Saturday, September 14, 2013

Post 68 - My Turn

I guess it's my turn to write. 

Steve is ok.  It's just that it takes him so long to type that he gives up.  He has emailed several friends this past week. Short notes that took him the better part of the day.

We have had several new developments.
We finally were able to get a hospital bed.  Medicare is strict especially when you have an honest doctor.  The bed is not for the convenience of the caregiver but for the need of the patient. 

The other development is what qualifies him to get the bed. 
In the later stages of MSA a problem develops with breathing while sleeping. It is called Nocturnal Laryngeal Stridor.

What is happening is that his larynx cannot close and open correctly
(partial paralysis) and the air gets trapped going in with a wheezing sound and then bursts out with a graspy sound. Seems that it is a common occurrence with MSA.  Soooo, nighttime is not fun.  The second I hear him start making an odd noise I wake him up.  This happens about 5 times a night. Oddly, there are some nights that it doesn't happen at all.

We are waiting for a scheduling of a sleep study to be done at the hospital.  The doctor prefers this than a sleep clinic because of Steve's medical issues.

His supra pubic catheter is working out very well.  A nurse comes to change it every 3 weeks rather than 4 because for some reason his bladder makes tons of grit that clogs the tube.

Bowel issues: Let's not go there.  I give him prunes and juice, miralax, docolax,  liters of water, fruits and veggies, and still he has a hard time.  His brain may send the message but his body is not receiving it.

It's kinda like when I talk and he doesn't listen.  Chuckle!


  1. I absolutely love visiting. Your candid, warm & gracious (if not downright hilarious) reports help me better understand the same condition our 43 year old Pastor is battling.

    God bless you both as you continue demonstrating what it looks like to live on the high ground!

  2. Fran you are doing such an outstanding job. You are truly an angel....Steve you are always in my thoughts and prayers..Never Give Up.... Lee Reed

  3. sending lots of loveSeptember 15, 2013 at 1:07 PM

    Are you near any research facilities? I was wondering why sometimes the throat will close and not others. It doesn't seem to be understood just yet but one paper mentions some help for this (CPAP, botulinim injections to prevent the muscle from constriction, etc.):

  4. Hi Fran
    I have been following Steve's posts.
    My husband Ray was diagnosed with MSA in August 2010 but I think that his early symptoms started 2008. - his main problem is orthostatic hypotension so the worry is that his BP plummets and he passes out with the usual triggers which we have figured out by trial and error. He can no longer walk and so has been spending most of his time and actually sleeps in a lift chair with a roho cushion . He also uses a tilt wheelchair which allows us quite a bit of freedom because we can go out and he does not pass out since the wheelchair is tilted back to help keep his BP up. He also rides
    his recumbent bike everyday for exercise. He has always used a condom catheter at night so that he and I get a good night's sleep.
    He is prone to UTI s which you know cause havoc with the BP but
    he is on a low dose antibiotic daily to keep any infection in check.
    I take a sample each time I catheter him and if it is cloudy and he is
    starting to not feel well then we start a round of cipro.
    Mainly I contacted you to let you know how we handle the BM problem. He is able to go at least once a day fairly easily and his stools are fairly loose. He takes 2 100mg docusate sodium capsules twice a day and 3 senokot 8.6mg tablets at night. At breakfast he has a glass of prune nectar, a bowl of high fibre bran cereal with a banana, 2 tablespoons of kefir, 2 tablespoons of psyllium and soy milk. Ray thinks that the psyllium is what makes the difference so you might want to try this with Steve.

  5. My husband is not yet diagnosed with MSA, but have ruled out just about every thing else, including ALS. Hoping for a diagnosis on the 23rd of September, (2 years post initial symptoms). Not sure is it's MSA-P or C, looks like both. Just had sleep study and his apnea is severe, and his leg movements and jerks numbered over well over 300 during the study. Daily he has jerks, tremors, double vision at times, dizziness standing, very wobbly legs, and sometimes shuffles with other times walking like a stork. Has breathing issues, and chokes on his own saliva at times too. I would think we are now at a point for a diagnosis.

    1. Has your neurologist considered PSP? Could be that, especially with the
      vision problem.

  6. Hi Fran & Steve-
    I posted a comment regarding help with BM but I don't know if you saw it but it has not appeared here.
    Anyway my husband also seems to have the same MSA condition as Steve -- his main problem being orthostatic hypotension.. As a result we have to be vigilant with regard to UTIs and BMs . As well as the stool softeners we have found that a high fibre diet, kefir, prune nectar and especially 2 tablespoons of psyllium husks
    a day seems to work - he is able to have a fairly loose BM at least once day. If you are not already doing this, it might be helpful.