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

[swalker]

I am still doing as well as I can.

The rebuilt motor for the Magic Mobility X4 wheelchair arrived and we got that installed yesterday. I went on a 13 mile test ride today and everything seemed to work just fine. It is a relief to have that wheelchair working again! It is slow, but has the greatest range of any of my wheelchairs and will go amazing places.

We are making the trip to Denver tomorrow to have the bad motor on the F5 wheelchair evaluated.

Other than that, we continue to enjoy the summer here. We have had a lot of smoke from the wildfires to our west (California and Oregon, primarily). That has impacted me a bit. I find myself using the NIV more and blame it on the smoke.

I keep hoping I recover a bit more from our spring trip to Yellowstone. It has been over 2 months since we returned home and I think it is likely I have recovered as much as I am going to. I suspect I accelerated progression a bit due to the rigors of that trip. It really was hard on me, but overall I would do it again. Who knows how many more trips I will be able to make? I don't want to sit home and just wait for progression to happen! I might as well be out doing the things I enjoy.

Steve

 

[KevinM]

Steve, I’m so sorry to hear that you might have taken a step down from all the stress and activities during your trip. I very much hope you have several more trips in you, motorhome or no. Best, Kevin

 

[KevinM]

Hi all. Wednesday again, and I hope as usual to hear from as many of you brave souls as possible.

I had my zoom call with the neurologist last week, six months since my last in-person evaluation. Though I continue to slowly weaken, I was pleased to report that I can still do everything without assistance. As I’ve noted before, these calls are more for his documentation requirements than for me.

In keeping true to form with the poor bedside manner of many neurologists, he noted that I will require assistance at some point in the not too distant future. What a shock! Really? I didn’t know...

His hospital—UF Health in Jacksonville, FL.—is in COVID crisis mode. Last year, he said things were well under control, but not now. They are being overwhelmed. The news is incredibly bleak on multiple fronts, and there is so much pain and suffering around the world. I can barely stand it most days and grasp at any sliver of positive news I can find.

Hearing from even one of you brings me joy, so please drop a quick line if at all possible. Kevin

 

[Fusia]

Kevin, I guess I will be the first PALS today to bring you some joy… I'm so happy to hear that you still can manage everything without assistance!

I'm glad to say the heat has broken here in my area of Montana – we actually had quite a bit of rain last weekend and the temps are now in the low to mid 70s. Absolutely beautiful! I've been getting out for some short outdoor outings lately. This Sunday, my old group of golf buddies are taking me out for nine holes of golf. I will just be riding in a cart while they play. They laughed when I told them I would bring the bungee cords to strap me into the golf cart. They are going to show me where they buried the spoon that I used to carry on my golf bag - that's a story for another time (or maybe never…).

My list of visitors keeps growing longer. The entire month of September is filled, except for the last few days of the month. I think my friends are realizing that, for me, the end is more than just a hypothetical event beyond the horizon. But, that's OK for me - I've come to terms with it and it will be great to spend time with all who want to come visit.

In the last couple of weeks I bought what I hope is the last piece of equipment/technology I will need. It is a LiftSeat - it's a motorized frame that fits over the toilet, and helps to lower and raise you. @BarrCarr had recommended it in a couple of threads, so I decided to give it a try. It's actually working great for me and will help me stay independent for a while longer. We were able to move my bidet seat onto the frame with no issues. We also set up voice activated SwitchBots on the hand pendant, because I can't push the buttons. The whole thing works great. Yay!

My troop of caregivers continue to do stellar work, especially the one who cooks dinner twice a week. He is the most AMAZING chef, and my friends always know I have fabulous leftovers in my fridge.

That's it from here. Hang in there everyone!

 

[wmilo]

Fusia, you said you would bring joy, and you did! I loved your comment about family visits - "I've come to terms with it and it will be great to spend time with all who want to come visit." Also glad to hear you were able to adapt the bidet seat to the LiftSeat. A big deal.

My sister, BiL, and niece are visiting, and several other family members who are close enough to drive have come over. Great to spend time with all who want to come visit.

Typical August W Pa weather; hot and humid with scattered thunder storms. Thank heaven for A/C.

Best to all,

 

[blitzc]

Greetings everyone!
Good to hear from Kevin, Fusia, and Bill!

I'm also getting visits from folks like college friends we haven't seen for almost 30 years. Next month my Aunt and Uncle from Denver are coming to visit. The nice thing is that they will be staying with my mother which means we only need to travel to her house instead of having company at our home. My brother will rebuild the ramp for my wheelchair so I can get in the house.

It has been hot, humid, and rainy this month. I'm looking forward to lower temps.

Kevin, I see my Neurologist at clinic on Sept. 7th. At my last visit he reccommended the feeding tube (mic-key button) and supra pubic catheter surgery, so it will be interesting to see what he says this time! I still am getting home OT twice a week-I hope this continues. She finds something new to focus on every week! Pulmonologist finally caught up with me...appointment on Sept. 15 is first in person since before the pandemic (Jan. 2020). Boy, I'm sure there will be changes!

