Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

@oldkarl

Peach, the real downer here is that the closest real hospital with pain management, etc, is almost a hundred miles away. And we have a lot of speeders here, not real tourists, but folks who think they can drive 80 mph along the coast on roads built for 35 mph. Then they pile up on a 15 mph curve, at one of our most beautiful spots, and complain about the bad roads and slow drivers. If they want to drive 80, they should go over to I-5 which runs from Vancouver BC to San Diego.

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You would probably get along with my wife @marylou705…☺ She’s one of those gregarious people persons and I’m more of a hermit. Toastmasters got me out of my shell (sort of). I definitely see value of groups with a common goal – Mayo Connect has pulled me back out of my shell along with the Minnesota Neuropathy Association (http://www.neuropathy-mn.org). I agree with you – it is fun to be in with a bunch of people – just not doing exercise (for me!). I love bus trips with the old folks through community ed – took my first one when we were in our 50s and I enjoy it more now that we are in our 70s.

Hope you have a great weekend…Happy Friday!
John

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@oldkarl

Peach, the real downer here is that the closest real hospital with pain management, etc, is almost a hundred miles away. And we have a lot of speeders here, not real tourists, but folks who think they can drive 80 mph along the coast on roads built for 35 mph. Then they pile up on a 15 mph curve, at one of our most beautiful spots, and complain about the bad roads and slow drivers. If they want to drive 80, they should go over to I-5 which runs from Vancouver BC to San Diego.

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Hi.@johnbishop has anyone.ever heard.of ketamine?  Website is klarisana.comIt sounds very good but expensive.  I am waiting to get a call back from someone.

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@jimhd

I’ve been having a number of tests done lately for more than one issue. The genetic analysis reported that Huntington’s Disease is very unlikely. I haven’t discussed it with a doctor yet. My anxiety level dropped several notches when I saw the report. I like that most of my test results get posted online, so I can see them much sooner than by the USPS. I don’t know why I was anemic, but the doctor had me start taking iron, and the hemoglobin levels went up to normal. I’m glad for that, but I’d still like to know why it dropped in the first place.

The speech therapist has given me some tongue exercises – I never thought I’d have to exercise my tongue – and I’ll see the ENT doctor for a follow-up to see if they’ve helped. If they don’t, I’ll be changing to soft foods some day, and the next step after that is a feeding tube. I hope that’s many years in the future.

I’ve had buzzing in my head, accompanied by dizziness, for a number of years, lasting for a very short time, and happening totally at random, out of the blue. Last Tuesday, August 15, it started at around 5 pm, and went continuously for a week, then tapered off to only most of the time. I have an appointment with a doctor next week to begin the search for a cause. For the first time, nausea has been part of the mix. Yuck!

Peripheral neuropathy – since the spinal cord stimulator implant, the pain has gone down to a 1 or 2, with spikes every once in awhile up to 6. Overall, it’s made a huge improvement in the pain. I tapered off Cymbalta, which the pain specialist thought might help the pain. I’m not sure that it did anything at all. I’ve also tapered down on MScontin from 30mg twice a day to 15mg twice a day. I think I’ll talk with the pain specialist about that because I feel like I may need just a little more, like 15 and 30. I’ve had the rep from the stimulator company adjust the settings twice, and he’s available to do that anytime I call. My therapist recommended that I not taper any more right now because of the level of my depression. He’s concerned that if the pain returns, it would probably have an effect on the depression, which I don’t need right now. We’ve been working on some tough issues that have affected my life since I was a teenager, and I find that it’s a really long time from one Thursday to the next, when I meet with him.

