I understand completely younggun and Jazzy. I have been lucky so far as my wife has stuck by my side. I don't know where I would be without her. She has seen my decline physically and mentally, my memory she use to depend on. Now I have to depend on hers and notes that I take. And welcome Jazzy !!
Great thread! It really does take an emotional toll on us. I know I'm not "old" but in June of this year marks 6 years from the day I was injured. I cannot believe how quickly time has gone by and the worse part is that it's only going to go by faster the busier I get (school, etc). It really hit me a couple days ago actually when I was sick. I'm only 21 and here I am with pneumonia due to complications (weakened chest muscles, etc) caused by my injury. I can bet any money that I never would have gotten this if I weren't injured because of how strong my immune system was before. It made me thing, if I'm dealing with this kinda stuff now, what's going to happen in 10 or 20 years from now? I try not to think about bad stuff and hope I'll be better by then but it really is scary the whole thought of getting older.
Great thread! It really does take an emotional toll on us. I know I'm not "old" but in June of this year marks 6 years from the day I was injured. I cannot believe how quickly time has gone by and the worse part is that it's only going to go by faster the busier I get (school, etc). It really hit me a couple days ago actually when I was sick. I'm only 21 and here I am with pneumonia due to complications (weakened chest muscles, etc) caused by my injury. I can bet any money that I never would have gotten this if I weren't injured because of how strong my immune system was before. It made me thing, if I'm dealing with this kinda stuff now, what's going to happen in 10 or 20 years from now? I try not to think about bad stuff and hope I'll be better by then but it really is scary the whole thought of getting older.
Accepting ALL the implications of being a young quad is very hard. Sooner or later the wise person comes to accept their reality, and the reality of being a quad includes sever physical risk for most all of us. Just the risk of using a catheter changes life expectations immensely. If I compare myself to my AB peers I feel cheated, but if I take a longer view to include human expectations of even only the last 1000 years, then I'm lucky to have lived through childhood and know for certain that I would have died shortly after my accident just 100 years ago. That makes last 8 years have been a gift.
Make whatever plans fill your heart and live each day, or year as fully as you may. In reality no one knows what their lifespan will be, but an honest quad with health challenges knows some limitations, or risks, that are unknown to others. Death is always waiting for all of us. Give him a wave and live as best you can.
Post by fishkybizniz on Jul 12, 2017 13:32:19 GMT -8
Well I'm not in a wheelchair but I am trapped. The stress from the cord injury put too much stress on my adrenal system that was already compromised with hypoglycemia thrusting me into an advanced case of Addisons. The cord injury and Addisons antagonize each other. Meanwhile I'm stuck keeping my emotions in check and work to build stamina. To avoid an emotional melt, I started a business. When I told my doctor he looked at me like I had 2 heads. I assured him no worries, it's forgiving to my schedule. I also took up sponsoring a child. This is truly one of those whose rescuing who deals. And lastly, I joined a website to sell my used clothes. So how does this relate to mobility? I'm bringing a world to me that I can and want to manage. I'm getting away from talking about medical me. The vibrant me is still alive inside the frail body me. If my business takes off, maybe it will pay for a caregiver so I can stay at home? I had a caregiver for 2 yrs. and got well enough to fly solo. It's the right thing to do to anticipate our elderly future. As my doctor framed it, it is what it is.
I understand completely younggun and Jazzy. I have been lucky so far as my wife has stuck by my side. I don't know where I would be without her. She has seen my decline physically and mentally, my memory she use to depend on. Now I have to depend on hers and notes that I take. And welcome Jazzy !!
I'm right with you on memory decline. My wife and I get in spats because she's getting ready to go and I don't remember why or where. She says she told me twice yesterday, yet I bet money she didn't . We both recognize that its probably the meds and I'm pretty sure it's not getting better. I just need to learn how to be not so damn sure of myself.
I'm there with you Kilg, it is just denial on my part. But I also refuse to argue with the ones that I love. Too many hurtful things come out when we get mad, and we can't take it back. So for me it's just not an option, I decided this many years ago. And I won't argue over money, either we have it or we don't.
Post by fishkybizniz on Aug 8, 2017 16:23:21 GMT -8
I'm toast brain if I have an infection. I misspoke, I'm pituitary adrenal insufficiency and disease hypoglycemia and meds are being blamed for the potassium. Like it matters, it all ends up the same. I guess it's helpful to have good working kidneys to kill? The Cordisol drop and spasticity push all of my somethings gone sideways buttons. I'm slammed like a bad flu, and forget everything I know. Epic!
Post by fishkybizniz on Aug 8, 2017 16:32:43 GMT -8
Hey kilg0retr0ut, there are some games you can play on your phone or computer that exercise the brain. I felt like I was slipping up too much. I play games I enjoy as well as the exercise types and I've noticed a difference.
