Wednesday, August 10, 2016

It's meant to help...

... and it might!

I just finished intense rounds of rehab:

Continued home therapy includes: weight lifting, playing cards and games like battle ship, and working with my 'Theraputty'....

Continued home therapy includes: writing some each day, reading a page of anything aloud each day while concentrating on my articulation and breathing....

Continued home therapy includes: leg exercises with theraband, standing/sitting/walking... but, also to continue with the Orthopedic Physical Therapist and try and get my hip/pelvis/skeletal issues resolved.
The posterior superior iliac spine lies over the sacroiliac joint, so patients with sacroiliac joint-mediated pain usually localise their pain around the posterior superior iliac spine. (kenhub.com)  Apperently the joint is bothering me due to a rotated pelvis - Symptoms of sacroiliac joint syndrome  and I'm to correct the pelvis with a series of stretches and by activating the muscles.

Can I stand tonight?  Not well, or comfortably.  I believe there's a 'that's too much' line we crossed today while getting me discharged.  Realistically, they aren't going to correct me in 6 weeks - frankly, they'll never 'fix' me... remember, I have ms.  But, we can hope and work to maintain what I currently can do, and all the therapists thoroughly enjoyed my son, and he them; as he made double use of their therapy aids, brought laughs and helped me with my exercises.


Sunday, August 7, 2016

Does ms kill?

I realize I haven't posted for about two years.  Lately, lots of thoughts on death has been on my mind; with recent deaths in friends families, deaths in my own family in the last few years, what seems like lots of people around me fighting 'statistically terminable' disease... and, being the self centered creature I am, they all tap on the 'where am I?' bell.  My personally known history of ms life loss include both my close High School friend's mother and my own grandmother - both to pneumonia, though 'a long time ago'.

THEN, these pop up in my news feed recently!
https://multiplesclerosis.net/living-with-ms/late-stage/
http://dailyrecords.us/marie-fleming-dies-after-long-battle-with-multiple-sclerosis/

Funny, I was examining this subject on September 1 of 2012, with a woman who threw herself into a canal (wish-ms-were-termanal?).

The second link above talks about Marie Fleming of Ireland, who actually died in 2013 after a long fight with the court to allow her assisted suicide. http://www.independent.ie/irish-news/right-to-die-ms-sufferer-marie-fleming-has-passed-away-29855136.html

The top link talks about 'late stage ms'... which, other then knowing about the two afore mentioned ms deaths close to me, I'd never really thought of ms as being one if those diseases that kill you.  BUT, the 'Late stage MS' blog entry talks about 'late stage ms being aggressive, progressive MS', based on a 2014 survey of MS in America.  "The life expectancy for someone with multiple sclerosis is very similar to the general population and the leading cause of death for people with MS is heart disease, cancer and stroke, according to the MS Foundation.  They point out that MS affects the quality of life but not the quantity."  According to the survey, there is '10%-15% of ms sufferers who are severely disabled and are totally dependent on others for all of their needs and face certain death from complications.'  I was completely unconcerned with my ms diagnosis, when I received my verdict in 2006... and even thought I'd beat it.  My, that seems like a lifetime ago.  I am in full agreeance with Marc Stecker (Wheelchair Kamikazee)'s thoughts on ms, as written in Fear Factor: "What demonoid could come up with such a disease, a fiendish thing that forces you to watch yourself  disappear but then doesn't have the good manners to finish you off?"  Hence, I believe, the stories of some with ms taking their death into their own hands.  Late stage MS also talks about planning for future decreases in ability and concludes with:
People might question what they did wrong to have advanced MS while so many others have a milder course of the disease, according to the NMSS. This site reminds us that there is nothing in particular we did, but it is the nature of multiple sclerosis to continue to advance, and it affects each of us differently.6 The difficult condition of late stage MS punctuates the need for accelerating the research of SPMS and PPMS. The vast majority of us will not face 8.5 or greater on the EDSS scale, but it is still important to support and understand what happens for the people in our MS community who unfortunately reach this point.

Apparently, fatal ms is not only on my mind lately, 
Death From Complications of MS, 8/7/16,