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My speech problem
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cindigal posted:
I had an accident that landed in the hospital last year. My speech was impaired along with other things. I had a speech therapist while i was oin the hospital. I was discharged and wanted to seek a therapist. I get SSDI every month and that covers my bills. I dont have medicare because I have to wait 2 years till i get it. I don't qualify for medicaid because I don't fall between the "brackets" they allow. What's wrong with this system..!! . And please, DONT even suggest go to any Community resource or govt or state agency to get help. I had so many people tell me go there..or there. My speech.....is not any better since I left the hospital. That was July. They predict that any speech patient will recover by 6 months. My sister would call me and will tell me that I speak better than before.. I don't believe it, if that's the case.....I can not talk at all sometimes and the words are so jumbled. What can I do for myself to make the speech improve. If anyone can suggest any thing that would help me, it would be greatly appreciated...

Thank you
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IHadAStrokeAge44 responded:
We are on our own. Really. The "government" doesn't work any more. Doctors care more about being sued. Police aren't required to protect anyone, etc.

You will need to read books by stroke survivors and copy what they did. A lot of people devised their own therapies. I had to invent therapies to improve return of sensation because the rehab hospital doesn't address that and there is even very little research on the subject of restoration of temperature sensation. Doctors know very little about it. I am sure more is known about speech, but like you have experienced, no one really cares anymore if someone falls through the cracks. I didn't get any insurance coverage because the people running MediCal are ignoramuses who can't read their own manual. After a stroke I didn't have energy to fight them in an "appeal". I don't know how our society expects handicapped people to function if they have to expend all of their energy and support on fighting with people who get a thrill out of their power to deny services.

I read a story about a woman who did her own speech therapy for the same reasons you mention. She recovered. I wish I could find that now so I could give you the link. If I come across it I will respond again. In the meantime, know that there ARE stories out there and maybe you can find them on the internet and copy their methods.
 
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Allihies replied to IHadAStrokeAge44's response:
No, Government does not care and this whether in the US or in Europe. To say that doctors care is also incorrect. Doctors may care in some theoretical sense but when it comes to the everyday practise of medicine, they don't.
This issue is too complex, too rare and too expensive to treat to impinge greatly on the minds of our doctors. Neurologists now practise in highly specialised areas and, almost by accident, will one come across a Neurologist who has enough time, energy or interest in thalamic pain syndrome to be of any use.
I say this having suffered a serious stroke in 2004 at age 44, triggered by chronic atrial fibrillation, which scarred my thalamus and which has left the entire of the right side of my body suffering from the worst kind of pain imaginable. On any scale of 'pain', the best I ever felt was a score of 6.5 / 7 out of 10, pain generally being somewhere of the order of 7 to 8 out of 10 and any knowledge I obtained was derived from constant online research The only treatment ever offered was drugs drugs and more drugs.
I suffered a second stroke almost 2 years ago, which again struck my thalamus, on the exact same site, worsening the scarring, once again caused by a bout of atrial fibrillation, which has significantly worsened my pain levels and left me in a situation where my pain levels are constantly at or close to 9. This despite being on v strong opoids. Again, I have beaten a path to Neurologists' doors but to no avail.
The only options open to me, that I see, are that an implanted electronic device be placed across the pathway of pain as it radiates out from the thalamus but, once again, the difficulty is persuading any Neurologist that this might be possible.

Greg Casey


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