The ENT doctor recommended that my neurologist get involved in the swallowing issue, and I have an appointment with him next week. It takes me a long time to eat a meal, and sometimes I get tired of eating. At lunch today, I could only eat one of the two small brownies on the plate. I Never turn down dessert, especially if it’s chocolate. I just wanted to be done with eating. I take a small bite of food, chew on it awhile, then prepare to swallow it, and then after the food finally gets into the esophagus, I drink a sip of liquid to help it keep going. After it feels like it’s cleared my esophagus, I take the next bite, and start the process again. The speech therapist is concerned that I won’t eat enough to maintain my weight, which is in the normal range, but close to underweight. It takes me back to my college days, when I tried everything to gain weight. I overcame that problem over the years, and in 2015, I went on a diet, which meant cutting back on desserts and stopping the snacks, and lost 60 lbs in 6 months. That was faster than I had anticipated. Now, I work to stay steady. If I got very sick, and lost much weight, it could become a problem.

Anyway, that’s what I’ve been up to the past few months.

Jim

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Hi Jim @jimhd

We so appreciate the update. I’m glad that Huntington’s Disease was found to be an unlikely diagnosis, that is good news. I hope your neurologist visit goes well, they are good at figuring out some of the tough symptoms.

I’ve had a lot of speech therapy for swallowing and speech volume (paralyzed vocal cord), but the tongue exercises are new to me. Can you describe what they are like?

Teresa

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@grahamjane

I’m Jane, 72 years old; active except when I have these awful pain attacks. Cannot figure out what causes them. So tired of going from one doctor to another, taking tramadol 50 mg. when needed but doesn’t help much. For past 2 weeks have had terrible leg and hip pain on left side and right elbow pain. Had an MRI and spinal surgeon said it showed arthritis and some spinal stenosis and suggested I see an ortho surgeon about hip. I cannot imagine myself giving up and just sitting around all day…hope I can find some answers/support on this blog. Thanks so much.

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Hello @grahamjane

I see that you are relatively new to Mayo Connect – thanks for your post. I’m sorry to hear about your pain problem. Pain can be exhausting, can’t it?

Physical therapy often helps with pain. Have you had any physical therapy yet?

Teresa

REPLY
@oldkarl

Peach, the real downer here is that the closest real hospital with pain management, etc, is almost a hundred miles away. And we have a lot of speeders here, not real tourists, but folks who think they can drive 80 mph along the coast on roads built for 35 mph. Then they pile up on a 15 mph curve, at one of our most beautiful spots, and complain about the bad roads and slow drivers. If they want to drive 80, they should go over to I-5 which runs from Vancouver BC to San Diego.

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My Medigap policy is through AARP/United Health Care and they offer something similar – it provides 50% off a gym membership. It really is a nice benefit. When you sign up for your Medicare supplement plan it is good to look into what other member benefits they offer.

Teresa

REPLY
@oldkarl

Peach, the real downer here is that the closest real hospital with pain management, etc, is almost a hundred miles away. And we have a lot of speeders here, not real tourists, but folks who think they can drive 80 mph along the coast on roads built for 35 mph. Then they pile up on a 15 mph curve, at one of our most beautiful spots, and complain about the bad roads and slow drivers. If they want to drive 80, they should go over to I-5 which runs from Vancouver BC to San Diego.

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Hi @mikween, my only knowledge of the drug ketamine is that it is highly addictive and has been used as an animal tranquilizer. The site you referenced looks pretty promising to help with chronic pain, PTSD and depression. Mayo Clinic has some research information on it’s use here:

http://www.mayoclinic.org/medical-professionals/clinical-updates/psychiatry-psychology/ketamine-research-focuses-on-mechanisms-of-action-and-biomarker-development

https://newsnetwork.mayoclinic.org/discussion/anesthetic-for-depression-mayo-clinic-study-finds-low-dose-ketamine-effective/

Let us know if you decide to go with the treatment. It does sound promising.

John

REPLY
@oldkarl

Peach, the real downer here is that the closest real hospital with pain management, etc, is almost a hundred miles away. And we have a lot of speeders here, not real tourists, but folks who think they can drive 80 mph along the coast on roads built for 35 mph. Then they pile up on a 15 mph curve, at one of our most beautiful spots, and complain about the bad roads and slow drivers. If they want to drive 80, they should go over to I-5 which runs from Vancouver BC to San Diego.