We are taking another road trip at the end of Sept. heading to Boston, Kennebunkport and Bar Harbor Maine, and Finger Lakes New York (not sure which city). My husband calls it the food and foliage tour! It will be just the two of us. The new catheter will make travel much easier.

OK this has been enough typing. I need a new talk to text extension for Chrome-my old one ran out of free time.

Have a wonderful weekend!

 

[KevinM]

Sure is damn good to hear from you Cathy. The trip sounds fantastic!

Your attitude, like Bill, Fusia, Steve, and others, always inspires me. Best, Kevin

 

[blitzc]

A good, positive, spirited Attitude is our BEST weapon in the fight!!!!
...a little stool softener isn't a bad addition!

 

[lisa g]

everyone in the northeast are staying safe from the effects from Ida.

 

[Clearwater AL]

I don’t post here much so…

I went to clinic, some no longer prefer to but I like the all in one
aspect… Neurology, speech, swallowing and pulmonary. It takes
the good part of a day. But… you get to see other ALS patients.
Sad part. Before COVID 19 they had a lunch buffet… no more.
All you get now is apple sauce and Graham crackers during the
speech and swallowing thing. Don’t do PT anymore. The pulmonary
numbers were down, progression was up. It is what it is.

The day was coming… my Neurologist told me to get started
getting the equipment I’ll be needing. Fortunately for me, this is
all available through the VA. Clinic will work with the VA for
the orders.

Something interesting… my Neurologist also has a degree in
psychiatry, some here may think I need that but I’ve passed that
with flying colors. I’ve not been prescribed any meds for
depression or anxiety which often isn’t the case for other PALS.

Within the studies to become a Neurologist is also considerable
study of psychiatry. More so ALS/MND specialists. Many Board
Certified MND Neurologists also have a degree in psychiatry.

So, when some of these “Could this be ALS’ers” are told by an
ALS Neurologist they have Anxiety... the Neuro knows it when
he/she sees it. But for many we’ve replied to…

 

[KevinM]

Oh, Al, I’m sorry to hear about the changes on the horizon. I can tell from your posts, though, that you have the mental ability to deal with these changes far better than I ever will. It’s coming for all of us, though.

I think you give neurologists a little more credit in the field of mental health than they deserve though, even if they did receive some limited training in that field. One of my graduate degrees is in psychology, and our knowledge of anxiety neuroses is probably greater than your typical neuro. We just can’t prescribe the meds that you don’t need anyway!

Always a joy to read your posts. Kevin

 

[lisa g]

Al, I share your thoughts on clinic. I like to see everyone in one day though I do keep local doctors in the loop since my clinic is 2 hours away. Due to covid I haven't any interaction with other PALS. I'm sorry about your recent visit and progression. It's something that none of us want to hear but know it's only a matter of time that we're told we'll be needing additional equipment. I thought for sure on my last visit I'd be told we should start paperwork for a PWC. I was surprised when my neurologist said that I wasn't ready that my balance sucks but general strength is still pretty strong. I'm surprised that the neuros are trained in psychology but it sounds reasonable when they deal with the anxiety of us PALS.

 

[Nikki J]

There is a good amount of psychiatry on the neuro boards. I just looked and it is currently 7-9 % of the content which is a good chunk when you consider the many other neurologic diseases and conditions that are included. One can also do a dual certification psychiatry and neurology. A neuromuscular specialist is not going to be as focused on neuropsychiatric issues as someone whose full time job it is but I agree with Al they are qualified to diagnose anxiety though it is not their job to treat it.

I am a clinic fan too though my clinic is very different from Al’s. I see my neurologist but everyone else is as needed. If she is prompt I am usually out of there in 45 minutes. The PALS never socialize and I only once was offered water and that was when my doctor was more than 2 hours late

Al I am sorry I am glad you have the VA resources but sad you need them.

Lisa I am glad you are strong. Did they give you any tips to help your balance?

 

[Clearwater AL]

To clarify, at clinic we don't sit around and socialize... it's more visual at the check in
lobby, passing in the hall to the exam rooms. It's a smile, a hand wave or just eye
contact. For me... a sense I'm not the only one. And a moment of thought... seeing
those who are now mostly incapacitated. Things to come... ?

 

[lisa g]

Yes Nikki I had PT for my balance issues. The exercises work well for a while but if I don't do them consistently I go back to square one. I had balance issues long before I was diagnosed due to a motorcycle accident I had in 2007. I ended up with a skull fracture and damage to my left inner ear. From that I have suffered from numerous episodes of Vertigo. Even if I'm not experiencing a Vertigo episode if I raise my head to look up or turn my head to the side to quickly it causes my balance to be off. Compound that with ALS it becomes a problem.