PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

Kim, it is really wonderful to see your post. I am very glad to hear that progression still remains slow. What great news!

I am also very sorry to hear that your pain issues persist.

Steve
 
Steve, I'm my own worst enemy when it comes to pain. I do things I've been warned not to do.

My neurologist is trying something different for the pain. Combination of injections and topical cream containing seven ingredients, one of which is Ketamine. I'm still also being used by Mayo as a lab rat for EMGs and blood draws but I'm no longer going to clinic visits. I go four times a year.
 
Hi all, Iam a day late but so be it. I always have trouble here because it says it can't reach me because my email address is wrong, but funny all my bills arrive every month no problem, funny how that is.
 
Well, I’m also a day late but did want to say hi. Sitting on the front porch watching the bees, butterflies and birds enjoying their spring.

So this week I had my latest zoom call with my neurologist, and he thinks there is a good chance I could be one of the rare ones that would fall into the PMA category. He is like most specialists these days that considers it, along with its UMN counterpart PLS, to all be part of the MND spectrum.

However, he did say that while most of his patients with LMN dominant symptoms progress similarly to other ALS pALS, he has had a case like mine that progressed very slow. He also said he knew of other PMA cases from his colleagues that also had a very slow progression. All I can do is hope that it stays slow, as with Nikki and some of our other members.
 
Another one day late. Looking forward to a visit from my NY daughter and family on Saturday. My grandson got into The Bronx HS of Science, so we are quite proud of him.

Ed
 
Thanks KevinM, autumn/winter in Auckland, New Zealand, is quite mild, we don't get snow, and average high of 14 celsius (57 fahrenheit) and average low of 8 celsium (46 fahrenheit).

Decided to go down to 3 days a week of work from May and taking a 7 week UK/Europe holiday from mid May with my husband, and one daughter is joining us part way through. While I am pretty mobile, I have lost muscle mass and strength in the last few months so it will be a different trip to what I was doing pre-MND when I travelled to Europe 2-3 times a year for work. Going to start my riluzole this afternoon.

Trying to understand what I can do from a dietary and vitamin/supplement perspective. Looking at research papers, if anyone knows of a good up-to-date summary I'd appreciate it. Seems to be some possibilities including probiotics.
 
Greetings, all.
We had some very Spring-like weather with daffodils and hyacinths blooming. It was snowing this morning. :unsure:

We had a good visit with my sister and her family. It's nice that they are willing to travel here.

Using the BiPAP during the day has been ok. I don't like the implications of needing it more, but I'm glad it is available.

Take care.
 
Wow, Bill. Some wild weather in the northeast recently. Great to hear you had a nice visit with your family.

Stay strong and optimistic as always Bill. I and many others always enjoy hearing from you.
 
Hello
Spent 10 days in Georgia visiting friends. I used to live there so i saw a bunch of old coworkers, it was nice but also a bit frustrating because i mostly just listened to the group conversations as i could not get a word in with my app. Had a fall on some steps in a garden we were visiting which gave me a melt down. Over it now though because i was at the clinic on Monday and my leg strength is good, i do have a bit of foot drop on the left which only happens when i am tired. I was when i fell.

Switched to a nasal mask on my bipap and last night for the first time i made it through the night using it. Only problem with it now is i still wake up with belly gas.

Had snow on Monday but it is gone now.
 
I continue along about the same. I have had a few health issues, but am dealing with those.

Yesterday I was able to go on my first real wheelchair ride this year in our town (I rode quite a bit during our vacation to Utah). It was great to be out and see the snow finally starting to melt.

We have had a continuous series of storms pass through over the last 3 weeks since we returned from Utah. Officially, February is typically our snowiest month. This year, we had much more snow in March. I lost track, but probably around 3 feet of snow.

Snow has continued to fall up until 3 days ago. We have had some brutally cold temperatures for this time of year. A week ago, the coldest place in Colorado was 35 below zero (F). That is about -37 in C. Locally, we have had temperatures well below zero.

All that nasty weather has really interfered with my attempts to get out on wheelchair rides!

