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

[wmilo]

Gee, it looks like April slipped right by.

I was without my PWC for a week. Died with the seat reclined so it was of no use. Took a week of playing intermediary between the doctor and the DME to get approval to fix it. Bad cable.

We had a month of occasional warm days followed by longer periods of rainy weather and nights around freezing. Now getting more Spring-like.

If it's not bad etiquette to mention TV programming, we enjoyed a Netflix series called The Last Kingdom. It is set in 850-870 AD in the time of Alfred the Great, when the Danes were invading northern England. Lots of riding around on horses and sword fighting. The protagonist, "Uhtred son of Uhtred" (Alexander Dreymon), is great.

Best to all.

 

[BlsdMama]

@Statius@ - I'm not sure if I realized you're so close to me, Ed? I'm just outside of Cedar Rapids.

@wmilo - I'm not sure how I'd survive without the PWC. Trying to wrap my head around it.

Well, I've been an incredibly slow progressor for 5 years. I guess at some point I was bound to have something faster. In my head, I had figured legs, arms, swallow, voice, respiratory. My voice has decided to skip the line. It's pretty rough but I'm understandable right now. The hubby said the other night that it might be time to attach my Tobii to the chair. The bipap will be here Wednesday. It's for use at night and naps, but it's one of those milestones that feels big, kwim?
The good - I adore spring. It smells like rain tonight and I'm not sure there's a smell I like better. <3 The lilacs are close to bloom, the trees are blossoming, and my tulips, daffodils, & muscarium are vibrant!
The kids are doing well, coping with all the new changes in stride. We're debating selling our acreage and moving to town. It is a lot for my husband to juggle on top of me and the kiddos. It will be bittersweet.

 

[swalker]

I have not posted much lately. There has been a lot going on and that has kept my wife and me pretty busy.

I continue to do OK. We spent most of February and March in southwest Utah and really enjoyed our time there. The weather was quite wet and cold, which interfered with wheelchair riding.

We were supposed to spend a week at the Grand Canyon in late April, but vehicle problems prevented us from reaching our destination. We spent one night on the road and fortunately made it home without too much drama.

Last weekend, I discovered that one the motors on my favorite wheelchair failed. Fortunately, I have several backup wheelchairs to use while we get that sorted out. New motors are on their way and supposedly will get here next week.

The snow is melting here and I have finally been able to get out on a few wheelchair rides. It has been wonderful to do so. It looks like the snow will be finally gone from our neighborhood in the next few weeks.

Steve

 

[SteveO]

Been pretty quiet here still trying to decide when to quit working from home and apply for SSDI.

I continue to progress slowly but my voice is being affected more now than ever, I can still speak intelligibly but it is difficult after a long day.
Took a tumble about a week ago and ended up flat on my face which is like a surprise, but my left knee has been somewhat sore since then so I'm taking it easy and not taking any chances.

Spring is arriving and we are about to see our lilacs bloom if the weather will cooperate, and we don't have a late freeze. Snow is slowly melting from our Mountain View and our rivers and streams are running higher than they have in almost 25 years, so we had good snowfall,
and it was much needed since we had had very low water the last 10 years.



@swalker hello fellow Coloradan, I'm sure you are enjoying the springtime in Vail and the snow melt and thaw that you mentioned.
It was snowing and frozen the last time we came through Vail a few weeks ago.

 

[EricInLA]

Like @swalker, I have not posted much lately. I'm blessed to have slow progression, so I've been busy just trying to live a (mostly) normal life while this body will allow. We traveled to the east coast last month to see our son who now lives in DC and works on Capitol Hill, and to see Broadway shows in NYC. Those are both walking cities and I was able to walk for miles which was reassuring. My main weakness continues to be right arm and hand, though I have clear involvement in the left limbs now. Fortunately it's going very slow on the left side.

I have been busy with work. When I was first diagnosed in 2020, I anticipated winding down my career and applying for SSDI and Medicare, but my slow progression as allowed me to continue working and even take on some new projects. However, I wonder how long that will last, as my left hand/arm are now going the direction of my (atrophied) right hand/arm. I guess I am like @SteveO in trying to decide how much sand is left in the employment hourglass! I am also concerned about my qualification for those benefits when I stop my active working. Some of my income comes from LLC interests in a couple small apartment properties where I (sort of) play an active role, and that would continue. I don't handle property management, but oversee that stuff as an owner. I don't know whether the government would consider that active work or merely income from investments, for purposes of qualifying for SSDI. Let me know if anyone has insight on that.

