Miracles for TOMorrow

07/07/2022

So, I haven’t posted for awhile now as life moves on and we have gone with the flow.
Life has been a bit crazy over the past few years in a family emotional kind of way but I can say that we weathered the storm and a little over a year ago we put a stop to some evil infiltration within our beloved family.
That being said Tom and I were both sick for about 2 weeks.… really sick but now that that is over and done with Tom is dealing with the dreaded side effects of the disease, CIDP, rearing it’s ugly head with symptoms that we have seen in a long time.… drop foot being the main one, followed by fatigue and an increase in pain.
He hasn’t been this ill in many years…
Anyhow. I am curious to see how to ride this part of the storm post illness

05/12/2020

Have questions about Multifocal Motor Neuropathy? ? On Wednesday 5/20 at 3pm ET, medical specialists, advocates & affected patients will answer YOUR questions live and share helpful information. Send your questions: https://bit.ly/3bQqwFV and save a seat & register now: https://bit.ly/3bQn4Lo.
Looking for more virtual "Ask the GBS|CIDP Expert" Education?
Go to: https://www.gbs-cidp.org/ask-the-expert-educational-series/

05/01/2020

It’s May and time for GBS/CIDP awareness month.

In our third edition of Virtual "Ask the Experts," GBS|CIDP Foundation Director of Marketing and Communications, Maureen Neville, interviews Neurologist and ...

04/18/2020

Way to go Dr. Burt ❤️

Dr. Burt pioneered hematopoietic stem cell transplantation (HSCT) for multiple sclerosis (MS), becoming the first person to use it in pre-clinical models and...

02/09/2020

New news

NIH-funded study focuses on severe forms of relapsing MS.

01/16/2020

After being harassed, an Ohio woman with multiple sclerosis has created a special handicap placard for people with invisible diseases and disabilities.

01/06/2020

Yesterday we walked a little over 7500 steps through some uneven terrain and up and down small hills.... pre HSCT and post CIDP diagnosis this would not have been possible to do...
Tom has good days and bad days however overall he is doing good. He still volunteers and is able to do tasks around the house. He must still make sure not to overdo things or his body will complain.
The downside is he is still in pain. An overall body pain that with the assistance of a pain management program he is able to function 🙂

01/06/2020

We are coming up on 4 years post HSCT... wow!

12/29/2019

12/07/2019

The Conference in Moscow, Russia 🇷🇺 about HSCT featuring many dedicated physicians including Dr Denis Fedorenko and Dr Richard Burt.

https://hsct-russia.com/international-conference