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My only knowledge about ketamine comes from having worked in animal shelters and vet clinics. It was used there to tranquilize animals before they were put to sleep, or, at higher dosages, to euthanize them. Sounds like heavy-duty stuff.

Hazel (@hazelblumberg)

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@virtuous69

@artdcsping, wish I new about plasma replacement therapy some ten years ago as I ended up having hip replacements so now I’m in the spinal stenosis stage where my spine is closing and my legs are giving out from underneath me. I’m only 69 and I have a lot of life left but as the spinal problems increase I’m unable to bend over or even do the minimum in keeping up a house so I’d like to read up about this replacement therapyunless it’s too late for me .plasma therapy wonder if that would work for the degenerated discs in my lower back?

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Hi @virtuous and hello again to @bellavista and @grahamjane and of course @johnbishop. I just met with my friend who has had the procedure on her hip and it is also called Plasma Rich Platelets. They withdraw blood form you…. all of the platelets are removed and replaced before reintroducing them to the site. I just wanted to clarify my name for the process. Sorry for not getting it completely correct the first. time.

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@grahamjane

I’m Jane, 72 years old; active except when I have these awful pain attacks. Cannot figure out what causes them. So tired of going from one doctor to another, taking tramadol 50 mg. when needed but doesn’t help much. For past 2 weeks have had terrible leg and hip pain on left side and right elbow pain. Had an MRI and spinal surgeon said it showed arthritis and some spinal stenosis and suggested I see an ortho surgeon about hip. I cannot imagine myself giving up and just sitting around all day…hope I can find some answers/support on this blog. Thanks so much.

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Hi, and welcome, @grahamjane. My wife has been having a lot of pain in her hip. The ortho is saying that the pain may be coming from her back, so she’s going to have an MRI and will see the back doctor. Have you seen a rheumatologist or a neurologist or a pain specialist? These are some who have helped me on this pain journey. I hope you find diagnoses soon so you can get appropriate treatment.

Jim

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@virtuous69

@artdcsping, wish I new about plasma replacement therapy some ten years ago as I ended up having hip replacements so now I’m in the spinal stenosis stage where my spine is closing and my legs are giving out from underneath me. I’m only 69 and I have a lot of life left but as the spinal problems increase I’m unable to bend over or even do the minimum in keeping up a house so I’d like to read up about this replacement therapyunless it’s too late for me .plasma therapy wonder if that would work for the degenerated discs in my lower back?

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Thanks Chris! I wasn’t sure but found a good explaination here:
http://orthoinfo.aaos.org/topic.cfm?topic=A00648

John

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@bellavista

I am new to the chronic pain. I began having hip pain two years ago and found out I have scoliosis. After physical therapy I improved for over a year. It did not go away but stretching occasionally helped and I functioned well including playing golf. Now my pain is in my lower back and mostly in my legs and left trochanter. I am currently back in PT and hoping that helps again, but I am not as hopeful this time. I am a nurse and follow several women who have similar problems and they are going through injections and misery. I am hoping I can find some other information not only for myself but for these ladies.

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Hi @bellavista. One treatment that has changed my life is a spinal cord stimulator implant. I have more than 80% relief.

Jim

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@jimhd

I’ve been having a number of tests done lately for more than one issue. The genetic analysis reported that Huntington’s Disease is very unlikely. I haven’t discussed it with a doctor yet. My anxiety level dropped several notches when I saw the report. I like that most of my test results get posted online, so I can see them much sooner than by the USPS. I don’t know why I was anemic, but the doctor had me start taking iron, and the hemoglobin levels went up to normal. I’m glad for that, but I’d still like to know why it dropped in the first place.

The speech therapist has given me some tongue exercises – I never thought I’d have to exercise my tongue – and I’ll see the ENT doctor for a follow-up to see if they’ve helped. If they don’t, I’ll be changing to soft foods some day, and the next step after that is a feeding tube. I hope that’s many years in the future.

