Transitioning at work and in all of my life

[WheelyCurious]

I am very sorry to hear this, I hope you continue to do as well as possible.

That said, I do suggest to anyone having to deal with progressive illnesses that you think long term when planning any purchases of adaptive equipment or making home / vehicle modifications, and so forth. Some things like mobility devices pretty much have to be obtained repeatedly to match your condition as it changes, but at least those are often covered by insurance.

Other things, it can be best to think about what the long term prognosis is and planning around that. The basic idea is that by doing things like home modifications so that they meet projected needs rather than your current situation often will cost little more, and saves the expense and hassle of needing to do them multiple times...

This is practical experience based advice from other users on disability related forums I'm on.

If you would like me to try answering any questions about mobility stuff, feel free to ask either in this thread or PM, I'd be happy to help as much as I can.

WheelyCurious

[Danya (imported)]

I'm sorry to hear you're having these challenges. I hope you're able to stay as active as you wish to be for some time to come, and able to do those things you wish to do.


[/q

uote]
Thanks, Losethem. I appreciate your good wishes.

I am very sorry to hear t

his, I hope you conti

nue to do as well as possible.

Thank you, WheelyCurious.

That said, I do suggest to anyone having to deal with progressive illnesses that you think long term when planning any purchases of adaptive equipment or making home / vehicle modifications, and so forth. Some things like mobility devices pretty much have to be obtained repeatedly to match your condition as it changes, but at least those are often covered by insurance.

Other things, it can be best to think about what the long term prognosis is and planning around that. The basic idea is that by doing things like home modifications so that they meet projected needs rather than your current situation often will cost little more, and saves the expense and hassle of needing to do them multiple times...

This is practical experience based advice from other users on disability related forums I'm on.

If you would like me to try answering any questions about mobility stuff, feel free to ask either in this thread or P

M, I'd be happy to help as much as I can.

WheelyCurious

Your advice is sensible and practical for those with progressive diseases. Mine might not be truly Parkinson's and even if it is the future course varies among folks. At this point, it's too soon to say what my prognosis is.

[kristoff]

As I looked over a few early pages of this thread I realized something major is missing. Namely any talk about struggles I had in arriving at my decision to transition.

I remember writing about how in the world I went from identifying as a gay male to the happy place I was in when I started "Transitioning at work and in all of my life." I have no idea what happened to those posts.

As I continue this thread I will recreate some of those early trials.

"Dany[quo[quote="Danya (imported)" time=1669799640

]
te="Danya (imported)" time=1667035200]

a (impor[quote="Danya (imported)" time=
[/quote]
1666694280]
ted)" time=1664695560]

[Danya (imported)]

For what it is worth, I now use a walker as well, though at times I get along OK with a cane. My doctor was also hinting at Parkinsons, but hasn't drawn any conclusions. It sux getting old - BTW, I am 69 today - but it is better than inhabiting another place. Best wishes to you!

K

Kristoff, I will have a DATscan in August, the definitive test for "somewhat" progressed Parkinson's. At the end of June, I will be 71 1/2. Yes, growing old sux. Thanks for the good wishes.

[WheelyCurious]

Glad to hear you are getting the testing needed for a more definite diagnosis... Hopefully it will turn out that you have something not as bad...

I'm not an expert on Parkinson's, but I know that the progression of it varies a lot between patients. However most of us don't have crystal balls in perfect working order, and there isn't any good way to tell how things will end up going. OTOH, one of the realities of doing adaptive mods is that the cost of doing a partial modification is going to be about the same as a 'worst case' one. But if you do a partial mod, and then need a more severe one, you will have about the same costs as if you hadn't done anything - in other words what you spent on the partial modification will be wasted... So it makes the most sense to keep that worst modification in mind, and either go there, or choose a path that minimizes the number of added steps...

WheelyCurious

[Danya (imported)]

Glad to hear you are getting the testing needed for a more definite diagnosis... Hopefully it will turn out that you have something not as bad...

I'm not an expert on Parkinson's, but I know that the progression of it varies a lot between patients. However most of us don't have crystal balls in perfect working order, and there isn't any good way to tell how things will end up going. OTOH, one of the realities of doing adaptive mods is that the cost of doing a partial modification is going to be about the same as a 'worst case' one. But if you do a partial mod, and then need a more severe one, you will have about the same costs as if you hadn't done anything - in other words what you spent on the partial modification will be wasted... So it makes the most sense to keep that worst modification in mind, and either go there, or choose a path that minimizes the number of added steps...

WheelyCurious

I appreciate your financial info, WheelyCurious. It makes good sense, thanks.

[Danya (imported)]

My husband (who goes by the letter H here) normally accompanies me into stores and shops. Thursday, H decided to wait in the car as I returned an item to Amazon at a UPS store. I used my four-wheel walker to get into the store. Although we had parked in one of several handicapped spots, the door to The UPS Store had no button to push that would automatically open the door for handicapped people.

So, I was pleasantly surprised, and happy, when a woman leaving the store said:” I’ll hold the door for you, gorgeous.”

Another woman happened to be entering the UPS store just as I was leaving. She also kindly held the door for me.