Here’s a story from 2012 about what happens when an assisted living resident complains publicly,...at least this is what happens in Texas. Though the story is a few years old, it is still relevant. Frustrating. Sad. This is the story from March... State Finds In Favor Of Paralyzed Woman’s Mistreatment Claims By Jack Douglas Jr., CBS 11 Investigative Producer March 19, 2012 at 10:15 pm dfw.cbslocal.com/2012/03/19/state-finds-in-favor-of-paralyzed-womans-mistreatment-claims/
This is the follow-up story from May... dfw.cbslocal.com/2012/05/02/paralyzed-woman-gets-eviction-notice-after-complaining-of-neglect/ Paralyzed Woman Gets Eviction Notice After Complaining Of Neglect By Jack Douglas, CBS 11 News Investigative Producer May 2, 2012 at 9:17 pm FORT WORTH (CBSDFW.COM) – Operators of a large group home for the disabled in Fort Worth are preparing to evict a paralyzed woman from her home of 11 years after she appeared on CBS 11 News and talked about neglect at the facility.
The charges, made amid a CBS 11 News investigation in March, were ultimately substantiated by the state.
And while the resident and a former nurse at Westchester Plaza said they feel the action is a clear case of retaliation, two state officials said there is little they can do to stop the eviction because of the way Texas laws are written.
“I’ve got no place to go,” a shaken Fatima Jalilian told CBS 11’s Jason Allen in an exclusive interview on Wednesday. “This is 100 percent retaliatory. Everybody saw this coming except me,” said Jalilian, who was paralyzed in a car wreck 19 years ago.
On March 19, CBS 11 reported Jalilian’s fears that the management at Westchester was blocking deliveries that were being sent there for her, including needed medical supplies. The state, which initiated an investigation once CBS 11 began looking into Jalilian’s claims, agreed with her, saying in a final report that Westchester “failed to allow resident Jalilian to receive her mail.”
The report also found that “the facility failed to provide a non-retaliatory environment through which resident Jalilian can voice grievances.”
While finding that the facility violated regulations meant to protect patients, the state did not punish Westchester, saying that it felt breakdowns were being corrected.
Now, Westchester is retaliating again, according to Jalilian, as well as her former nurse at the facility, Tammy Sides.
“It doesn’t surprise me at all that they’ve decided to evict her,” Sides told CBS 11 on Wednesday. “I heard that from the get-go right after she was on Channel 11 News.”
Jeff Bryant, manager of Westchester, denied that Jalilian was being evicted because of her complaints against the facility. Instead, Bryant said, she was being made to leave –– within 30 days –– because her paralysis makes it difficult for the Westchester staff to meet her needs.
“This woman has been here, unfortunately, for an extended period of time in an inappropriate fashion,” he said, after meeting a CBS 11 News crew that was attempting to go up to Jalilian’s room.
“She is totally inappropriate for this setting,” Bryant said, adding: “What we’re doing is completely legal.”
After speaking to CBS 11, Bryant had a staff member posted outside Jalilian’s room, pen and pad in hand, as reporter Jason Allen interviewed the distraught woman.
Afterwards, the staffer was instructed to follow the news crew as it left the building.
Jalilian, who is virtually bed-ridden, received her 30-day eviction notice on Tuesday. It said, in part, that the decision to force her out was made after “consulting” with state health officials, including a state ombudsman and representatives of the Department of Aging and Disability Services, also known as DADS.
The letter also told Jalilian “we regret to inform you” that she had to go “no later than May 31.”
Allison Lowery, lead spokesperson for DADS in Austin, said the agency had some limited conversations with Westchester’s management about Jalilian being evicted.
“But just to be really clear, the fact that we had that conversation … does not mean that the state in any way is onboard with that decision,” Lowery said.
She said Jalilian could easily stay at Westchester, as she desires, if the management agreed to make some changes in their level of care. But the facility’s operators “would have to agree” to make those changes …”we will be having a conversation with them about that.”
“They can accommodate her if they take additional steps to do so,” Lowery said.
Jalilian can also appeal her eviction, but ”there’s not much to it” because Westchester, by law, is allowed to have total control of the appeal proceedings and its findings, said Patty Ducayet, the state’s chief ombudsman for long-term-care patients.
“As an advocate, I think that is a real weakness when it comes to protecting the rights of people who live in assisted living facilities,” Ducayet said.
“This is specifically something that ombudsmen really want to see changed … so that there is some real protection for somebody being threatened with discharge,” she said.
Even if the state finds that Westchester operators had acted in a retaliatory way in forcing Jaililian from her home, there is still nothing the state can do to prevent the eviction, both Lowery and Ducayet said.
“Sometimes the odds are not in the resident’s favor … this assisted living (industry in Texas) is very much a business,” Ducayet conceded.
“It is not regulated by federal laws,” she added, “and it functions differently than, say a nursing home, where we have a lot of federal laws and protections.”
Meanwhile, Jalilian remains in the room she has called home for more than a decade, confined to a bed, where she is beginning to feel defeated – not only by her body, but by the people entrusted in caring for her.
She told CBS 11, almost in a whisper, “I am being bullied.”