Seeler's complaints

[Seeler]

The ‘Universal Christ’ event that I attended over the weekend was interesting but trying. It took place in a UCC across the river (Luce NDs church). The large screen was set up in the sanctuary for the webinair and video parts. Unfortunately, the beautiful wooden pews, over 100 years old, were not made for people with spinal problems. Within five minutes of sitting down I realize that I wouldn’t be able to stand the pain. Fortunately, I had arrived early and I spoke to Luce NDs. Within minutes a comfortable chair with wooden arms was set up for me in the centre aisle. Relief, but I felt rather conspicuous sitting there in my special chair. Before the evening the over, someone else had a similar chair behind mine. By the next day, there were four people with special chairs. So now I had a comfortable chair and the pain was manageable with medication. I was able to enjoy, contribute to, and benefit from, the seminar – good fellowship, nourishing and tasty food, challenging ideas, and the presence of the Spirit in our midst.

Four full days is a long time for me – getting up at a regular time, managing my medication (I take pills four times a day for a total of about 25 pills a day), checking with Seelerman about his meals, arranging for a friend to pick me up or Seelerman to drive me, finding time to do my physio, and staying alert most of the day without my usual afternoon nap. The seminar ended Sunday afternoon and I rested all day Monday, but then found the energy to go square dancing in the evening. Today is grocery shopping day and back to the usual routine.

I was considering going to the first regional meeting of the church (replacing ‘conference’) next month. But it will be a large gathering on a university campus some distance away. I don’t think I could manage sleeping in a residence, walking between large buildings, finding elevators, and managing my meals in the cafeteria set up for students. And it will be a much larger gathering. I’m not sure I would be able to arrange for special seating, or to adjust my schedule to that of the shuttle bus. I think I will have to limit my involvement to the meeting of clusters – shorter days, nearer home.

I feel my world growing smaller; I can no longer take it for granted that I can do all the things that one time interested me. I have to think ahead, and sometimes decide to forgo an event or activity. Pace myself for what is really important.

 

[paradox3]

Glad to hear you enjoyed the seminar @Seeler.

I attended a conference at a university campus several years ago that was set up much the way you are describing. It was a great venue but it felt like miles of walking between buildings. It was a spring day and I can remember thinking how unpleasant rain would have made the weekend. With nice weather, the campus was lovely.

 

[Mendalla]

Glad to hear you enjoyed the seminar @Seeler.

I attended a conference at a university campus several years ago that was set up much the way you are describing. It was a great venue but it felt like miles of walking between buildings. It was a spring day and I can remember thinking how unpleasant rain would have made the weekend. With nice weather, the campus was lovely.

Hell, I've been to conferences that required miles of walking that were entirely indoors. Some conference centres in the US are massive. But having to do it outdoors with unpredictable weather just escalates the issue.

 

[ChemGal]

The ‘Universal Christ’ event that I attended over the weekend was interesting but trying. It took place in a UCC across the river (Luce NDs church). The large screen was set up in the sanctuary for the webinair and video parts. Unfortunately, the beautiful wooden pews, over 100 years old, were not made for people with spinal problems. Within five minutes of sitting down I realize that I wouldn’t be able to stand the pain. Fortunately, I had arrived early and I spoke to Luce NDs. Within minutes a comfortable chair with wooden arms was set up for me in the centre aisle. Relief, but I felt rather conspicuous sitting there in my special chair. Before the evening the over, someone else had a similar chair behind mine. By the next day, there were four people with special chairs. So now I had a comfortable chair and the pain was manageable with medication. I was able to enjoy, contribute to, and benefit from, the seminar – good fellowship, nourishing and tasty food, challenging ideas, and the presence of the Spirit in our midst.

Four full days is a long time for me – getting up at a regular time, managing my medication (I take pills four times a day for a total of about 25 pills a day), checking with Seelerman about his meals, arranging for a friend to pick me up or Seelerman to drive me, finding time to do my physio, and staying alert most of the day without my usual afternoon nap. The seminar ended Sunday afternoon and I rested all day Monday, but then found the energy to go square dancing in the evening. Today is grocery shopping day and back to the usual routine.

