either steps or turnstiles that are not friendly to scooters or wheelchairs.

Accessibility in Eastbourne

My next stop was in Eastbourne, in East Sussex on the South coast. Because all of my family’s homes all have  accessibility issues, mostly in terms of entrance steps or bathrooms on second floors, I was forced to find an accessible hotel. The only one available, due to an international tennis tournament, The Grande Aparthotel, was not nearly as accessible as claimed. The worst aspect was the steep slope down to reception that would be impossible for many scooters and power wheelchairs. Upon checking out, with my luggage on board, some kind stranger had to give me a push to get me up the hill! In addition, fire doors often made passage through corridors extremely difficult.

Accessibility in Eastbourne
Eastbourne pedestrian mall

Eastbourne has some of the same problems as Oxford when it comes to getting around on a scooter or wheelchair, although since it is a somewhat more modern town, more streets, sidewalks and stores are still fairly accessible.

Next stop: Switzerland

 

 

You Can’t Beat Gravity!

Triaxe Sport

What goes up, must come down!

Unfortunately, the reverse is not always true, as I discovered to my detriment today!

Ever since my diagnosis of PMA, I have adopted any tool, device or method that would help mitigate my declining mobility. I recently purchased the mobility scooter pictured above, a Triaxe Sport. It came back from Florida to Ottawa and has already taken a second flight to Windsor, Ontario. It is light (49 lbs without battery), speedy – 21KPH  and takes the bumps better than my previous scooter, an eWheels EW07.

Already, I had tipped my previous mobility scooter a couple of times. I believed the new scooter to be much more secure. It has two small outrigger wheels on the front and two more on a bar that CAN be extended at the back. And therein lies the first problem. I did not extend the back wheels today!

Center of gravity is a concept that most of us understand to some degree. It is also a matter of degree. The higher the degree of incline, the greater the likelihood of mishap. I will be the first to admit that I am a person who does not shy away from risk. So, when I saw a path that was interesting, I took it. It was paved, to start with. It wasn’t too steep, to start with.

Well to cut a long story short, I now found myself at the bottom of a steep incline at a point where stone changed to pavement. This transition prevented me from getting a run up to make the hill. From a standstill, I managed to get partway up and then the scooter would go no further. I was leaning forward to put more weight on the front wheel, or else it tends to spin. Once the scooter had stopped moving, I applied the brake and leaned back on the seat.

The Gravity of Wounds or Wounds of Gravity?

That was the tipping point, literally! It happened in slow motion and there was nothing I could do to stop it. Yet again, I am indebted to strangers who got me back up and tended my wounds (pictured).

Wounds of Gravity

The same gentleman who unceremoniously hoisted me back to my feet also pushed me up the hill and made sure that I was back on track before leaving. Luckily, nothing was broken. My camera and cellphone survived being thrown to the ground and there was no lasting damage to the scooter. My elbow and right hip will be a reminder of my folly for a while to come.

The Lesson to be Learned?

When I called my wife to related the incident, as she was laughing, she asked: “And what have you learned from this?” I replied: “Absolutely nothing!”.

Will I be more careful (fearful) next time? Probably not! I know my limits and those of the scooter. The real problem is that I don’t like limits and always try to push them. Gravity, however, will not be denied!

Travelling with PMA

Travelling with PMA/ALS/MND

Traveling with ALS/MND

One of the questions that arises soon after being diagnosed with any motor neuron disease is: “How will it affect my ability to travel?”

When I first got my diagnosis back in October 2017, this was one of my primary concerns. My family is very spread out across the world and my wife and I love to travel (we met in France). At that time, I was just starting to adjust to walking with a cane and found one called a flipstick which converts to a seat on the fly.

In Nov. 2017 – Jan. 2018., I spent 2 months travelling about Europe by air, car and train and foolishly insisted on behaving like an able-bodied passenger. As a result, I arrived at my destinations tired and stressed. During those 2 months, my legs deteriorated considerably, perhaps, at least in part, because I asked more of them than they were able to supply. By the end of my trip, I was starting to think that it might be my last!

Finally, obstinacy gave way to practicality and comfort. My most recent trip to the Caribbean was so much better once I registered for assistance with the airlines and I allowed my travel companions to take over caring for my luggage and other details. On the one airline, LIAT, where we had omitted to request assistance, they noted my struggles climbing aboard and had a wheelchair waiting for me as we disembarked.

My main hang-up was that I didn’t want to appear lazy (I look as though I am still fully able-bodied). Also, I worried about losing my precious independence. I realise now that both of these were a hindrance. Friends and relatives and even strangers are only too willing to help. We pALS have enough to deal with without adding additional roadblocks for ourselves.

In the picture above, you can see my wheelchair waiting for me as we disembark in Bridgetown, Barbados!

Although the assistance offered by the airlines is far from perfect, they do try. Be sure to check with your airline or travel agent to discover what options they offer for the mobility impaired.  To those who are nervous about travelling with PMA, I would say: Go for It!

P.S. There is a Facebook page dedicated to Travelling with ALS and most of the information, support and advice offered is applicable to Progressive Muscular Atrophy. There is also a great deal of information available on the ALS section of the PLM Forum