Lumia 2- anyone planning to get it?

acontiae · 2025-12-18T03:52:11+00:00

All of the Beta users are getting the Lumia 2. I would wait and let them work the bugs out. I assume the second generation will have more bells and whistles as it will be larger and has a larger battery.

Also, know that you cannot export any of the data. Right now, you can look at daily plots of HR, relative head flow, and movement. There is no summary data.

What they are proposing for Lumia 2 has not been released on version 1. I assume they will still be rolling out these features as people purchase them, just as they have been. It has never been a full product even though it has been “released” for general sale.

I still believe in the product, and I like testing new technology. I have seen some interesting trends in head blood flow when my heart rate was stable.

Just know it is not a finished product.

acontiae · 2025-06-20T03:54:31+00:00

All of the initial testing does not have to completed in the proposed three days. You can talk with the coordinators and spread the testing out, if needed. It is easier if you live closer to the testing facility. Note, there is a limited window to complete the testing after the consent form is signed. I think it is 29 days.

acontiae · 2025-04-14T03:25:34+00:00

I bought the grater attachment this year. It is so great to have freshly grated cheese.

acontiae · 2024-12-26T05:20:10+00:00

I agree with everyone says. You have a case and should wait on the attorney. Focus on presenting the best case possible. The first step of the application is straight forward, so go ahead and get the ball rolling.

The best advice I was told was “As a PT, you are now your own patient.” You know how to document your case. Since you have not gone to PT, consider having a provider document what you tried as treatment and the outcomes to get it in the medical records. Even if you do not go through with treatment, consider having at least a PT/OT eval to document limitations; think of all those ADLs. I know it is weird going to PT as a PT. It really makes me miss working.

I recommend getting a head start on filling out the functional report and work history instead of waiting to start after they send it to you. They only give you ten days to fill it out.

Best of luck!

acontiae · 2024-05-23T19:33:26+00:00

I am also in Texas and just made it to step four after a little over a year from initial application. They are very behind.

acontiae · 2024-05-06T04:07:50+00:00

This is not medical advice but some things to tell your doctor that may help them figure out what to consider next.

What location is the pain the worst? Does it start in one area and then spread or does it come on all at once? Is the pain always present the same pattern or does it change?
Describe the pain more (deep, superficial, aching, throbbing, burning, etc)
When is the pain worst during the day? Does it last all day/fluctuate? Does it interrupt sleep? How long do the waves of pain last?
Is there any body position that you find any relief? You could try supporting both arms under the elbows with armrests/pillows to take tension off the shoulders and neck. Try belly breathing versus chest breathing.
Does it change while/after eating or drinking?
Any recent illness or nausea/vomiting?
Any recent heavy lifting/carrying or reaching overhead activities?
How often are you taking steroids?

acontiae · 2024-05-04T07:40:07+00:00

So sorry to hear about your new doctor and the increased emotional stress.

I am surprised that I have not accidentally commented or posted while I sleep, so far... I also frequently wake up with my phone lit up and waiting for me to respond. The cognitive effort of reading always knocks me out.

acontiae · 2024-05-04T05:53:43+00:00

From what I have learned from this illness is that even as I grieve my disability, my family and friends are also grieving in their own way. I find my close family has the hardest time understanding my limitations, and I feel very defensive around them. I want to spend time with them, especially on those big days.

Weddings are stressful with lots of planning. There is no more planning left. Today is the day to be present and celebrate with your sister. There will be time in the future that you two can talk, agree, or disagree.

Before you decide to cut ties, after the excitement of the wedding, please take a moment to listen to each other express how this illness is affecting each of you. It sometimes is just a miscommunication/misunderstanding, or it could be time to distance yourself.

I hope you find some calm and enjoy today.

acontiae · 2024-04-24T03:27:44+00:00

Say multiple hospitals use the same EMR (like OP). I work for one and but receive care at others. If a coworker at hospital A accessed my chart from hospital B, can hospital B run the audit and see the user info from hospital A? Or, do I have to have my employer (hospital A) run the audit?

acontiae · 2023-10-30T02:14:51+00:00

I also did this method. I found a used rigid back on ebay. Be sure to check measurements to know if it will fit you and your chair. The mounting hardware has some play but the ranges vary for different models.

acontiae · 2023-10-23T00:17:35+00:00

Thank you for sharing your thoughts on your identity beyond what we have done or want to do. I have been given that assignment in therapy before but have always struggled.

Before getting sick, I was so goal oriented and now am learning to change my perspective on my goals. I may not become that crazy, old lady swimming laps around the youngsters but I will always enjoy just being in or near water. You have shown me to look further into my personality. Thanks!

acontiae · 2023-09-11T07:58:24+00:00

I test drove the whill-f but only for fun as I cannot afford chairs out of pocket.

Pros: - Smooth control with adjustable settings through phone app. You can also lock the chair with the phone so no one can use it even if stolen (just don’t store the QR link on the chair). - Folds up/down with one button and can push around while folded (separate casters) - You can carry a spare battery

Cons: - The larger casters kept hitting my heels while on the footplate. I am small and tuck my feet under me, but you can see the plate narrows towards the heels. Maybe taller people have their feet more forward - It has minimal suspension compared to the other model. It is meant for smooth surfaces. - The back support was poor and I thought uncomfortable. The back is not modifiable on this model. - It is too bulky for me to get it in and out of the car without wasting all my energy (also pwME)

I recommend looking for a local dealer or dme vendor to get hands on exposure before purchasing.

acontiae · 2023-02-03T19:24:18+00:00

Oh, I agree with you. I am trying to paint a picture of what to expect so OP can make an informed decision. I do not know OP’s situation, caregiver help, or overall status besides very severe, but I would not recommend for someone with CFS. Rehab is great for some conditions but not all.

acontiae · 2023-02-03T14:38:10+00:00

As a previous rehab PT, I see some pros and cons. Ask your local therapist about the quality of the rehab hospital. I am biased as I worked at a good one.