I was considering going to the first regional meeting of the church (replacing ‘conference’) next month. But it will be a large gathering on a university campus some distance away. I don’t think I could manage sleeping in a residence, walking between large buildings, finding elevators, and managing my meals in the cafeteria set up for students. And it will be a much larger gathering. I’m not sure I would be able to arrange for special seating, or to adjust my schedule to that of the shuttle bus. I think I will have to limit my involvement to the meeting of clusters – shorter days, nearer home.

I feel my world growing smaller; I can no longer take it for granted that I can do all the things that one time interested me. I have to think ahead, and sometimes decide to forgo an event or activity. Pace myself for what is really important.

Sounds like you're doing pretty good! I shared elsewhere that I had done some training this past month - 3 full time days was really pushing me to my limit.

I'm curious about whether you would feel comfortable to ask a stranger to switch chairs in someplace like a food court? I've often seen chairs of the same style, but only some will have armrests. Most of the time I don't even notice that they are different, it's only because of having to stack chairs that it became obvious. I doubt I'm the only one who is typically oblivious to the armrests/no armrests. I think most of us would gladly swap chairs, we don't even realize we may have taken these chairs. There's also the problem of them just being randomly with some tables, most people aren't going to move around chairs just to keep it free for those who may use it. If they were places more like highchairs and had something as a visual to indicate some may need them more, people would probably think of them more that way, although not everyone who could really want them want that visual aspect either.

 

[Seeler]

Sounds like you're doing pretty good! I shared elsewhere that I had done some training this past month - 3 full time days was really pushing me to my limit.

I'm curious about whether you would feel comfortable to ask a stranger to switch chairs in someplace like a food court?

I don't think I've ever asked to complete stranger to change seats with me.

Early on in my Parkinson's, before I had adjusted to my medications, I went to a daylong event at the church where we had a guest speaker (talking about food safety}. Shortly after I arrived, before the speaker was introduced, I started tremor in quite badly. I realize that I couldn't continue sitting on my upright chair with no arms or support, and I worried that I might have to leave. Then I noticed three women from the you UCW all sitting in armchairs. I went over and asked the one that I knew best "would you mind treating seats with me?" Immediately all three jumped up, and the one that was fastest on her feet got to give me her comfy chair and take the one I had been sitting on. Sometimes I asked the custodian to get a comfortable chair for me. Now I often find that when I attend events at my church, the chair has already been placed for me.

Recently, I've noticed acquaintances in public places, and even strangers, offering me a seat. Perhaps as a courtesy because of my age, but I think more likely because my physical condition is now obvious people seem to be very caring. I am grateful.

 

[ChemGal]

I don't think I've ever asked to complete stranger to change seats with me.

Early on in my Parkinson's, before I had adjusted to my medications, I went to a daylong event at the church where we had a guest speaker (talking about food safety}. Shortly after I arrived, before the speaker was introduced, I started tremor in quite badly. I realize that I couldn't continue sitting on my upright chair with no arms or support, and I worried that I might have to leave. Then I noticed three women from the you UCW all sitting in armchairs. I went over and asked the one that I knew best "would you mind treating seats with me?" Immediately all three jumped up, and the one that was fastest on her feet got to give me her comfy chair and take the one I had been sitting on. Sometimes I asked the custodian to get a comfortable chair for me. Now I often find that when I attend events at my church, the chair has already been placed for me.

Recently, I've noticed acquaintances in public places, and even strangers, offering me a seat. Perhaps as a courtesy because of my age, but I think more likely because my physical condition is now obvious people seem to be very caring. I am grateful.

Well I encourage you too! I know I would feel bad if I found out I was using a chair that was more needed by someone else. Someone not having a chair is fairly obvious, someone not having the *right* chair for them is less obvious.

 

[KayTheCurler]

Glad you enjoyed the conference and got a 'special' chair Seeler. Neat to notice that others spoke up after you started a trend.

Sure is interesting how long we can live without being bothered by walks to another area. I ran into a minor glitch recently when I spent a night in a hospital. When I arrived I entered through the main doors and took an elevator to my destination. Easy peasy, even with all the 'stuff' I had to carry. In the morning I was dismissed and told to exit through a different door. That was a whole new ball game - down the corridor (almost the length of the hospital) before reaching an elevator. I asked if there was a wheelchair or something I could pile my 'stuff' on. There wasn't but someone offered to carry it for me and see me safely on my way! Yup - a few years ago I wouldn't have given it a moment's thought.

 

[BetteTheRed]

And kudos to our dear @LuceNDs for helping out his friend, seeler! I like the fact that there were soon four special chairs!