@BlsdMama - I'm curious about those voice issues, as I'm starting to have them too. I'm not slurring, but the strength of my voice is starting to wane, especially at the end of the day. I start to sound like Barry White z''l. At times I feel like my vocal range is limited. Interested whether you're experiencing any of that. It's scary, as I'm a talker and social butterfly. Speaking of butterflies, I'm also happy to have beautiful Spring weather here in SoCal. And NBA playoffs.

 

[SteveO]

@EricInLA - I was told by Social Security (local office) that income from rentals, investments and stocks or spousal income would not affect my eligibility for SSDI.
She used the phrase earned income and said that it was money paid to me by an employer that I received W2 for, self-employment would also fall under this category I believe, please let me know if you find out anything different as it would affect me also.

 

[KimT]

Eric, If your LLC gives you a 1099 for self-employment income, it is considered active income. Any income that is subject to SS and Medicare is active income.

Check your return for this year. It can be taken care of in other ways if you decide to "stop working."

 

[wmilo]

Hello, all.

We've been in the upper eighties, and are now upper 60s-low 70s. Lots of baby birds pestering their parents.

BlsdMama, how's it going with the BiPaP? I found it helpful to use it at first while watching TV, and then trying to nap with it before using it through the night. I'm on it around 20 hours a day now. Like you, I felt it was a big milestone, but I'm sure glad I have it now.

Best,

 

[lisa g]

Bill, we've been having the same type of weather in Ohio. We've been here since May and will be returning to Florida in July. We set up a bird feeder on our balcony and I've been enjoying all the adult birds and babies feeding. Our cat loves to sit on the inside of the screen and watch them too although I think she wishes that she was on the other side of the screen so she could get up close to them.

 

[gnat]

Hiya. We are having our second final big trip (first one last year 2 months after diagnosis, delighted to be able to do a second a year on). This included being a panel speaker at a conference in Paris 2 weeks ago, which I would not have expected a year ago (got help onto and off the stage, steps with no hand rail no longer ok for me). Funniest thing was being told by a woman I knew (who knew I had MND) that I had the best legs at the conference. She meant looks not functionality (given I had a walking stick too). I now call them my liar legs. They are still tanned from all the riding on the electric three wheeler we did over summer and autumn in NZ - over 1000 km this year. Anyway, we have also gone to Morocco, which has the most dreadful steps that are quite high and sometimes narrow and no handrail. The van step kept retracting too which was very scary. But otherwise the trip was great and I feel really lucky to be travelling again.

 

[KevinM]

Hi all. It’s been a long while since I posted but I am still here. In fact I continue to do pretty darn well on the ALS side of things, and am still mobile with decent strength. However, I have developed other significant health issues over the past few months—some sort of vascular issue—that my PCP and several specialists are still trying to figure out.

Since October I have undergone more tests and doctor visits than I ever thought possible. So many CT scans, ultrasounds and X-rays I would probably set off Geiger counters, and I’m surprised I have any blood left from so many rounds of bloodwork!

Wishing everyone peace and finding good moments each day.

 

[Nikki J]

Sorry you have had such a tough time Kevin. I hope you get answers soon

 

[wmilo]

Sorry to hear it, Kevin. Sounds like a double whammy. Like Nikki, I hope they figure it out soon.

 

[wmilo]

Unusually quiet spell in this thread.

We had a good visit with my sister and BiL and niece and her fiancé. Trying to arrange a visit with son and DiL.

Best to all.

 

[lisa g]

Checking in, the weather has been so hot even going in the pool gives you little relief.

We are back in Florida after spending a couple of months in Ohio.

I'm hanging in there and am still able to walk with a rollator. I had my wheelchair assessment back in April. The wheelchair was delivered last week and even though I don't need it yet it's reassuring that it is there when I finally do need it.

I had my clinic last week which I was surprised went so well. I still have good muscle strength. I've been taking the 3 r's (Riluzole, Radicava ORS and Relyvrio) and guess that they're doing what they're supposed to be doing. My last clinic was in January and between then and now I haven't lost anything on the ALS/FRS scoring in fact I gained 2 points.

My neurologist wrote an order for Botox injections into my salivary glands. They called today and had a cancelation and wanted to know if I wanted the appointment. I jumped on it otherwise the next opening would be at the end of August. I'm crossing my fingers that this helps