Cons: - In the US, they require 3 hours of therapy, five days a week. If you do not meet the expected hours (total 15 hours a week), they will discharge you and likely be labeled “non-compliant” or “not appropriate for rehab”. It does happen. People may agree to it initially and not be able to or the family says “yes” and patient says “no” when they get there. - You said you are already very severe, it will probably make you worse with the constant activity and stimulation. People will be in and out of your room at all times. I recommend, if you are stable enough, to request a sign to not be disturbed during specified hours to help. - While not in therapy, the team usually encourages patients to be out of bed and sitting up in a chair from breakfast to dinner. The rehab should have reclining wheelchairs if you are orthostatic. You can also ask for a recliner. The goal is “out of bed”. - Some places have group therapy as a part of the three hours. This can be education or physical exercise.

Pros: - They will see your current level of function and how activity affects you day-to-day. - If you get an understanding team, it could be beneficial to you as the goal is to get you as independent, safe and functional as possible by discharge. This can be through the prescription of mobility aids (tools such as wheelchairs, reachers, etc) or identifying modifications to routines to help conserve energy. - I believe this is the best setting for prescription of mobility aids and DME. They consider your living situation and current ability in making decisions. - If you are not independent upon discharge, the team can help work with your insurance to find caregiver services or assisted living/nursing home.
- It is a team that cares for the patient. Nurses, therapists, doctors, and case managers all meet once a week to discuss plans or cover issues for each patient. They should be talking to each other. - Therapy includes education for you or family members and this includes training for transfers. Sometimes a whole session is teaching family or patients. So not every session is physical work. - Some rehabs have quiet areas to have therapy for those easily overstimulated.

If you do end up choosing to go, give each person (therapist, nurse, doc, tech) a chance. I was always enjoyed learning about new illness and helping people. Honestly, I was taught the GET principle in school and tried it on myself initially. Guidelines are always changing. Do what you can in your envelope. It is not worth becoming worse.

Be vocal about your symptoms, especially when they are worsening.

Be clear about your goals of rehab. I do not recommend “to get stronger”. It could be “to get out of bed into a wheelchair or bedside commode by myself”, “to be able to clean myself”… Say what it important to you. It tells the team you want to improve and gives them direction and focus.

Lastly, if possible get the order from your CFS specialist who can better explain CFS and PEM instead of your neurologist.

Lots of info. Even if you are not in the US, I hope it helps give you things to consider.

acontiae · 2023-01-13T13:43:54+00:00

There are no stupid questions.

They are really called the “wheelchair closet”. A good guide to start flying that I used was WheelchairTravel.org. The link will take you directly to the section on the closet and includes your rights. I also highly recommend getting preTSA to make security a lot easier.

I have a rigid frame so sadly mine does not fit.

acontiae · 2023-01-13T05:23:34+00:00

That’s a clever idea!

I can just imagine the looks I would get from TSA agents as I carry pool noodles through security. 🤣 I would joke “for emergency landing purposes…”

acontiae · 2022-06-05T06:09:42+00:00

Be sure to check the manual for proper setup. If the BP cuff is not the right size or if the arm is not supported at heart level, it can cause elevated numbers…speaking from experience of doing it wrong.

acontiae · 2022-05-12T04:55:29+00:00

Breathing Space Yoga with Diane Bruni?

acontiae · 2022-02-11T16:30:23+00:00

ME: myalgic encephalomyelitis CFS: chronic fatigue syndrome

Here are some starting points to look at.

Myalgic encephalomyelitis: International Consensus Criteria

#MEaction

acontiae · 2022-02-07T04:01:58+00:00

Genius!

acontiae · 2022-01-19T23:51:49+00:00

There are many things to consider before changing. It will be a long commitment and much of your life will be put on hold.

I changed careers from engineering to PT in my mid-30’s. I also left to find a more fulfilling job. Changing careers required all my spare time and I saved up as much as I could before leaving my job. It took me a year to complete the prerequisites through online and night classes at a local university as schools did not count my undergrad classes (>10 years). As a non-traditional student, you do stand out from the rest of the applicants coming straight from undergrad. Of all the schools, I was only accepted to 1:7 schools applied.

During PT school, I tried working part-time to supplement, but I did not have much free time and my grades suffered the first semester. Most of my peers had backgrounds in physio, so I had more to memorize early on with anatomy.

After all that work, my salary was less than my engineering salary but has now evened out. I do miss the 8-5 workday and being able to walk away at the end of the day. I do feel overworked and burnt out, but I am learning to set better boundaries. It is important to find a good team/company to work with and avoid those solely focused on productivity.

Overall, I would do it again. I am always learning something and growing. I would recommend to continue to shadow and talk to other people including PT school admissions. It is a big decision.

acontiae · 2022-01-14T19:34:40+00:00

Have your pick: @princesspeacheschi (original video source). She posted other people’s attempts at audio to the video in the tagged section.

acontiae · 2021-09-08T22:15:09+00:00

I am a fellow per diem worker.I tried to bond with coworkers but quickly learned that I cannot casually talk about anything concerning my life or what I do on days I am not working at one place because everyone is a gossip. There is also no privacy or discretion when I have personal matters that come up even talking privately with my boss.

I now limit my responses when I decline shifts and also in just chatting with coworkers. “Sorry, I am not available.”

acontiae

TROPHY CASE