rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
Well, I'm back in Jersey, and wanted to share a little about the clinic visit last Tuesday. There was a LOT to take in, and honestly, because we went directly from Hopkins on down to Virginia to do some camping, I have not even opened all of the literature we were given.
The clinic's director is Lora Clawson, (MSN, CRNP) She is an assistant professor of neurology at Hopkins, and is the one that started the Multidisciplinary ALS clinic back in 1999. I met with her first.
I continue to be so impressed with that facility. For example, my breathing difficulties: I've had two distinct different problems, one being the inability to breath out at times - mostly while sleeping. I've questioned a couple of doctors about this and had not really gotten an answer. They would say they knew it was connected to my soft palate being weak, but didn't give any specifics. So, I brought it up again when meeting with Ms Clawson. She nodded that she understood what I was describing, and launched into an explanation, which I don't fully remember, but it had to do with UMN rather than LMN. How when we intake air, if there is weakness, the passage will tend to collapse, so when we exhale, it is closed or partially closed. She said that when people with more advanced cases of MND than I, have are asked to take a deep breath and exhale, that they, as examiners, can actually hear that bump bump bumping of the soft palate that I only feel occasionally right now.
She also said how important it was to them, in tracking how I progress (or hopefully don't progress) for me to share what I notice in my daily life that changes for me. She said that weakness can be felt by the patient way before it can be clinically assessed by a medical professional. Additionally, the physical therapist was even more specific about the perceived weakness versus clinically confirmed weakness. I can't remember the exact percentages he gave me, but it was something like how the patient will notice weakness at a point when there is 25% (or maybe less, I don't remember) denervation of a muscle, but it takes 60% or over that amount for them to be able to tell by examination. Everyone that I met with stressed that I needed to keep track of what I notice, and to tell them, that I was going to know before they did when a new problem was developing or progressing.
This is so different from many experiences here on the forum where a person is weak, knows that they're weak, and have had a doctor just brush their perception aside.
So: the PT did find weakness in my legs, and feels that I would benefit from an ankle foot orthosis. Right now he thinks that I'd only need it when I want to go for a walk, not necessary for around the house, or even short shopping excursions, but that I should be wearing it for any activity that would have me on my feet for extended periods of time, or distances.
Ms Clawson thought it was time for me to have another sleep study done, because she feels I should be using either CPAP or BIPAP at night. She explained that usually those with MND are to use the BIPAP, but because at this time my breathing trouble stems from the closure of my soft palate, rather than respiratory muscle weakness , that it might be better to just keep the airway open with the CPAP. She said that there was no way that my insurance was going to pay for a machine if I didn't get a follow up sleep study done though, and that I should have them let me try both types of devices during it, possibly. This is something my laryngologist has been urging me to do, and I've balked at it... but then even last night I had another one of those killer headaches (from not getting enough air) wake me in the middle of the night,....
I'm also to have another swallow study, and she felt I need to be seen right away by my neurologist. ~ another example here of how great they are at JH. I received a phone call each day after the appointment at the clinic from my neurologist's office, trying to set a time for me to be seen by Dr Sumner. (my phone was off because we were camping). So, when I got the messages, and returned the calls, I found that I was to be seen this Monday! So, I've got to turn around and go back down to Baltimore Sunday night. :neutral:
I was informed of a few trials that I could participate in. Its going to take some thought though, as it requires more frequent visits, and I live so far. I need to make the decision as to whether I want to keep going down there, or possibly attend a clinic that is closer geographically, so I could more easily take part in a study.
All in all. during the clinic visit, I met with the director, an Ot, Pt, social worker from the MDA, a representative from a company that makes orthosis devices, several others came in to explain about ongoing or upcoming trials and studies.
As a post script (got interrupted during typing this) we had a great time camping, we canoed for about 4 hours or so down the Shenandoah River, did a lot of nothing, and made some tasty little meals on the campfire each day. It was so nice not being near an airport or a TV! The first night it could have been something out of a comedy about city slickers! We'd driven down in regular clothes, I had on a dress and Don had on slacks and leather shoes, and there we are in the dark setting up the tent with only one flashlight! I finally was able to get to our fleece lined (brown) crocs, so then we were in black city clothes with fleecy brown crocs on our feet! We got it all done and were going to go buy some firewood, took a look at ourselves and decided that maybe taking a moment to change into some jeans might not be a bad idea LOL.