 

[Tabitha]

Our congregation has chairs not pews. 4 or 5 chairs have arms. They not only make sitting easier but are helpful for going sitting to standing.

Seeler-I wonder about one of those scooters for you if you wanted to go distances between buildings. Mrs. SpiritBear uses one now on the bike paths. I know they are available for rent, if you just needed one for a few days.

 

[PilgrimsProgress]

I feel my world growing smaller; I can no longer take it for granted that I can do all the things that one time interested me. I have to think ahead, and sometimes decide to forgo an event or activity. Pace myself for what is really important.

I hear you, Seeler!
Even though I follow Process Theology I have never been to any meetings/seminars here in Oz. (I don't even know if they exist!)
Long overseas trips on my own are too much for me now (smaller world) but my doctor has encouraged me to take a trip to California in June for a Process seminar. It's not long -just a week - and I stay in the same hotel which means I'm less likely to leave stuff behind and the place will gradually get to feel familiar.

Just grateful that I travelled extensively when I was able - especially the trips I made with my husband. (Apart from when John and I travelled, I prefer travelling on my own. Those of you who have met me will appreciate that I'm not shy when it comes to talking with strangers - and I have a curiosity that is seemingly never satisfied!)

 

[Kimmio Laughterlove]

I also have to pace myself - can't do too much in one day even though, in my mind, I want to. Part of it is I get stiff and sore - but I also think I'm "deconditioned" (out of shape) and getting in better shape would help with stamina. There's a gym here - non profit - for people with physical disabilities, that I have been to. They have staff who are physio and kinesiology interns - and some adapted gym equipment that's pretty cool. I have not been for too long - and they recently moved to a new location further from me. Regardless, I should get back there. My physiatrist (Doctor of physical rehab medicine) was sick last week so I have to wait 3 more weeks to see him.


Enough about that - sorry. I hear you about not doing too much, though.

 

[Seeler]

Our congregation has chairs not pews. 4 or 5 chairs have arms. They not only make sitting easier but are helpful for going sitting to standing.

Seeler-I wonder about one of those scooters for you if you wanted to go distances between buildings. Mrs. SpiritBear uses one now on the bike paths. I know they are available for rent, if you just needed one for a few days.

I see those scooters going about town. They look so cool!
and having one might solve my problems about navigating between buildings on campus. But I don't know if the buildings are wheelchair accessible or if a scooter would be welcome indoors.
Another problem for me would be transportation. How woulld I get it to my destination? The campus is in a small town (village?) about 150 km away. I will be depending on other reps from my church to get there and back.

 

[Seeler]

I hear you, Seeler!
Even though I follow Process Theology I have never been to any meetings/seminars here in Oz. (I don't even know if they exist!)
Long overseas trips on my own are too much for me now (smaller world) but my doctor has encouraged me to take a trip to California in June for a Process seminar. It's not long -just a week - and I stay in the same hotel which means I'm less likely to leave stuff behind and the place will gradually get to feel familiar.

Just grateful that I travelled extensively when I was able - especially the trips I made with my husband. (Apart from when John and I travelled, I prefer travelling on my own. Those of you who have met me will appreciate that I'm not shy when it comes to talking with strangers - and I have a curiosity that is seemingly never satisfied!)

What was it - 8 or 10 years ago since I travelled to Halifax to meet you in real life? I'm so gllad we met up! So much has changed since then.
MY advice for all, DO IT NOW! If there is something you would like to do, do it now. Next year you might not be able.

 

[Seeler]

I also have to pace myself - can't do too much in one day even though, in my mind, I want to. Part of it is I get stiff and sore - but I also think I'm "deconditioned" (out of shape) and getting in better shape would help with stamina. There's a gym here - non profit - for people with physical disabilities, that I have been to. They have staff who are physio and kinesiology interns - and some adapted gym equipment that's pretty cool. I have not been for too long - and they recently moved to a new location further from me. Regardless, I should get back there. My physiatrist (Doctor of physical rehab medicine) was sick last week so I have to wait 3 more weeks to see him.


Enough about that - sorry. I hear you about not doing too much, though.

One of my problems now is the conflicting needs between Parkinsons and arthritis. Parkinsons calls for fairly vigerous exercise. Arthritis for much more gentile movement.

