Blog Comments

  1. Spitzbub's Avatar
    Thanks, will do.
  2. SCI-Nurse's Avatar
    Thanks for sharing. Suggest posting this in the regular forums where it will be seen by more of our members.
  3. vjls's Avatar
    no we don/t we need people to be responable for their choice not talking about sci or ms etc but abortions be fat not 20 lbs but 50 plus

    we the taxpayer pay for it cut out er visit for some body that want bp taken yes it does happen.
  4. Spitzbub's Avatar
    Thanks for such a well-reasoned comment. I agree, and I typically shrug off most of the age-related carping I hear from others my age because hell, I've been in a chair for how many decades now? The only concern I'd have is if these are MS-related symptoms that could be checked – which are the kind that KLD pointed out above. I'm keeping an eye on it. Hope I hear from you again, thanks for reading.
  5. Tetracyclone's Avatar
    Before my SCI, around age 50, I began to notice cognitive decline, particularly with memory for nouns. This can occur for many reasons. I suffered some mild TBIs pre SCI, a modest one during my SCI accident when I drifted in and out of consciousness all day, and 2 more post SCI.

    I remember at age 45 having much difficulty remembering how to speak Spanish after around 5 pm, which showed me that language skills decline when we are tired. They also decline when we are sick. I do not doubt that medications have played a role in short-term memory challenges and problems remembering nouns, in particular.

    Now I am 69 and my health has been improving over the last 2 years. Memory is somewhat better, though still imperfect. This tells me that if a significant part of my memory dysfunction is due to dementia it is a slow moving problem and likely I will die before it cripples my life, so to speak. Or not- no one can say.

    My point is merely that some of your cognitive decline can likely be seen as 'normal'. Getting old with MS can be a mild annoyance or a major bit c h, but to some degree you can think of yourself as 'normal'. Why not?
  6. Spitzbub's Avatar
    Excellent. Sanders and maybe Warren are on board with it. Thanks for the info.
  7. SCI-Nurse's Avatar
    This is exactly why we need universal health care in the USA, such as is proposed in the House Bill 1384 "Medicare for All Act of 2019", primary sponsor Rep. Pramila Jayapal (D). I am not a fan of that name, as the program will be much better than Medicare (for example, covering dental, vision, and hearing services, as well as long-term care, no prior authorizations, no premiums, no need for supplemental insurance, etc.) but I am an active volunteer in the campaign to get this for the USA.

  8. Spitzbub's Avatar
    Thanks, will act on your suggestions. My neuro comes off poorly the way I wrote him. But he's turned a lot of things around for me so I'm going to bring up my concerns again on our next visit.
  9. Spitzbub's Avatar
    I saw entirely too much of Rush (as a patient) but 10 years too late. I would love to have heard her speak.
  10. SCI-Nurse's Avatar
    It is very common to develop some degree of cognitive dysfunction with MS over the long run. How much will differ from person to person, and generally is directly related to the location of large plaques in the brain. If you neurologist is not assessing this with you on a regular basis, ask to be referred to a neuropsychologist who can assess, and suggest compensation and remediation techniques to help manage this. A speech pathologist may also be a good option, as they are very involved in remediation of cognitive deficits. You might want to find a different neurologist who is more responsive to your needs, and has a less defeatist attitude toward the management of your MS.

  11. SCI-Nurse's Avatar
    I was in graduate school in Chicago, at Rush University (her alma mater) in 1981 & 1982, right after she started Access Living Chicago. She was a guest lecturer for our classes, and I also met her at RIC, where I had my clinical. She was also active at a number of disability rights conferences and even on the Phil Donahue show (filmed in Chicago) during the time I was there.
  12. Spitzbub's Avatar
    Thanks for reading. How did you know her?
  13. SCI-Nurse's Avatar
    Thank you. She was an amazing woman. I am honored to have known her.

  14. Spitzbub's Avatar
    I don't know much at all about taxes, but compared to other industrialized countries we spend twice as much per capita on medical and get worse results (tens of millions uninsured, falling life expectancies, higher drug prices, etc.). We are richer than these other countries too, so … ???

    of all countries with national healthcare, not one has ever tried to repeal it. : good point.
  15. Gearhead's Avatar
    Bush 43 made student loans and medical except from bankruptcy. You can still file for bankruptcy but will still fully owe these debts.
    Obamacare fixed the pre-existing clause but this is under attack.
    With our current tax system, I don't think we can afford Medicare for all but it's possible.
    I saw in an interview, a British doctor was asked what was the difference between him and an American doctor. He replied, "British doctors live in $1m homes, American doctors live in $2m homes". Also, the interviewer made a point that of all countries with national healthcare, not one has ever tried to repeal it.
  16. Spitzbub's Avatar
    Good point, I have a habit of using the two interchangeably. Thanks.
  17. SCI-Nurse's Avatar
    You should change the title to mechanical lifts. Hoyer is a brand name and doesn't make the lifts used at these hotels, which are actually ceiling track lifts.
  18. Spitzbub's Avatar
    You're exactly right, KLD, and I didn't. 17 years later and I've learned that nothing changes without follow-up.
  19. SCI-Nurse's Avatar
    Did you file a complaint with the owner? With the DOJ? Did you contact Access Chicago for advocacy help? This kind of thing continues because too few people follow up with complaints.

  20. Spitzbub's Avatar
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