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

[missluuluu495]

Happy holidays to all. It’s been an emotional couple of months. I now see weekly decline as opposed to the slower decline I’ve had the past 2 years. Losing my independence is difficult because I’ve prided myself being 4’9 and being stronger and more able than some men. I’ve been an EMT, ER tech and nurse at a very busy floor of a trauma hospital. I loved helping others. And now I can’t do anything. It’s a big change.

 

[swalker]

I hope everyone who celebrates Christmas had the best Christmas possible. For those who don't celebrate Christmas, I hope you have had and are having a very happy holiday season!

I continue to do as well as I can. We are enjoying the winter snows, which make things so beautiful. So far this season we have received 100 inches of snow (about 8 feet, or about 2.5 meters). We certainly had a white christmas!

I seem to transitioning to using the bipap more, and have been testing out a nasal pillow that does not obstruct my mouth during the day. That allows me to talk to my wife a bit during the day and seems to be working well, so far. I still us a mask that covers my mouth at night.

I went on a short wheelchair ride in my four wheel drive wheelchair a few days ago. The temperatures were a bit warmer and we had a blue sky day. It was glorious!

Steve

 

[SteveO]

Snow, Snow and more Snow this morning we woke up to about 8” and still coming dow. These days really make me miss my abilit. I would be out plowing snow with the 4 wheeler before daylight and follow up with the snowblower.
Today my son will get to enjoy the process along with my wife.We really need the moisture though and it’s supposed to go below zero next week.
@swalker I bet Vail is getting busy with ski activities and snowboarding.
‘Hope you all have a great day.
Steve

 

[swalker]

Thanks for thinking of me SteveO. Yes, it is winter in Vail and it has been quite a busy place.

Many people celebrated Thanksgiving, Christmas, and the New Year here. Now, we are inundated with folks for the Martin Luther King Holiday.

Our winter season started off with a pretty typical amount of snow. The snow really slowed down between Christmas and the Near Year. Since New Year's day, we have received a series of storms that are bringing us back up to normal. Before today, we had received about 140 inches of snow, which is probably not far off from what is typical for this point in the season.

This morning, my wife measured 19 inches on the deck before she started shovelling it. I so wish that I could help. That is a lot of snow and we have a pretty big deck. The wheelchair van lives outside (too tall for the garage), so she had to shovel around that as well.

We are in the middle of our second major winter storm in the last 4 days. This storm is expected to last until tomorrow evening. More snow is expected as the week unfolds.

I continue to do well, though am using the bipap more and get more fatigued during the day.

My wife, a physical therapist, has observed some spasticity in my lower legs, which, while tolerable, is inconvenient and uncomfortable. Oddly enough, having my legs tighten up makes it a bit easier to stand.

Steve

 

[Nikki J]

Hi everyone. This thread has been dormant for a long time. I am to blame as I stopped posting too.

Hope you all are managing as well as can be.

I am hanging in pretty well and glad that summer seems to have arrived finally though it has been rather wet. I find I am more tolerant of heat apparently and less of cold. Like my thermostat has reset 10 degrees F higher. It is 75 right now and feels cool. Yesterday it was in the 80s and I was not feeling it at all. I am not complaining just reporting!

Wishing you all a good summer

 

[KimT]

I'm still here in sunny Florida. I love the heat. My part of the State escaped the storms that flooded other parts. We had a few showers and that was it. I've been going in the pool several times a week. I rarely leave the condo common area. Groceries are delivered. I can still walk around the condo without the rollator. Outside I use my small light PWC. The condo is accessible so I can even get down to the pool using the ramps.

I'm still dealing with other health issues and will be seen at Mayo Clinic's Ehlers Danlos clinic next trip up.

I volunteered to Chair the Reserve Committee at the condo. It's a full-time job. Florida has new condo laws that were rolled out last year and they will have a huge impact on how we fund our reserves. Because of the high insurance rates after the past several hurricane seasons, companies are leaving Florida and our insurance rates are also going up. Too many meetings interfering with my watching WNBA games and playing cards. This will likely be a short term gig. I'll let someone else take over next year but this year was critical and the Committee needed someone with auditing and spreadsheet skills. My typing skills have really deteriorated, especially my left hand.

Other than that I'm just trying hard not to plan far ahead and making a better effort to compartmentalize my work, play, and daily downtime needs.

I got my hair cut short. It made a world of difference. I can just let it air dry.

 

[swalker]

I continue to do well, with slow progression. Next month I will celebrate 10 years since diagnosis. I find that so hard to believe. I did not expect to make it this long!

