Education is a big part. Empathy doesn’t hurt. I think #pwMS are wise to share among themselves: symptoms, pitfalls, what helps/harms, treatment, diagnosis, assessment. Non #MultipleSclerosis People who Love You cannot understand what You go Through. Try to give them good info 💚
I would point them to website/twitter for @shiftms @mssociety @GavinGiovannoni @Brandon_Beaber @AaronBosterMD @drbarrysinger No reason to reinvent the wheel, so much information here. Fear is based partly in Not knowing What to Expect. Lay out a solid plan with detours possible.
Bumps in the Road shouldn’t be a sign of Failure, but a Detour. Don’t ever beat Yourself up. Don’t waste breath on loved one who can’t hear you. They can go into denial/depression too. It’s important for them to Know-it’s Normal. Sucks but that’s the MonSter I’m referring to 🐉
Now for my Friday Product Review. Therapeutic Vibes,
Modulation, Harmony, Heart Rate Variability, Sleep, Renewal, Repair. Yes, developed by Neuroscientist @Apollo_Neuro paired with @ouraring to monitor sleep, activity, vital signs, trends. Excellent products. I feel better ❤️‍🩹😎

• • •

Missing some Tweet in this thread? You can try to force a refresh
 

Keep Current with Mary Gerdt Parler:Alvarita1

Mary Gerdt Parler:Alvarita1 Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @marygerdt

19 Dec
Here’s what the Victims can do-loved ones of Nursing Home Residents harmed by AC’s Deadly error in judgement likely to protect/benefit owners of Nursing Homes.
Action Steps: Call Ombudsman, Letters to NY Department of Health, NY Licensing & Protection. Copy Hospital, Doctors.
Encourage Hospital and Nursing Home Employees to write letters. Did they Agree with Dumping #COVID19 positive or pending Hospital Patients into Nursing Homes with no preparation, no support, cohorting necessary, spread like wildfire. Incident reports? Risk Management?
Can Somebody test the “Free from Liabilities “ order AC made? I do Not believe that was Legal on any level. It implies nobody can Sue because they followed Governor’s order. I believe that is a lie.
Read 4 tweets
16 Dec
@Omcgill1 forgot to add ? Was he Lying when
AC stated @CDCgov and @CMSGov told Him to send Vulnerable sick elders Into ill prepared Homed with vulnerable elders? This is Contrary to Standards of Care-Nursing Homes should have been closed to admissions. 🤔 Deadly Airborne Virus 😎
Also, if CMS & CDC made such an order, believe me, HHS would have been involved as well as individuals in each State. Meaning, this would have been a Policy for Every State. Federal Policy. Not a casual phone call ☎️ or text. Weren’t there 4 Democratic Governors who ordered same?
Oh, and I forgot the immunity From liabilities thing that only benefitted the Nursing Home Owners-far distanced from the dangerous futile jobs their employees had to submit to, or be fired. Fin
Read 4 tweets
11 Dec
There’s way too much silence about the extreme negligence of sending patients infected with untreatable high lethality newly emerged respiratory virus to Nursing Homes. @JaniceDean spoke for many victims unable to speak out. I remember You two never backed down to Imus 😎
I knew at the beginning, watching it all from my recliner chair, wishing I could be in the middle of this. Wish I had been a nurse in a hospital dumping patients out (GOMER=Get out of my Emergency Room). I would have refused. I would have sent to Mercy Ship or Javits Center.
If I was Director of Nursing at a Nursing Home where Hospitals were going to dump infected or suspected #covid patients . I would have Closed the Door to New Admissions. I would have allowed limited, controlled,patient visits. Staff came and went. It was cruel.
Read 6 tweets
2 Dec
Excellent article #SmolderingMS
I Accept it as a Diagnosis #MultipleSclerosis
Also Dr. G wants to redefine MS as a Biologic Disease,
Currently a Radiologic Disease-MRI changes guide treatment/verifying relapse. I favor Biologic. Emphasis on Total Body Health.
@GavinGiovannoni For Me, the Patient, Monitoring my Day to Day Function, Symptoms, Impairments, Cognition, Sleep, Mental State, Activity, Trends, Social. If something out of whack, MS Team could be notified. Maybe a phone call, medication tweak, come in for eval, real time.
@GavinGiovannoni in my quest to eliminate #Gadolinium from @US_FDA approved drugs, I have done reading about MRI. I never realized active MS lesions only show up relatively briefly. Yearly MRI’s are a crap shoot. Oh look, there must be a new one…
Read 8 tweets
1 Dec
I believe it’s time for #RoeVWade to be revisited.
It was always a shaky ruling,
One case,
Unlimited power to abort until baby crowning.
Boon 4 Planned Parenthood
No guidelines. Lawmakers got off easily
They should have made law based on Multiple Views & considered human rights.
2️⃣ I don’t mean take away a Woman’s right to choose to have an abortion. I mean consider the age of viability when the Fetus becomes an infant, viable separate from its Mother. Planned Parenthood is unnecessary. Hospitals can designate a clinic where the pregnant woman can go.
3️⃣ Oh yes, a Social Worker and Nurse Clinician might assess the Woman and interview Her. Possibly, with the Father. Options can be discussed. Supports, counseling, other family planning. Yes, She might change her mind.
Read 4 tweets
18 Nov
@washingtonpost only got part of this right.
Healthcare has become Much more complicated. More moving parts. More obscure diseases, meds, treatments, individual preferences of Treatment Choices.
Patients move around a lot & Change Primary Care Docs a lot.
Lack of continuity.
Patients Don’t Tell Everything & Often Lie, Minimize or Maximize Symptoms, Often don’t know the right words, express pain as anger. Read something on the Internet or the neighbor said, try this.
They don’t hear everything.
Doc: You have Cancer
Patient hears Blah, Blah, Blah 😑
Personally on a Journey being Retired Disabled Nurse of 35 years with #MultipleSclerosis I feel I have #Gadolinium Deposits in my body, left behind after 11 MRI’s in 9 years. @Wagner_Nephro listens and believes it is Possible. Listening is Highly underrated as a Physician Skill.
Read 7 tweets

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us on Twitter!

:(