I’ve had buzzing in my head, accompanied by dizziness, for a number of years, lasting for a very short time, and happening totally at random, out of the blue. Last Tuesday, August 15, it started at around 5 pm, and went continuously for a week, then tapered off to only most of the time. I have an appointment with a doctor next week to begin the search for a cause. For the first time, nausea has been part of the mix. Yuck!

Peripheral neuropathy – since the spinal cord stimulator implant, the pain has gone down to a 1 or 2, with spikes every once in awhile up to 6. Overall, it’s made a huge improvement in the pain. I tapered off Cymbalta, which the pain specialist thought might help the pain. I’m not sure that it did anything at all. I’ve also tapered down on MScontin from 30mg twice a day to 15mg twice a day. I think I’ll talk with the pain specialist about that because I feel like I may need just a little more, like 15 and 30. I’ve had the rep from the stimulator company adjust the settings twice, and he’s available to do that anytime I call. My therapist recommended that I not taper any more right now because of the level of my depression. He’s concerned that if the pain returns, it would probably have an effect on the depression, which I don’t need right now. We’ve been working on some tough issues that have affected my life since I was a teenager, and I find that it’s a really long time from one Thursday to the next, when I meet with him.

The ENT doctor recommended that my neurologist get involved in the swallowing issue, and I have an appointment with him next week. It takes me a long time to eat a meal, and sometimes I get tired of eating. At lunch today, I could only eat one of the two small brownies on the plate. I Never turn down dessert, especially if it’s chocolate. I just wanted to be done with eating. I take a small bite of food, chew on it awhile, then prepare to swallow it, and then after the food finally gets into the esophagus, I drink a sip of liquid to help it keep going. After it feels like it’s cleared my esophagus, I take the next bite, and start the process again. The speech therapist is concerned that I won’t eat enough to maintain my weight, which is in the normal range, but close to underweight. It takes me back to my college days, when I tried everything to gain weight. I overcame that problem over the years, and in 2015, I went on a diet, which meant cutting back on desserts and stopping the snacks, and lost 60 lbs in 6 months. That was faster than I had anticipated. Now, I work to stay steady. If I got very sick, and lost much weight, it could become a problem.

Anyway, that’s what I’ve been up to the past few months.

Jim

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@hopeful33250

Masako exercise is to stick out your tongue and swallow, maintaining a neutral head position. The second one is to press your tongue against the roof of your mouth, and push for 5 seconds. The third one is to tuck your chin and tighten all of the muscles in your throat and mouth, and swallow your saliva.

So far, these are the ones I do multiple times a day.

Jim

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@jimhd

I’ve been having a number of tests done lately for more than one issue. The genetic analysis reported that Huntington’s Disease is very unlikely. I haven’t discussed it with a doctor yet. My anxiety level dropped several notches when I saw the report. I like that most of my test results get posted online, so I can see them much sooner than by the USPS. I don’t know why I was anemic, but the doctor had me start taking iron, and the hemoglobin levels went up to normal. I’m glad for that, but I’d still like to know why it dropped in the first place.

The speech therapist has given me some tongue exercises – I never thought I’d have to exercise my tongue – and I’ll see the ENT doctor for a follow-up to see if they’ve helped. If they don’t, I’ll be changing to soft foods some day, and the next step after that is a feeding tube. I hope that’s many years in the future.

I’ve had buzzing in my head, accompanied by dizziness, for a number of years, lasting for a very short time, and happening totally at random, out of the blue. Last Tuesday, August 15, it started at around 5 pm, and went continuously for a week, then tapered off to only most of the time. I have an appointment with a doctor next week to begin the search for a cause. For the first time, nausea has been part of the mix. Yuck!