I have been using bipap consistently for the last several years. I cannot recline without it. I am slowly increasing the amount I use it per day, so that now the medical folks have approved me for a second bipap machine (both are Resmed Astral 150 machines). I typically use it between 12 and 16 hours per day, but some days need it more.

It is comforting to have a backup, but a bit unsettling to know that I warrant one.

I am also in the process of getting another wheelchair. I am about 5 months into the process and was notified this last Friday that the doctor's paperwork has finally made its way to the Durable Medical Equipment Provider (DME). The DME has told me that it should be about another 3 months for the wheelchair to show up at my door. I look forward to getting it, as my primary wheelchair has about 3,000 miles on it is ready for another set of motors (5 pairs, so far).

I have been able to maintain my weight, and since I started using bipap, have even been able to gain a bit. This has required a dedicated effort, but so far has been successful.

The big news in our life is that my wife (my CALS) was doing a solo backpacking trip in the Grand Canyon this spring. On her last night, which was at Phantom Ranch at the bottom of the Grand Canyon, she fell and badly broke her leg. She was evacuated from the Grand Canyon by helicopter and had surgery the next day. That was about 2 months ago. We had family and friends help for the first few weeks, but since then I have been her caregiver. I must admit to not being able to do a very good job as a caregiver.

Steve

 

[KimT]

Steve, I'm so sorry about your wife. Prayers for continued healing.

 

[Statius@]

Sorry about your wife Steve. I'm approaching my 9th year since diagnosis, still muddling along. Loss of dexterity in my finger makes typing hard. My wife fell in snowdrift in our front yard and ended up with frostbite. Daughters and help from the VA filled in for her as she slowly healed. best wishes to alll

Ed

 

[Statius@]

sorry for dupe. First one froze and wouldn't let me edit.

Ed

 

[lisa g]

We've all been quiet for awhile. Glad your wife made a full recovery Steve,

I've had an uptick in progression, I guess my plateau is over. Speech is just about gone and finding walking long distances with my rollator is just about done. I've had my PWC for a year without having to use it. I think the times coming so, we did a practice run. We bought a wheelchair van last year so might as well start using it. We put the chair in the van and strapped it down and were on our way. I started to feel claustrophobic and started getting very anxious. My husband had to turn around and take me back home. It was horrible. I guess I'll have to get used to the chair. Anyone else have a hard time adjusting to their PWC?

I have excess saliva and am about to scream. I've taken 6mg's of Glycopyrrolte a day, atropine drops and Botox injections with no relief. I emailed my neurologist and said that we needed a plan B.I had been researching salivary gland ablation and low dose radiation to the glands. My neurologist put me in touch with an interventional oncology radiologist. He explained the process and I was very comfortable with him. We left it that I would try one more round of increased Botox injections and if that didn't work I'd schedule an appointment with him. 2⅕ weeks ago I had 8 injections of higher dose Botox and nothing so I made an appointment with the radiologist for Tuesday. that this helps.

We usually go up north in the fall and in the spring. We decided not to go this spring and I'm glad, they're having hotter weather then we're having in Florida. Plus we have our pool here.

I hope everyone is doing the best as they can.

 

[Ed340hp]

Still here, but don't visit often. My 9 year anniversary from confirmed ALS was late May. I was in the Hospital 5 days in June, the first time in 26 years, combating months with UTI, kidney, and blood infections. Hospital air beds are not good for me. Hospitals are not prepared for ALS, no lifts or trained help and they want to leave you flat on your back (question them before they do damage). I did have my CALS bring my bipap from home on day 2 and set it up before they could object. I used it that night before they sent a Tech to assure it was not a hazard, and all was good, except for vital's and blood checks every two hours (new IV bags, etc., and little sleep). All better now, but it sapped my mobility, strength, and rang of motion. Warm (hot) weather finally arrived to help me gain back ROM.

It's great to read familiar names. Stay healthy.

 

[Nikki J]

Sorry about your wife Steve. Hope she is well on the way to recovery.

Stratius Ed I hope you can adapt to your next mode of communication easily.

Lisa I hope your appointment was helpful

Ed 34 sorry for the hospital time. It is terrible how much any illness or injury affect us

All is ok here. It has been pretty hot for Boston (90s)

My eternal search for a not hideous afo shoe turned up an easy spirit shoe that is almost cute ( by my lowered standards) I realize shoe appearance is very much a first world problem but still a win!

 

[Aloneinthis]

Hello, new here and struggling with denial but still trucking. Currently vacationing and it's 95F and wondering if I should maintain this temp because my feet are TOO HOT for the first time in a 18 months!

 

[Lhberko29]

I have laser eye surgery today. When rains it pours! Keep my spirits high!!