 

[Mendalla]

Gently vigorous? Vigorously gentle? Ouch, that is a conundrum. Not sure how bad or where your arthritis is but I'm just dealing with it in my fingers for, really, the first time (I mean, it's probably been there a while but it's bothering me a lot more this spring to the point where I finally got it properly diagnosed) and gentle is definitely what is needed. My left ring finger and right index finger get really sore and swollen at times right now.

 

[Luce NDs]

Gently vigorous? Vigorously gentle? Ouch, that is a conundrum. Not sure how bad or where your arthritis is but I'm just dealing with it in my fingers for, really, the first time (I mean, it's probably been there a while but it's bothering me a lot more this spring to the point where I finally got it properly diagnosed) and gentle is definitely what is needed. My left ring finger and right index finger get really sore and swollen at times right now.

Try it in your spine where it spreads to neurological connections ... some call this neuropathy and indication of a creeping loss ... neural abstract! However some folk believe in nothing with the word "nus" in the complex understanding ... still a word unknown to those that do not like reading and literary things except ... corrupt power of strong protocol ...

Now fear of fellow mankind and emotions thereof ... can get you stonewalled from reality in some countries ... one faction believes hate is an expression of gods of the meaner order ... from this let us progress! A process ...

I hope for a soft fall into the unknown ... like at night as I drift off in Joseph's Land ... Eve's wale ... in some traditions a swamp for the Doolittles ... satyr? (critters of the forest). GUMP ....

A good myth will accomplish to sub*liminal function of progression ... and enlighten liminality as a threshold to something other ... alternate conceptions and on to anagram ... looking at things from the other vector of sol!

 

[KayTheCurler]

Seeler - true words about having a variety of factors to exercise around. Parkinson's/arthritis. Arthritis/COPD. Heart disease/MS. The combinations are endless - but I have been told it is possible to cope around the problems. There are people in my small town who get about with scooters. Mainly they use them in town to pick up the mail, visit a friend or coffee spot or get some library books, - though one has a van with a ramp and the scooter gets transported to different wheelchair friendly locations . I know the family regularly hit the trails in a National park. One of my adult kids once said "A lot of problems disappear if you throw money at them" - I wish everyone who had a problem with getting out and about had what they needed to fix it.

Kimmio - how wonderful to have access to a special gym AND therapists/coaches.

 

[Carolla]

Scooters come in a whole variety of styles & sizes - just like cars - and wheelchairs - and walkers! It's good to get professional input before you buy/rent (if you're moving at all in that direction) so that the most important features are sorted out well. Some can be taken apart easily & put into a car trunk; some are better for outdoors, others for indoor use; they may have different control systems to drive them - to meet various physical needs. And of course - racing stripes & colour consideration are a must! LOL We used to have a couple at church who had a pair of them - used them instead of a car to get around town. Hers was red, his was blue

 

[Mrs.Anteater]

Gently vigorous? Vigorously gentle? Ouch, that is a conundrum. Not sure how bad or where your arthritis is but I'm just dealing with it in my fingers for, really, the first time (I mean, it's probably been there a while but it's bothering me a lot more this spring to the point where I finally got it properly diagnosed) and gentle is definitely what is needed. My left ring finger and right index finger get really sore and swollen at times right now.

See an OT for joint protection rather sooner than later. You might also benefit from some splinting.

 

[Mrs.Anteater]

Scooters come in a whole variety of styles & sizes - just like cars - and wheelchairs - and walkers! It's good to get professional input before you buy/rent (if you're moving at all in that direction) so that the most important features are sorted out well. Some can be taken apart easily & put into a car trunk; some are better for outdoors, others for indoor use; they may have different control systems to drive them - to meet various physical needs. And of course - racing stripes & colour consideration are a must! LOL We used to have a couple at church who had a pair of them - used them instead of a car to get around town. Hers was red, his was blue

There might be service clubs that have donated scooters- like Lions club. Not sure about the NB system. You might even get one through the health system. ( In NS you wouldn’t get a scooter but an electric wheelchair through the seniors equipment program, if need be).
The “ take apart and put in a trunk” scooters are NOT easy- the battery always weighs quite a bit and it takes a healthy “ younger” person to do it. When my mom still came from Germany for vacation, we always rented a scooter and a van for a week- and even without taking it apart, just getting it in and out over the ramp several times in a day is doable but not that much fun.