Peripheral neuropathy – since the spinal cord stimulator implant, the pain has gone down to a 1 or 2, with spikes every once in awhile up to 6. Overall, it’s made a huge improvement in the pain. I tapered off Cymbalta, which the pain specialist thought might help the pain. I’m not sure that it did anything at all. I’ve also tapered down on MScontin from 30mg twice a day to 15mg twice a day. I think I’ll talk with the pain specialist about that because I feel like I may need just a little more, like 15 and 30. I’ve had the rep from the stimulator company adjust the settings twice, and he’s available to do that anytime I call. My therapist recommended that I not taper any more right now because of the level of my depression. He’s concerned that if the pain returns, it would probably have an effect on the depression, which I don’t need right now. We’ve been working on some tough issues that have affected my life since I was a teenager, and I find that it’s a really long time from one Thursday to the next, when I meet with him.

The ENT doctor recommended that my neurologist get involved in the swallowing issue, and I have an appointment with him next week. It takes me a long time to eat a meal, and sometimes I get tired of eating. At lunch today, I could only eat one of the two small brownies on the plate. I Never turn down dessert, especially if it’s chocolate. I just wanted to be done with eating. I take a small bite of food, chew on it awhile, then prepare to swallow it, and then after the food finally gets into the esophagus, I drink a sip of liquid to help it keep going. After it feels like it’s cleared my esophagus, I take the next bite, and start the process again. The speech therapist is concerned that I won’t eat enough to maintain my weight, which is in the normal range, but close to underweight. It takes me back to my college days, when I tried everything to gain weight. I overcame that problem over the years, and in 2015, I went on a diet, which meant cutting back on desserts and stopping the snacks, and lost 60 lbs in 6 months. That was faster than I had anticipated. Now, I work to stay steady. If I got very sick, and lost much weight, it could become a problem.

Anyway, that’s what I’ve been up to the past few months.

Jim

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Thanks, Jim, @jimhd

I’ll give that a try – the first one sounds a bit tricky – may take some practice. I appreciate your sharing these exercises.

Teresa

REPLY
@jimhd

I’ve been having a number of tests done lately for more than one issue. The genetic analysis reported that Huntington’s Disease is very unlikely. I haven’t discussed it with a doctor yet. My anxiety level dropped several notches when I saw the report. I like that most of my test results get posted online, so I can see them much sooner than by the USPS. I don’t know why I was anemic, but the doctor had me start taking iron, and the hemoglobin levels went up to normal. I’m glad for that, but I’d still like to know why it dropped in the first place.

The speech therapist has given me some tongue exercises – I never thought I’d have to exercise my tongue – and I’ll see the ENT doctor for a follow-up to see if they’ve helped. If they don’t, I’ll be changing to soft foods some day, and the next step after that is a feeding tube. I hope that’s many years in the future.

I’ve had buzzing in my head, accompanied by dizziness, for a number of years, lasting for a very short time, and happening totally at random, out of the blue. Last Tuesday, August 15, it started at around 5 pm, and went continuously for a week, then tapered off to only most of the time. I have an appointment with a doctor next week to begin the search for a cause. For the first time, nausea has been part of the mix. Yuck!

Peripheral neuropathy – since the spinal cord stimulator implant, the pain has gone down to a 1 or 2, with spikes every once in awhile up to 6. Overall, it’s made a huge improvement in the pain. I tapered off Cymbalta, which the pain specialist thought might help the pain. I’m not sure that it did anything at all. I’ve also tapered down on MScontin from 30mg twice a day to 15mg twice a day. I think I’ll talk with the pain specialist about that because I feel like I may need just a little more, like 15 and 30. I’ve had the rep from the stimulator company adjust the settings twice, and he’s available to do that anytime I call. My therapist recommended that I not taper any more right now because of the level of my depression. He’s concerned that if the pain returns, it would probably have an effect on the depression, which I don’t need right now. We’ve been working on some tough issues that have affected my life since I was a teenager, and I find that it’s a really long time from one Thursday to the next, when I meet with him.

