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rose

Extremely helpful member
Joined
Mar 29, 2008
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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.
 
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Hello Rose...Welcome home! After reading, it sounds as if you had a comprehensive visit with all the doctors.

I am sorry to read that you have trouble with breathing in your sleep. I know you will take the advice of the doctors, and do what is necessary to make yourself some what more comfortable.

I agree, that perhaps after you get to a certain point, and a definitive diagnoses with these doctors, to the underlying cause, you will be able to be taken care of by a qualified doctor, nearby. Perhaps they could even recommend one a little closer. Although I am sure they would be unhappy to lose you as their patient. They usually like to follow things through.

Remember that Doctor M.S. has that wonderful bedside manner in NYC. :wink:
 
Rose,

Yes, welcome home, glad you got some R&R on your camping trip. Did you ever once look around to see if anyone else was looking? That would be something I would be guilty of doing in a situation like that! I bet you had a blast!

Rest up tonight before your drive back on sunday, I wish you the best, always.
Keep me in your prayers as well, dear, I will be riding 12 hrs in a minivan (yuk) with my family for a week of R&R on the beach!
hugs,
brenda
 
Rose,

Wow! What a nice clinic visit! Thanks for posting such a nice experience.

Zaphoon
 
Rose,

I'm happy to here you had a nice camping trip. And you didn't get arrested for indecent exposure!
I agree getting away is so nice and it seems to keep your mind occupied.

It does seem that Hopkins seems to be very on top of things, I guess that's why they are rated # one in the country.
 
Crystal, LOL. Nope, no arrests for me yet. What is so funny is I had the weirdest dream last night that I had to go to prison. And the jail was like individual stalls in a public bathroom in a campground, kind of wet rough cement floors. Everyone was asking me what I was in for, and I said I didn't know (I didn't!) and one person had some sort of pet with them, I think a cat, and then another woman had a giant cockroach that was dressed up in this pink outfit like people put clothes on their dogs! She had it on a leash. And (in my dream) even that didn't freak me out, but then I looked down and there was a big spider on the floor of my "cell" and that did it! I was like, oh no, this isn't working for me, I can't stay in a place where a spider might crawl on me while I'm sleeping .:)... about the indecent exposure, I put that little picture of me as an avatar that was taken while we were canoeing. I had on a tank top with capri jeans. Then had to add the vest (and eventually a sweatshirt) because it was colder than we'd expected. After I posted the avatar, I kept going back in and cropping the picture more and more because there was so much cleavage showing! I was afraid you guys would really think I was canoeing in the all together :cool:

Zaphoon, Yes it was a great visit at the clinic. The atmosphere is friendly, they had out sandwiches and potato salad, cans of soda, bottled water, and were urging us to eat before we got started - actually insisting we eat! No one rushed me, all questions were answered. It was everything I'd hoped it would be.

Brenda, I think by time I'm writing this you'll already be on your way for vacation. I just hope you're relaxing and letting the boys take care of your every whim!

Lovelily, perhaps you and I could make appointments with Dr M.S. on the same day and car pool over to NYC ~ NOT!
 
Hi Rose....I say we just carpool to NYC, and do this as we drive by Dr. M.S. :roll: 8) :x .
 
Thanks Rose,
yes, we left home this morning, meant to leave by 8, finally left at about 930 I think, oh well, it's vacation, no real time schedule!
We drove until we got tired, and of course, I brought the laptop to check the forum and keep up with my homework this week. I haven't quite taught the boys how to wait on me hand and foot, but they're doing ok.
I went swimming with them tonight for about an hour in the hotel pool, and it felt pretty good. The water was warmer than the water in the hot tub, so hopefully I can hit a hot tub when we get to the coast!
keep that fighting spirit!
hugs,
brenda
 
John Hopkins

Hi there!

Glad your trip was a great one! Unfortunately we have to go for a disease like ALS but blessed to have a teaching university hospital with top notch staff.

George's visit was 8:30 a.m. to 7:00 p.m. a year this month and they so had hoped to give us good news but Penn was correct that he has ALS. Hopkins was kind and warm and gave us tons of literature and books to take home. They offered to take over his care but understood the distance would be too much.

I hope you are able to participate in as many studies as possible. George is not a canidate for any due to his low FVC's of 20%. But we are still hopeful!

Your camping trip sounded devine! You go girl! ;)

Patty
 
I'm back (again!)

I'm home, again, and exhausted! My neurologist basically wanted to confirm what they'd found during my clinic visit last week. She was emphatic that I get the second sleep study and swallow study done asap. She wasn't as keen on the AFO for my legs as the PT had been. She said she thought a cane might work better for me, or a combination of both. She wanted to know how I felt about using a cane, and the answer is :-( ... the idea is going to take some getting used to. I think one of my "problems" is that I don't see myself as being at a stage where I need any of this stuff! maybe its my quest to stay in denial as long as possible.

While we were waiting to see the doctor, we were informed that I was to stop back in to the clinic after I finished with the neuro, as they wanted to talk a little more about my breathing test. So, it turns out they've scheduled me for the second week in November to have respiratory function testing done, and then to see the pulmonary specialist and others in the clinic. And, my neuro wants to see me again on that same day too,

Plus, they managed to work in a flu shot for me today. A nurse saw me, said they'd just gotten the vaccine in, and which arm would I like it in ? :cool:

My son was impressed at their efficiency and caring attitude.

Johns Hopkins rocks!

.... now... I'm headed for the sofa a, a nice glass of wine, and a movie or something on TV. ciao
 
Hi Rose,

I am glad that your trip went well and your vacation was good. You look awesome! I understand about the cane, I am sure most do.

please take care
 
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