patrick-lenihan
Forum Replies Created
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The winters in the Pacific Northwest are much milder than they are in Rhode Island. I don’t miss Rhode Island Winters at all. Although it is too cold for me to walk down to the bay or go kite flying, I still get a fair amount of outdoor time in nature. There’s quite a bit of wildlife viewing we can do from the van. I spend about 30 minutes a night unwinding by listening to vinyl LPs. I have a couple of concerts I’m going to this winter. A week ago we went away for the weekend to do some wine tasting in Woodinville Washington. We went to five wineries that weekend. I enjoy going to Taqueria’s and taco trucks and finding a scenic place to eat the tacos in the van. During the winter months we tend to cook more at home. Two weeks ago we made my vovó’s Linguiça Rolls. I watch a lot of Seattle Kraken hockey. I occasionally go to the twice monthly Dockside market at the Marina. Being near the water and fishing boats is very comforting for me.
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I think an updated adaptation of Henrik Ibsen’s A Doll’s House in which Nora Helmer has a physical disability would be very interesting.
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I have been using the PL400EF for six years. I love it but other reviews I’ve read of it have been hit and miss. It has a very small footprint which really helps navigating small spaces. It is easy to set up and breakdown. Folded up it takes up very little space to store. Most of the negative reviews relate to battery life. I recommend charging the battery every 2 to 3 days at the very least. I did have to replace the battery charger when I first got the lift but it was within warranty and they got it to me in a couple days. If you do have issues you really have to order from their webpage or call them and order from them. It is difficult to find parts from third-party vendors. I recommend ordering the lift itself through a reputable local vendor, perhaps your wheelchair vendor representative can give you some advice. I also recommend asking an occupational therapist or physical therapist for advice.
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I also am a side sleeper. What I have found that works best for me is the Resmed AirFit™ N30. It has a nasal cradle instead of nasal pillows. It is much easier on my nose. It is pretty easy for a caregiver to put it on properly.
https://www.resmed.com/en-us/products/cpap/masks/airfit-n30/
resmed.com
AirFit N30 is the CPAP mask that discreetly fits into your lifestyle to easily adjust to therapy. With soft, under-the-nose nasal cradle cushion and slip-on headgear.
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The 504 Sit-in.
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Others have transportation covered in their post. One thing that I recommend every first time visitor to New York City does, is to take the Circle Line Best of NYC Full Island Tour. Power wheelchair users have to board the boat at Pier 83.
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I treated myself to several vinyl LP records.
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I start every holiday season watching Miracle on 34th Street (1947 version). I then watch Santa Claus is Comin’ to Town, The Year Without a Santa Claus (1974 version ), Rudolf The Red Nosed Reindeer, Frosty the Snowman, Mr. Magoo’s Christmas Carol, A Charlie Brown Christmas, How the Grinch Stole Christmas (1966 version), The Jack Benny Hour 1965 Christmas episode, Scrooged, It’s a Wonderful Life, A Black Adder’s Christmas Carol, and Beavis and Butt-Head Do Christmas. I watch those before Christmas Eve. I save my three all time favorites for Christmas Eve and Christmas Day: those being White Christmas, A Christmas Story, and the 1951 version of Scrooge/A Christmas Carol starring Alastair Sim.
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Yes, winter coats do hinder my ability to drive my chair but so does being cold. If I am only going to be outside for a short time I will wear a scarf , hat and a wool fisherman’s sweater. If I’m going to be outdoors for longer periods of time I will put adhesive toe warmers on my base layer sleeves, then put on a battery operated heated vest with a fleece lined water proof rainproof wheel chair pancho or a sweater or fleece lined flannel shirt over it as a top layer. I also wear wool knit fingerless mittens or a waterproof fleece lined cover with a pocket for hand warmers for my wheelchair controller. A friend made the controller cover for me.
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I use Lume or Mando stick. They are the same company and both work very well and are gentle on my skin. I don’t use anything with aluminum in it and deodorants with baking soda irritate my skin. They also make a deodorant cream/lotion that is applied with the fingers.
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Las Vegas is probably the most accessible place I have visited. Although it really isn’t my cup of tea, I do recommend that everyone go there once in their lifetime just to experience the spectacle of the place. My favorite accessible vacation was a cruise on 100 foot retrofitted WW2 mine sweeper in Glacier Bay Alaska. Although the boat isn’t ADA compliant, you can get an average sized chair into a few of the cabins and into the head. They hooked a hoyer sling onto the davit and lowered me into a tandem sea Kayak every day. It was awesome. Check out Sea Wolf Adventures to learn more about it. You can also check out a video on my youtube channel that I made of my adventure.