The ENT doctor recommended that my neurologist get involved in the swallowing issue, and I have an appointment with him next week. It takes me a long time to eat a meal, and sometimes I get tired of eating. At lunch today, I could only eat one of the two small brownies on the plate. I Never turn down dessert, especially if it’s chocolate. I just wanted to be done with eating. I take a small bite of food, chew on it awhile, then prepare to swallow it, and then after the food finally gets into the esophagus, I drink a sip of liquid to help it keep going. After it feels like it’s cleared my esophagus, I take the next bite, and start the process again. The speech therapist is concerned that I won’t eat enough to maintain my weight, which is in the normal range, but close to underweight. It takes me back to my college days, when I tried everything to gain weight. I overcame that problem over the years, and in 2015, I went on a diet, which meant cutting back on desserts and stopping the snacks, and lost 60 lbs in 6 months. That was faster than I had anticipated. Now, I work to stay steady. If I got very sick, and lost much weight, it could become a problem.

Anyway, that’s what I’ve been up to the past few months.

Jim

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help again. i now have over 40 mayo clinic gmails in less than 18 hours. guess i will have to stop using this site. to bad.

REPLY
@jimhd

I’ve been having a number of tests done lately for more than one issue. The genetic analysis reported that Huntington’s Disease is very unlikely. I haven’t discussed it with a doctor yet. My anxiety level dropped several notches when I saw the report. I like that most of my test results get posted online, so I can see them much sooner than by the USPS. I don’t know why I was anemic, but the doctor had me start taking iron, and the hemoglobin levels went up to normal. I’m glad for that, but I’d still like to know why it dropped in the first place.

The speech therapist has given me some tongue exercises – I never thought I’d have to exercise my tongue – and I’ll see the ENT doctor for a follow-up to see if they’ve helped. If they don’t, I’ll be changing to soft foods some day, and the next step after that is a feeding tube. I hope that’s many years in the future.

I’ve had buzzing in my head, accompanied by dizziness, for a number of years, lasting for a very short time, and happening totally at random, out of the blue. Last Tuesday, August 15, it started at around 5 pm, and went continuously for a week, then tapered off to only most of the time. I have an appointment with a doctor next week to begin the search for a cause. For the first time, nausea has been part of the mix. Yuck!

Peripheral neuropathy – since the spinal cord stimulator implant, the pain has gone down to a 1 or 2, with spikes every once in awhile up to 6. Overall, it’s made a huge improvement in the pain. I tapered off Cymbalta, which the pain specialist thought might help the pain. I’m not sure that it did anything at all. I’ve also tapered down on MScontin from 30mg twice a day to 15mg twice a day. I think I’ll talk with the pain specialist about that because I feel like I may need just a little more, like 15 and 30. I’ve had the rep from the stimulator company adjust the settings twice, and he’s available to do that anytime I call. My therapist recommended that I not taper any more right now because of the level of my depression. He’s concerned that if the pain returns, it would probably have an effect on the depression, which I don’t need right now. We’ve been working on some tough issues that have affected my life since I was a teenager, and I find that it’s a really long time from one Thursday to the next, when I meet with him.

The ENT doctor recommended that my neurologist get involved in the swallowing issue, and I have an appointment with him next week. It takes me a long time to eat a meal, and sometimes I get tired of eating. At lunch today, I could only eat one of the two small brownies on the plate. I Never turn down dessert, especially if it’s chocolate. I just wanted to be done with eating. I take a small bite of food, chew on it awhile, then prepare to swallow it, and then after the food finally gets into the esophagus, I drink a sip of liquid to help it keep going. After it feels like it’s cleared my esophagus, I take the next bite, and start the process again. The speech therapist is concerned that I won’t eat enough to maintain my weight, which is in the normal range, but close to underweight. It takes me back to my college days, when I tried everything to gain weight. I overcame that problem over the years, and in 2015, I went on a diet, which meant cutting back on desserts and stopping the snacks, and lost 60 lbs in 6 months. That was faster than I had anticipated. Now, I work to stay steady. If I got very sick, and lost much weight, it could become a problem.

Anyway, that’s what I’ve been up to the past few months.

Jim

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Teresa, for the Masako, sometimes I can only go as far as holding the tip of my tongue between my teeth.

Jim

REPLY
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