MIN-102: 1 year (48 week) update

[wilburlois15]

Hi everyone,

Last Thursday I went back to NHNN in London for visit 4. The first thing to say is that nurses Erla and Ming have left and Ana was the nurse for the entire visit. She's not new to NHNN and knew everything about the trial. She also arrives a little later so the visit started at 9am rather than 8am.

After fasting bloods (and urine sample), I had breakfast and filled in the usual forms. Then, because the echocardiogram appointment at UCLH was at 11:40, I went straight to UCLH. After returning, I had lunch in the ward, dosed up on MIN-102, and then went for the MRI scan downstairs. This was all done by 1:30pm.

We then went through the usual routine of tests: 6-minute walk, dynamometry (hip flexor strength) and the balance plate. Finally, they did the neurological examination and the ECG at about 5pm (I learned that the ECG needs to be 3-4 hours after dosing). I left at 6pm and had to wait 45 mins for a taxi home.

In terms of timing, it worked reasonably well. Nothing felt rushed, but neither was I left hanging around for ages with nothing to do. Ana knew what she was doing but because there is only one of her, she needed the specialist, Dr Krishna, to help her do the tests. Erla always used to be worried about doing the walking test as early as possible in the day but the usual corridor seemed quieter at 2:30pm than at 8:30am.

For me, the tests felt easier than last time, especially the balance tests. I am still hopeless at eyes closed, feet together, but eyes closed, feet apart felt a lot more comfortable. In the 6 minute walk test I walked 12 metres further than last time, which is a total of 24 metres further than at the baseline. I can never remember what happened in previous neurological examinations, but it was very clear that my right leg performed better in some tests than my left leg (hot/cold water and tuning fork), but not in every case: in some tests my left leg was better than right (cotton wool sensation for instance). I don't think it has ever been so obviously different.

Anyhow, I am now back home with my new batch of bottles and another date in 24 weeks' time.

Hope you're all doing fine

Angus

[JasonHarnum]

Hi Angus, what is the minimum distance needed to walk in the 6 minute walk test? Also, can one use a cane, walker, or a cannon to achieve that distance?

thanks

[wilburlois15 in reply to JasonHarnum]

There is no minimum distance. It's simply a question of how far you can walk in 6 minutes, up and down a corridor. However, at the screening before the trial, you had to walk something like 120 metres to make sure that you could actually do the walk test.

You can use aids, so long as you use the same aid each time. You can stop as many times as you like. Mine is along a corridor with lots of glass conference rooms so the cannon might be a dangerous solution

It's hard work!

[JasonHarnum in reply to wilburlois15]

Got it, Thanks! Just curious, how many meters were you able to walk in 6 minutes?

[wilburlois15 in reply to JasonHarnum]

This time, 192 metres! It was exhausting. I have poles so I don't lose balance but as a result, I don't stop and it's a very aerobic exercise.

[SongStream in reply to wilburlois15]

You're right about the aerobic benefit. The instructions once again stated you may rest against a wall at any time. I went from 405 meters to 447 meters which is an improvement like those patients that participated in the antioxidant Spain study. Still, we know that some days are better than others which leaves me at uncertainty.

[JasonHarnum in reply to SongStream]

whoa..you walked 1328 feet in 6 minutes! Did you have nitrous to aid your walk?

[SongStream in reply to JasonHarnum]

I had to look up all the uses of nitrous oxide in my internet search : ) Even used for labor pains, but I digress.....

I was worried that I'd perform less because I was just getting back to normal after the fall I experienced. I can't really say why I did better. I thought the corridor measured was longer because you have to walk around it at each end which kinda slows you down before picking up steam again. Funny, now one of the test coordinators thinks I might do 500 next time. Oh, the anxiety. I was always prone to it when test taking : )

Thanks Jason for the compliment. I really appreciate it. I work so hard and some days like I said are better than others. We all have been there. This site is sort of like therapy for me because you all get it.

[JasonHarnum in reply to SongStream]

minus the nitrous oxide, it's a testament to you putting in the work, day after day after day! Onward...500!

[SongStream in reply to JasonHarnum]

Seriously, thank you. When I go to the gym and see people of all fitness levels, it inspires me.

[JasonHarnum in reply to SongStream]

watch this.. youtu.be/dIM7E8e9JKY(Not working as expected?) it will keep you going!

[SongStream in reply to JasonHarnum]

Embrace the suck! That's my motto having AMN. Thanks for the link. I saved it for a thorough view as well as under my inspirational bookmarks. I'd highly recommend others to watch this, too.

(Today, I went 40 minutes on the treadmill with 30 minutes on the fat burner workout (I think this program name is offensive. Are they saying I'm fat?) which involved inclines but only at 1.0 mph. Then I did my thing varying up to 3.0 mph on flat level.. Also had a great workout after.