Our motorhome is still in the shop waiting for parts to make it fully operational again. We hope to get it back by the end of the week so we can finalize our plans for some upcoming trips.

Steve
 
Checking in as well. Continue the slow weakening but still doing okay. I've got to learn not to overdo things, because it takes a lot longer to recover.

Steve, I can’t comprehend that amount of snow and freezing temperatures the past month or so. Wow.

You haven’t yet described the newest problems with the motorhome. Love to hear about it. One good thing I guess is that with it being in the shop for so long you save on storage fees. This sounds like a much quicker fix than last year.
 
Kevin, I have been unsuccessful in adding a post to the thread about our trip to Utah. I will try to summarize our motorhome experiences on that trip here. We certainly had a few issues.

1. The air system would lose about 50 pounds of pressure in 24 hours. We could generate enough pressure to release the brakes when the engine was running, but there was often insufficient pressure for the pneumatic levelling system. After the trip, the shop that did the engine rebuild found where they had caused the leak and took care of fixing it.

2. The backup camera has stopped working. This apparently happened while the motorhome was in the shop getting the engine rebuilt, but the shop denies responsibility for the malfunction. I will need to investigate and see if I can get it working again.

3. Both fantastic fans stopped working. We had a mobile repair guy out who diagnosed it as dirty connections. He cleaned the connections and that resolved the issue.

4. The Hurricane diesel-fired hydronic heating system started having some issues. We discovered that the main control board has been recalled. I think replacing that (I now have the replacement part) and doing the next scheduled maintenance will take care of the issues.

5. We had the mobile repair guy replace the shower mixing valve, which took care of the problem with our shower and now allows us to winterize the motorhome. He also repaired 3 other leaks that we had discovered in the bath and kitchen sink areas.

6. The whole-house surge protector failed. Fortunately, we were able to find a replacement locally in Utah and the mobile repair guy (a professional electrician in his day job) was able to replace it.

7. The newly replaced alternator "failed". It worked well enough to get us back to the shop in Grand Junction at the end of the trip. They have installed the third alternator this year and things still are not working correctly. They have now diagnosed it as a bad battery solenoid (allows the chassis and house batteries to be tied together under certain circumstances). Very early on I suspected this could be the issue and tried to guide them to look at it. I failed:). We are now waiting on the part so they can replace it and confirm that is the real problem.

8. After the trip, while it was in the shop getting a few items taken care of, they discovered one of the wheel seals had started leaking. They also found two coolant leaks. All of those have now been taken care of.

9. The shop had forgotten to replace the generator air filter as part of the generator service they had done. They have now taken care of this. I was lucky to spot this and only did so because they had not billed us for a generator air filter. Air filters are particularly important on diesel engines and our generator has a diesel engine.

I think we are slowly (and expensively) working our way towards having a reasonably functioning motorhome. I sure hope so, because we would really like to use it to travel this year while I still can.

This is not our first RV and I was pretty aware of the potential issues that could crop up with a used motorhome. I sure did not expect to run into so many major issues, though.

Steve
 
Thanks for the summary, Steve. All I can say is “damn.”
 
Ditto Kevin, and Kim it’s great to have you back!

Currently I’m swallowing ok, it’s just that I’m losing the ability to lift the food up. Have resisted being spoon feed. Now I’m begining to like having my husband sit next to me while he eats and feeds me. Much needed togetherness.
 
Still in Tucson--leaving for Iowa May 20. Not sure I'll be able to get back again next winter. Had a great visit from my NYC daughter, SIL and grandson. Got in a couple of games of Mah Jong, a favorite pastime. SIL rented a bike and went for long rides around Tucson. I had a productive ALS clinic visit at the Tucson VA. Neuro there wants me to resume Radicava but I'm not sure. She claims there's clear evidence of its benefit slowing progression. I've taken to wearing a bib when eating dinner because I'm so prone to dropping food between plate and my mouth. Much the same all in all. Having temps in the 90's. 100+ can't be far away.

Ed
 
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