deann-r
Forum Replies Created
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Unfortunately not many homes are accessible. I can count on one hand how many houses I can get into, and two of those include my house and my Mom’s. My sister’s house isn’t even accessible anymore. They removed the ramp that was put in when they built the house because it was inconvenient for them (too slippery or something.) If she hosts a gathering they have to put up a 4-wheeler ramp to get me in. It takes two people to assist as that ramp is so steep I’m afraid my chair will tumble down it if someone doesn’t hang on. Although it irritates me to no end they took the ramp out, it isn’t my house. My question is why people think it’s either a ramp or steps. Why can’t you do both?
Outdoor bbq’s and parties are great during the summer months. It’s a little trickier in the winter. We usually settle for a movie or restaurant. Otherwise we host the party. Kind of stinks, but it is what it is.
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When I was in my early 20’s I had several people ask why I didn’t pursue driving. I’m a big proponent of knowing your limitations. What if my hand slipped? What if I accelerated too quickly and my head fell back? Could I turn my head far enough to see traffic? Too many factors that could put my life and the lives of others at risk. For those who do feel they have the ability that’s great, but it’s certainly not for me.
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When I was on my dad’s insurance it sure seemed things went through a lot quicker. I’m now on Medicare and Medicaid as secondary. It has met my needs, however I know companies don’t always get reimbursed adequately. I’ve had to make compromises in medication and equipment because of what they don’t cover. It also seems to take increasingly longer to get things approved. Shockingly Spinraza is being approved for now. It still makes me nervous though.
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For me it was difficult to find accessible housing and care simultaneously. At one point it prevented me from transferring schools. In the end I found housing first and had family members filling in until I found adequate staffing.
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Swallowing is difficult to gauge improvement without a swallow study. Personally I have been “cheating” with regular food more often, however I doubt I’d pass a swallow study. It’s probably more wishful thinking than any significant improvement.
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Those are the type of people who I’d love to see walk in our shoes sort of speak. Bet he couldn’t hack it for a day. Unfortunately those are also the type of people who don’t listen to reason. Heaven forbid he would have a child with a disability. Bet he’d change his tune pretty quick if that were the case.
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Although I never thought I struggled with my voice, I know it’s always difficult to communicate in noisy situations as my voice doesn’t carry. Since starting Spinraza, a couple of people have said my voice seems louder. Speech therapy was something I did when we found out I lost my swallow. We did something called Vital Stim where they tape these electrode thingys on my neck while I did exercises. At the time it didn’t seem to help much. Wondering if it would be worth another shot now that I’m on Spinraza. Other exercises included sticking your tongue out and swallowing, holding your swallow mid-swallow for a couple seconds and also emphasizing the letter K in words. Apparently it strengthens those muscles back there. Not sure if they do other exercises to strengthen voice.
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I’m more confused about diet than ever! Plus I have a feeding tube, so I never know if I should mess with the formula. Since I do “cheat” with regular food, I try to keep it foods that I enjoy, but I know I should choose healthier options. My difficulty lies in that those healthier options don’t really break down to be easy to swallow. Nuts are out as well as most veggies. I do like the shake idea Michael. Where do you get it?
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If I don’t wear shoes the mosquitoes find my feet, must be all the blood pooled down there, ha ha. It about killed me to cut into a new pair, but I didn’t want to give up that easy.
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I’ve heard through the grapevine that access tops the list as to what’s holding people back. Some countries don’t have access, while others are putting age and type restrictions on who can receive it. Even in the US where there instances where access is an obstacle. Either with getting approval or finding a facility for treatment. My best advice is to be patient yet persistent.