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For disability podcasts I like BBC Access All and Disability Visibility (unfortunately there haven’t been any new episodes of Disability Visibility in 2 years). Disability After Dark with Andrew Gurza is an interesting podcast that deals with disability and sexuality but I rarely listen to it. Some non disability podcasts I love are WTF With Marc Maron, The Moth (a story telling podcast), The Splendid Table, This American Life, Radiolab, Ologies with Allie Ward (a science podcast), and Quirks & Quarks from CBC Radio (another science podcast).
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My biggest hurdle was choosing which dive bar to frequent when skipping classes. I am only half joking, which is why it took me six years to graduate. I attended college before the ADA was passed so my largest problem was getting classes that were scheduled in inaccessible spaces moved to accessible rooms.
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Congratulations on the new puppy! She is beautiful and adorable! I got a rottweiler puppy last summer. She was 5 months old when we got her because the breeder was holding her back for a friend. When the friend decided she couldn’t raise a puppy and a new born baby at the same time the breeder decided to rehome the puppy. We named the puppy Mavis after one of my favorite singers ( Mavis Staples). While SMA doesn’t factor into whether I get a puppy or dog, I do consider SMA when deciding which puppy or dog I select . I always choose a dog that has a temperament that is compatible with my lifestyle and abilities. We chose Mavis over her sister because Mavis was more mellow and has a lower prey drive. We also have an eight year old black Labrador retriever. Meet Mavis and Dougal!
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Yes, I do collect vinyl LPs. I have been collecting since 1975. I also collect compact discs , DVDs and Blu-ray discs. I love flying kites and I have 16 kites.
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Los Lobos – How Will the Wolf Survive?
The Roches – The Roches
Bill Evans Trio – Sunday At The Village Vanguard
John Coltrane – A Love Supreme
Sly And The Family Stone – There’s A Riot Goin’ On
Thelonious Monk – Brilliant Corners
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Given that the person in charge of cutting government spending referred to us as the parasite class, you should be worried about a reduction in government funding for SMA research. Nobody is getting rich making drugs that treat SMA. There are not enough people with SMA to cover the costs of developing and bringing treatments to market without large government subsidies. Also there are no off label uses that could increase sales. That is why research and development of treatments is funded through the government’s orphan drug program.
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If you can drive wearing mittens or fingerless mittens ,I suggest sticking a HotHands disposable toe warmer to the inside of your mitten or fingerless mitten so that the warmer rests on the top of your hand and or knuckles to keep your hands warm while driving your wheelchair. If I am just sitting outside having a drink or meal I use a rechargeable battery operated hand warmer. If you know someone who is good at sewing, you could commission them to make a fleece lined cover for your wheelchair controller that has a pocket insert for a HotHands hand warmer near where the top of your hand is located when driving your chair.
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If your chair has a port that you plug a charger into, you can use that port to charge and or power power banks, cellphones, tablets, etc… if you have a usb adapter for the port.
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Lume has lotion deodorant that you apply with fingers from a squeeze tube. You can get it on the Lume website.
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He just said he couldn’t change rooms. One of the dives I frequented had decent pizza and another had good Jamaican patties but to be honest the main reason I was going to dives was for the tequila and Guinness and to shoot pool. I also preferred the live music in the dives to the music the music In dance clubs and the what we called “meat markets”. I am a big folk, blues, jazz and reggae fan. Many acts that became popular in the 90’s I saw in dive bars before they “made it”.
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My favorites are The Moth, Oolgies and WTF.
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When I enrolled at URI in 1982, I got around on crutches and long leg braces. I also was able to drive a car and didn’t need caregivers at that point in my life. The only accommodation I needed was an accessible class room. Most of my professors were awesome and would ask me if needed any other accommodations. There was one professor who refused to move a class. I needed the class to graduate, so I had to crawl up the stairs dragging my crutches with me every day to get to class. In hindsight, I should have gone over his head and made him move the class (back then public schools and universities had to comply with the I.D.E.A.) but given the imbalance of power I felt because he was grading my work, I didn’t pursue it.