[quote="Dany[quo

te="Danya (imported)" time=1667035200]
a (impor[qu

ote="Danya (imported)" time=1666694280]

ted)" time=1664695560]

[quote="Danya (i

mported)" time=163[quote="Danya (imported)" time=

1655781720]
2195840]
[quote="Danya (i
[/quote]
mported)" time=146
[/quote]
2830000]

________________

__________________________________ _______________

___________________________________
[/quote]
_______

Foolishly

I was going without estrogen for many months until early July 2023. Ove[quote="Danya (imported)" time=166979964

0]
r the last few years, my gynecologist switched me

from estradiol injections to external patches. This was to m[quote="Danya (imported)" tim
[/quote]
e=1666694280]
ake it easier for me to use est

radiol; my esse

ntial tremor had worsened so that I co

uld no l

onger fill a syringe. Anyway, because I gave

an update on t

he tremor and admitted to my gynecologist that I had stopped using the patc

h months before, [quote="Danya (imported)"

time=1632195840]
I’m now using a daily estrogen gel that is easy to ap

ply. Unf

ortunately, it seems the easier the estradiol

applica

tion gets, the more expensive it becomes. :-\

_____________

_____________________________________ __________________________________________________
[/quote]
_______

I can't wait to reconnect with friends at this year's MoM which starts in just a few days!

[WheelyCurious]

I should point out that there is NO requirement in the ADA for power assist doors... I agree that they are nice and I use them when present but they are NOT required... It is a common misbelief that they are required. I have gone through training from our state disability commission to be a "volunteer community monitor" so that I can do 'no harm / no foul' inspections of businesses to advise them on how well they are complying w/ the ADA and what they need to fix... (And also make sure they are aware of the various funding assistance and tax break options to help cover the costs)

What the ADA DOES call out is a limit on the amount of force needed to push or pull a door to open it... This force limit is relatively low, I forget the exact number but it's under 10 lbs... The problem, especially with outside doors, is that it is so low the door can be opened by changes in air pressure or wind...

Power doors are basically an end run around this force limit, as there is NO limit on opening force for power doors... So a property owner that has problems caused by having low opening force on their doors can solve them by putting in a power opener... They can also do it to be nice, but don't have to.

WheelyCurious

[Danya (imported)]

I should point out that there is NO requirement in the ADA for power assist doors... I agree that they are nice and I use them when present but they are NOT required... It is a common misbelief that they are required. I have gone through training from our state disability commission to be a "volunteer community monitor" so that I can do 'no harm / no foul' inspections of businesses to advise them on how well they are complying w/ the ADA and what they need to fix... (And also make sure they are aware of the various funding assistance and tax break options to help cover the costs)

What the ADA DOES call out is a limit on the amount of force needed to push or pull a door to open it... This force limit is relatively low, I forget the exact number but it's under 10 lbs... The problem, especially with outside doors, is that it is so low the door can be opened by changes in air pressure or wind...

Power doors are basically an end run around this force limit, as there is NO limit on opening force for power doors... So a property owner that has problems caused by having low opening force on their doors can solve them by putting in a power opener... They can also do it to be nice, but don't have to.

WheelyCurious

Thanks for writing, WheelyCurious. You're quite knowledgeable about the ADA. Thanks for the information.

The suburb with the UPS store, perhaps like many suburbs in our metro area, usually has few handicapped parking spots per business. So when I saw several for the small UPS store I was surprised. The store's door was the first I'd seen, with handicapped parking, that had no power assistance. [Perhaps I hadn't noticed the lack of power assistance on many doors because my husband was always there to open doors for me.] I did wonder how I was going to get what looked like a heavy door open while I was using the walker. Next time we go there I'll want to find out exactly how easy or difficult that door is to open.

[WheelyCurious]

Thanks for writing, WheelyCurious. You're quite knowledgeable about the ADA. Thanks for the information.

The suburb with the UPS store, perhaps like many suburbs in our metro area, usually has few handicapped parking spots per business. So when I saw several for the small UPS store I was surprised. The store's door was the first I'd seen, with handicapped parking, that had no power assistance. [Perhaps I hadn't noticed the lack of power assistance on many doors because my husband was always there to open doors for me.] I did wonder how I was going to get what looked like a heavy door open while I was using the walker. Next time we go there I'll want to find out exactly how easy or difficult that door is to open.

Once again, the ADA does spell out how many HP spaces are required... It is based on the size of the lot, so a strip mall might only have one or two spots for a lot of businesses... (I'm not going to look up the chart...) They are supposed to be located close to the entrance and have curb-cuts or similar to make them wheelchair accessible. However sometimes they stick the ramp off to one side, and the space(s) with it... There are also rules about the sizes of the space and access aisles, and the maximum allowed grade (slope) for the space. Unfortunately for those of us that travel, they aren't as consistent about how they are painted.

(Minor amusement, I've seen a website featuring space repainting w/ the HP symbol not aligned, those signs can get into most of the positions in the Kama Sutra I wish *I* could....)

Doors can be a challenge. I find 'push' doors are easy, just push through... Pull doors are harder, the technique they teach us is basically to approach the door from the opening side, pull it open and quickly swing your front wheels into the opening so the door can't close... Then keep pushing it open and moving the chair further into the opening and turning until you can get through... Hard to describe but not to terrible...

Another minor ADA requirement - doors must be operable w/ a closed fist, so door knobs don't comply, which is why you now see levers instead... (Same thing applies to HP accessible sinks, and similar things)

WheelyCurious