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Adnan, I just checked on Amazon, they had the Show on sale for $159.99 typically $229.99. https://www.amazon.com/Amazon-Echo-Show-Alexa-Enabled-Black/dp/B01J24C0TI/ref=gbph_img_m-3_f5ba_d1c95c85?smid=ATVPDKIKX0DER&pf_rd_p=3819fc6b-51a0-4a0e-a6ed-d3559927f5ba&pf_rd_s=merchandised-search-3&pf_rd_t=101&pf_rd_i=11851273011&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=P5Q12T403DT4ZWB5AZBD
I am a Prime member , so not sure if that price is available for everyone. They also have a Spot that looks pretty cool. Think I saw that for $109.99. Less expensive options are the Echo and Dot, but they don’t have screens. As Kevin said you may be able to get them on a secondary market more reasonably priced. I do love my Show!
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I’ve only gotten stuck a couple times. Once I went out to get the mail and the ramp was too icy to get back in. Luckily I always carry my cell phone and was able to call for assistance. Another happened right after a PCA left. My swing away joystick got caught on something catching me off guard, swinging away and pinning my arm so I couldn’t call for help. I did have to wait a few hours that time, but now that I have an Echo I don’t have to worry so much about being stranded.
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I love my heated mattress pad! Don’t know if I’d ever make use of a cooling feature. There’s always a disclaimer about not using them if you’re disabled, but it’s so nice getting into a warm bed.
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Big fan of memory foam toppers! Ever since my spine was fused it’s a must. Probably dating myself, but I did love my waterbed. Especially because it was heated.
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I love the predictive keyboard! My mom hates it, so I had to turn off the feature on her phone otherwise I’d have no clue what she’s trying to say.
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David, you’ll have to make your bed voice activated next! Glad you’ve found somewhere you can be comfortable and productive. Do you use a hospital bed? I’ve never found bed to be very comfortable.
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It seems like the good ones always tend to move on to bigger and better things. Although I’m happy for them I hate to see them leave.
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I mastered the catapult method. Where you put food on your spoon or fork, then flip it into your mouth. Needless to say I got a lot of looks doing this, but it worked for me. Maybe not for every food, but soup was never my thing anyway. For soup I’d use a straw. Can you believe some restaurants aren’t going to be giving you straws anymore? Supposedly it’s an environmental thing.
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Thanks Kevin! It does seem like staffing shortages are a common problem. For weekends I’ve found if I alternate weekends I find staff easier. They’re more apt to take a job when they know it’s every other weekend instead of every weekend.
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I lost my father a couple years ago. My mom is probably the strongest person I know. With a full-time job an twin girls, my sister helps out when she can. This summer I’ve hired my nieces to mow my lawn. We’ll see how that goes. They just turned 13.
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Adnan, I haven’t been fishing for years, but when I did I would always hope to catch small ones so they wouldn’t take the pole with them. Still like going out to the lake even if I don’t fish.
Kevin, Sorry to say not much into comics, but I’m a fan of the Walking Dead. Are those comics any good?
Michael, what editing software do you use?
Ryan, a little jealous you can play chess. I’ve played but not very good at it. Kind of miss the days of ATARI where the controller was one button and a joystick.
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What a bummer Adnan. Technology like that can be fun and helpful. Guess you’ll have to settle for doing things old school. Trust me, you can do almost everything the Echo can do with a yardstick.
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David, as far as cough assist settings I would just try it out and see what you feel comfortable with. When I got mine home pressures were set at +15/-15 and it was way too weak. Found out SMA protocol is +40/-40. I’ve worked up to +35/-35 and am good with that for now. Might bump it up next time I actually get a cough. I probably should be using it every day just for the exercise, but I don’t.
Definitely going to ask about the mini-one. I lean into mine with the way I sit, so softer would be beneficial for sure. The mic-key is way better than what I started with, but nothing wrong with options! How often does it need changing?
I’m sure I’d qualify for BiPAP, but think they’d want me to do a sleep study first. Always concerned they’ll point out 10 extra things wrong with me and not address the reason I’m there. Do you just use a nasal mask? One reason I’m hesitant is that during a hospital stay they had me using it with a full face mask and it was like I was getting blown away or something. Did you get used to it quickly?
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If you have any favorites please share Adnan! I’m always looking for good movie/reading recommendations.