The clinic's director is Lora Clawson, (MSN, CRNP) She is an assistant professor of neurology at Hopkins, and is the one that started the Multidisciplinary ALS clinic back in 1999. I met with her first.
I continue to be so impressed with that facility. For example, my breathing difficulties: I've had two distinct different problems, one being the inability to breath out at times - mostly while sleeping. I've questioned a couple of doctors about this and had not really gotten an answer. They would say they knew it was connected to my soft palate being weak, but didn't give any specifics. So, I brought it up again when meeting with Ms Clawson. She nodded that she understood what I was describing, and launched into an explanation, which I don't fully remember, but it had to do with UMN rather than LMN. How when we intake air, if there is weakness, the passage will tend to collapse, so when we exhale, it is closed or partially closed. She said that when people with more advanced cases of MND than I, have are asked to take a deep breath and exhale, that they, as examiners, can actually hear that bump bump bumping of the soft palate that I only feel occasionally right now.
She also said how important it was to them, in tracking how I progress (or hopefully don't progress) for me to share what I notice in my daily life that changes for me. She said that weakness can be felt by the patient way before it can be clinically assessed by a medical professional. Additionally, the physical therapist was even more specific about the perceived weakness versus clinically confirmed weakness. I can't remember the exact percentages he gave me, but it was something like how the patient will notice weakness at a point when there is 25% (or maybe less, I don't remember) denervation of a muscle, but it takes 60% or over that amount for them to be able to tell by examination. Everyone that I met with stressed that I needed to keep track of what I notice, and to tell them, that I was going to know before they did when a new problem was developing or progressing.
This is so different from many experiences here on the forum where a person is weak, knows that they're weak, and have had a doctor just brush their perception aside.
So: the PT did find weakness in my legs, and feels that I would benefit from an ankle foot orthosis. Right now he thinks that I'd only need it when I want to go for a walk, not necessary for around the house, or even short shopping excursions, but that I should be wearing it for any activity that would have me on my feet for extended periods of time, or distances.
Ms Clawson thought it was time for me to have another sleep study done, because she feels I should be using either CPAP or BIPAP at night. She explained that usually those with MND are to use the BIPAP, but because at this time my breathing trouble stems from the closure of my soft palate, rather than respiratory muscle weakness , that it might be better to just keep the airway open with the CPAP. She said that there was no way that my insurance was going to pay for a machine if I didn't get a follow up sleep study done though, and that I should have them let me try both types of devices during it, possibly. This is something my laryngologist has been urging me to do, and I've balked at it... but then even last night I had another one of those killer headaches (from not getting enough air) wake me in the middle of the night,....
I'm also to have another swallow study, and she felt I need to be seen right away by my neurologist. ~ another example here of how great they are at JH. I received a phone call each day after the appointment at the clinic from my neurologist's office, trying to set a time for me to be seen by Dr Sumner. (my phone was off because we were camping). So, when I got the messages, and returned the calls, I found that I was to be seen this Monday! So, I've got to turn around and go back down to Baltimore Sunday night. :neutral:
I was informed of a few trials that I could participate in. Its going to take some thought though, as it requires more frequent visits, and I live so far. I need to make the decision as to whether I want to keep going down there, or possibly attend a clinic that is closer geographically, so I could more easily take part in a study.
All in all. during the clinic visit, I met with the director, an Ot, Pt, social worker from the MDA, a representative from a company that makes orthosis devices, several others came in to explain about ongoing or upcoming trials and studies.
As a post script (got interrupted during typing this) we had a great time camping, we canoed for about 4 hours or so down the Shenandoah River, did a lot of nothing, and made some tasty little meals on the campfire each day. It was so nice not being near an airport or a TV! The first night it could have been something out of a comedy about city slickers! We'd driven down in regular clothes, I had on a dress and Don had on slacks and leather shoes, and there we are in the dark setting up the tent with only one flashlight! I finally was able to get to our fleece lined (brown) crocs, so then we were in black city clothes with fleecy brown crocs on our feet! We got it all done and were going to go buy some firewood, took a look at ourselves and decided that maybe taking a moment to change into some jeans might not be a bad idea LOL.
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