[Aaron98 in reply to SongStream]

I remember yesterday on the phone you mentioned that you were walking on the treadmill, Steve. How often do you do this, and how far do you go? And how do you do this safely? My wife uses our treadmill every morning, but I don't trust myself on it - too afraid of losing my balance. Thanks!

[SongStream in reply to Aaron98]

Aaron, the treadmills I use have grasp bars on both sides. I also use muscle memory and remember how I walked before using a cane. Sometimes, I alternate without holding on to the bars walking with conviction only for a short period before grasping the handrails again. I don't walk as often as I like (2-3 times a week) because of the fatigue the following day especially after working out. Lately, I've been using the treadmilll more like 20 minutes. Trying to get back to 30 minutes. But now I can add the elliptical with the treadmill to fulfill my 30 minutes of exercise. However, combine that with deep and lengthly stretches, balance exercises and the addition of weight resistance machines., my workout is over 2 hours. The secret, however, is being consistent, otherwise, I'd be back to immobility.

[wilburlois15 in reply to SongStream]

447 metres! Amazing. I can only dream of such distances. A look at the chart in the Spanish antioxidant study confirmed to me that I am very very slow. I'm faster without the walking poles but my balance would also be all over the place...

[JasonHarnum in reply to wilburlois15]

nice work!

[KennyInPA in reply to wilburlois15]

They never revealed to me if I improved at all on my 6 month visit. However on that final minute I put everything I had into, even knocking over the cone, but I hustled! Haha The hallway they have me doing it in is usually fairly busy so I have to maneuver around people and flag them on through. It's funny people will start talking to the coordinator and she has to keep reading the script and they just look at her like hellooo I'm right here..Haha

[SongStream in reply to KennyInPA]

You had me crackin' up! For me, they just have a measurement tape with no cones and the coordinator is talking in another room to make her video which I have already heard. I worry when I see some of the doctors leave their office with a bewildered look when they see the set-up. Fortunately, no one was in my way and I have a way with my cane which I sometimes use in front of me when I see anyone approaching me, like back off! I cannot react in time to prevent falls. Kenny, I asked what my baseline and 6 mo. test results were so I could personally measure my progress and also to challenge myself.

Note: I think what helped me was the fact that being the floor is flat (just like the earth), I envision myself walking on the treadmill. I used to go as high as 3.5 mph but 3.0 is more doable for very brief intervals and what is suggested for walking fitness.

Oh, those trekking poles are awesome and helps my balance astoundingly! They really give you a work out! (Gee, I feel like I make commission when I suggest these.)

I hope you didn't think I thought the earth was really flat. : )

[SongStream in reply to SongStream]

Dang it Kenny. I just busted up laughing in the shower with the reverb of my laughter sounding like a lunatic was on the loose when I visualized you knocking the cone down and hustling during the last minute. Not only was that funny, but folks, let's admit it: We're not the most graceful walkers out there. It's not like we have the grace of swans. I'm so glad I can laugh at myself. : )

[wilburlois15 in reply to KennyInPA]

I've done it 3 times now and each time I've started in a slow and controlled way but into the final minute, it's hard not to go for it, especially when you know where you finished last time.

[SongStream in reply to wilburlois15]

Another belly laugh! I hear you!!! I do the same thing like I was trying out for the Olympic trials and nearing the finish line.

[SongStream]

In some tests my left leg was better than right (cotton wool sensation for instance).

Do they use fabric swatches to test on your skin? If so, my test didn't include it. I noticed there are minor differences in the European and U.S. trials.

[wilburlois15 in reply to SongStream]

Every time I have a neurological exam they seem to do different tests. The only constants, I think, are the hot and cold water and pin prick tests, both of which are better on my right leg than left. This time they did the tuning fork vibration test and the test with cotton wool which involved brushing it over my skin and I had to say when I could feel it. I was surprised because my left leg + foot appeared to be better than the right at that test. I'm pretty sure I've not had the cotton wool test before.

Also this time they seemed to do fewer muscle strength and eye tests than usual. I guess they have certain criteria to fill in the Minoryx forms but several ways to get there.

[SongStream]

Just got a call from Stanford to schedule an MRI which I had presumed is required before my 1 year appointment in October. Any others like to report and what changes they are looking for aside from white matter progression?

[wilburlois15 in reply to SongStream]

I think it's just the usual. A clean MRI is a prerequisite for the trial and of course we need to have an annual MRI anyway. I've had no feedback, which should mean good news.

Do you also have the echocardiogram to monitor the effect of the water retention on the heart?

[SongStream]

I'm sure an echo will follow: I'm sure an echo will follow. : )