Have you traveled soon after your diagnosis?

[Dagmar]

Hi Ann – – if we were living in “normal circumstances,” it would be wonderful and self-fulfilling for you and your husband to travel and visits sites that you may not be able to travel to due to his future health status. Many pALS have enjoyed cruises, train trips, tours, and such – – and report that they were glad they did it while they could.

During my 2nd year with ALS, my husband and I packed my rollator in the trunk of the car and went on a road trip that included a visit to the South Rim of the Grand Canyon. We have many photos and happy memories of that trip.

However, now we pALS and cALS have to not only think about handicap accessibility when traveling, but avoiding COVID as well. And, who knows if where you want to go will let you in (without first requiring a 14-day quarantine).

So, let’s hear from our forum members… Anyone with suggestions as to safe, enjoyable, accessible places that a pALS can travel to? What have been your travel experiences during these past few months?

[marianne-opilla]

Hello Ann,

I’m sorry to hear of your husband’s diagnosis but glad he is walking.

I traveled to Switzerland in Feb (diagnosis Sept 2019).  I could still walk well and actually skied.  RV trip to the beach in Oct 2019, along with several long weekend trips that involved hiking/biking.  Glad we did this because now I cannot.

Our children live on the west coast and we are on the east coast, so we usually (pre ALS) travel there by RV for a few months Sept-Nov.  I have gotten weaker since Feb and not sure how much help I will be setting up RV. Also trying to arrange my IV Radicava to be shipped to Arizona, has been a challenge.  But my husband, me, and 2 retrievers plan to make the trip next month one more time before I can’t.

TRAVEL WHILE YOU CAN! Use your COVID precautions and go!  My son + family traveled by air to visit us in July and said he felt very safe on Southwest airlines.  Wear your masks and bring LOTS of lysol wipes for bathrooms, food places, or airline seats.

Godspeed!

Marianne

[karen-goldhirsh]

My husband who was diagnosed 2 years ago have traveled several times.  We drove to Denver, CO to visit my daughter and son-in-law staying one night in a motel in Cedar City, Utah.  Check out any hotel/motel for their cleaning process.  A motel is nice since it is outside entry to your room versus having to go through a lobby.I still went in the room sprayed Lysol everywhere.  We flew to Boston to visit our grandchildren first class on American.  I had my husband sit in window seat since it is the furthest away from passengers loading on plane.  Again I wiped down everything.  It has been over 2 weeks since we travelled so we are okay.  Last weekend we drove to Phoenix to stay with trusted friends at their home.  I fill up the car with gas to eliminate the possible contacts for him.  You really have to decide if the risk is worth it for us not knowing how much time he has it is worth it.

[bill1949]

I’ve traveled for family visits by plane a couple of times since diagnosis. A lot will depend on your husbands needs. I’m still mobile and eating regular food so no major hurdles. I do find the travel, strange beds, just being away from routine is a little uncomfortable but not enough to not go. Enjoy while you can.

[susanarchitect]

Yes traveled with cane and scooter but since March 2020 home bound.

[david-crellin]

The weekend after my diagnosis  (3 March) was my wife’s 60th. So I joined her and numerous friends in a walking holiday. I only managed 19 miles,( having run 15 miles & walked 12 miles a day for a week supporting her 50th birthday week!). Then drove 7 hours to our cottage in rural Wales where family live and ate with them and local friends there. Then lockdown was announced, drove home, drove to far north of Scotland to collect my son, back home. Since then I’ve been fairly isolated, but formed a ‘bubble’ with my 93 yr old dad and have traveled to stay with him a few times.

I wear a mask, carry hand sanitizer, travel in my campervan/motorhome with shower, washroom (toilet as we in UK call it) kitchen and provisions on board and a 1000 mile fuel tank. So I travel totally isolated from Covid19.

I chair a parish (community) council and we meet by Zoom.

So it can be done.

And I was surprised that my consultant continued face to face meetings with rather lax attention to mask wearing.

Take care, and enjoy life as much as you can while you can. I managed to walk down & up 121 steps to my favourite beach last week, swam, cycled 8 miles – and was exhausted. But it was worth every step.

David

[ann-thomson]

Thank You so much for all of you and thank you for your advice.

[dennis-fossenier]

I was diagnosed with ALS in November 2019.  We had just gone on a one month holiday to Europe in September which we were thankful we did while I still could walk.  Two weeks of the trip was a river cruise where we went daily on walking tours.  I was able to join the tours walking with a cane.  At times I was behind the group but always caught up when they were looking and discussing some architecture or such.

We have been travelling to Arizona for the winter months for the past 10 years so in January we decided to go even though I was having further trouble walking.  We have lots of friends down there and decided it was better to be among friends in nice warm climate as opposed to spending the winter in our home in Canada. I was no longer able to play tennis, ball, pickleball, etc due to my balance issues but was still able to get around and be a spectator.  I did not want to just sit at home and dwell on the situation.  We ended up having to come back in mid March due to COVID and have been self isolated since then except for occasional visits with our close family.

Upon my diagnosis we were planning on going to Disneyland with our grand kids in the summer and to Hawaii for a couple weeks in the winter of 2020-2021.  Due to Covid none of this is possible now.   We have taken some camping trips with our kids and grand kids which we feel are safe since we have our own site and avoid crowds at the beach and such.  We have a boat so we can go fishing and watch the youngsters do water sports although I do have to be carried onto the boat at times.  I have a walker to get around short distances and a scooter to take hikes with the family.

I feel we need to try to do what we can to get out and enjoy life even though what we can do is limited.