Tagged: undiagnosed but making progress
10.15.2015 at 12:32 am #3584KLCBLOGSParticipant
Hi everyone. I have been struggling with food getting caught in my throat for nearly 2 years now. I have no diagnosis and was just wondering whether anyone else is in the same/similar situation?
I was thinking we could share some tips here too. I was malnourished for a very long time but have managed to reach a healthier weight now.
My biggest tip, is to get onto a nutritional supplement drink that you can use as a sole source of nutrition. I was on a high energy one – fortisip by Nutricia. By drinking 4-6 of these a day, i slowly gained weight over the months.
I’ve recently introduced baby food into my diet and find i tolerate the mashed oats with apple by Heinz the best. I’ve also been trying out various soups and mashed potato.
I find it also helps to tackle eating only when i feel more up to it, both physically and mentally. I eat small serves, always have a hot tea or water close by and eat alone. Creating an environment that makes you less anxious/stressed, will help you better manage the challenges that a meal creates.
I look forward to interacting with you all. Remember, every day with this struggle is different. Treat yourself kindly. You’re doing the best you can!
~Karly.02.10.2016 at 10:47 am #3905drogersslpParticipant
When you say you have “no diagnosis”, do you mean that you have been evaluated and that there is no known reason for your swallowing problem? If so, by whom were you evaluated? A doctor? Speech-Language Pathologist? Would you be willing to share any diagnostic procedures you underwent?02.13.2016 at 12:27 pm #3908ClarkTaylorParticipant
30 years ago I was hospitalized and tested for just about every affliction that might cause a swallowing disorder (i.e. myasthemia gravis, stroke, Parkinson and the list goes on….no diagnosis. Back then, the doctors simply gave up; when we inquired about going to Johns Hopkins they said, ‘don’t come; we have beds of individuals with this same problem and we just don’t know…” No real trained speech pathologists for the problem then and the iced water on swabs were ridiculous in hindsight. Western medicines sort of wrote me off so I went to an acupuncturist and began swallowing in 6 months and the feeding tube removed. I used swallowing strategies to maintain and was reasonable about the types of foods (no nuts, no dry breads, thick hamburgers, etc.) and I could slowly and concentrating handle foods. Its been 30 years and I was hospitalized for pneumonia last summer and my swallowing shut down. The tests convinced doctors that I was a silence aspirator so back to the feeding tube and depressing ordeal. I am currently back in Santa Fe to a scalp acupuncturist and swallowing is improving. Soups and pureed foods go down pretty well. I do the exercises listed on the website herein and highly recommend you find a speech therapist who specializes in swallowing disorders. I still have the feeding tube and watch my weight…I’m a big guy…6’2″ 210 (now 175 lbs. but maintaining). I miss the socializing and also share the isolation that is often mentioned in these posts. Incidentally, I met a 45 ish year old lady who had spine surgery at Mayo that left here without ability to swallow. After a long road back from her ordeal and the swallowing problem, feeding tube, etc….she found the same acupuncturist (scalp)…and I ran into her in there….she shared her story and participated in a documentary. The scalp acupuncturist has helped Parkinson patients, has had successes with MS patients (I met one there too and his story was riveting), and others. This is not an advertisement. I just have walked this road and still keep going …. I understand.
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