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    It is a self cleaning pool. DH takes care of the...

    It is a self cleaning pool. DH takes care of the chemicals. I wouldn’t have a clue about that...

    Today, I did about 15 minutes of low energy weeding of sunny ornamental plants on front walk way....
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    Swam 25 minutes 1/2 mile, reserving time to pull...

    Swam 25 minutes 1/2 mile, reserving time to pull pool cover back onto the pool. today was first day of pool cover as it seemed wasteful to heat pool to 86 and then watch the steam escape all morning...
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    Main goal: Not to break a bone from falling due...

    Main goal: Not to break a bone from falling due to icy conditions
    Secondary goal: Blood work and Ocrevus.

    My strategy is to postpone the blood work and Ocrevus pending weather. Call infusion...
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    Holy Mackerel Renee— what a cluster of bad luck. So glad you survived it, on to the next medical mystery train...keep us inform and if you would...
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    Swam 28 minutes 133 yards today

    Swam 28 minutes 133 yards today
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    And another case study reported by the same...

    And another case study reported by the same Physical Rehab etc journal
    https://www.eventscribe.com/2019/AAPMR/PosterTitles.asp?pfp=Posters
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    Gardening Cart ideas?

    I would like to be able to sit and pull weeds around the ornamental plants.
    I envision a cart with big tires that can go on grass if necessary, with no side wall so that I can easily get off the...
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    Case Study: Baclofen Pump success

    https://www.eventscribe.com/2019/AAPMR/fsPopup.asp?efp=SU9SSExaSlM3ODY1&PosterID=227260&rnd=0.2512593&mode=posterinfo

    This case story is about a Baclofen pump placed in a patient with SPS who no...
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    OhJeanie, how frustrating and how...

    OhJeanie, how frustrating and how miserable...will this latest fall trigger Medicare to pay for more PT?
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    My oldest child is visiting tonight through lunch...

    My oldest child is visiting tonight through lunch on Sunday. I am Sooo looking forward to being with her, seeing her, hugging her, listening to her..
  11. Thanks AGate! Will def read this pdf :)

    Thanks AGate! Will def read this pdf :)
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    Agate and ANN really push hard :) I swam 28...

    Agate and ANN really push hard :)

    I swam 28 minutes and 1/2 mile plus 100 yards.
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    Virginia, did she also culture the urine, so that...

    Virginia, did she also culture the urine, so that if the antibiotic is determined not to work for that particular bacteria infection of bladder, she will have the culture back to tell her which...
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    Gamunex Recall

    5327

    Info on Gamunex recall.

    You can sign up to get recalls on biologics medicines.
    I have been doing this well over a year, and only Gamunex of the IVIG category seems to have these recalls,...
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    Gamunex Recall

    5327

    Info on Gamunex recall.
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    I swam 30 minutes today for 1/2 mile plus 80...

    I swam 30 minutes today for 1/2 mile plus 80 yards.
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    https://www.smh.com.au/national/south-australian-c...

    https://www.smh.com.au/national/south-australian-cannabis-supplier-spared-conviction-20191107-p538jq.html
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    https://www.cureus.com/articles/22323-a-case-of-an...

    https://www.cureus.com/articles/22323-a-case-of-anti-glutamic-acid-decarboxylase-65-antibody-positive-stiff-person-syndrome-presenting-initially-as-acute-peripheral-vestibulopathy-leading-to-delayed-d...
  19. Ibuprofen should be fine. I take 27 meds, and...

    Ibuprofen should be fine. I take 27 meds, and none were ever stopped for an MRI.

    Good luck to you. And Good luck to your vote. Our local people threw out the entire city fathers when they voted...
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    Not to worry. IVIG went well. They just started...

    Not to worry. IVIG went well. They just started late due to a “meeting”...so I got home too late to get back here. Got home, ate, took meds, went to sleep.
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    My favorite Pink Floyd song on Time: ...

    My favorite Pink Floyd song on Time:

    https://genius.com/Pink-floyd-time-lyrics
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    I have teh book, someone passed it on to me and...

    I have teh book, someone passed it on to me and its in my queue!
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    Virginia,
    Something very strange indeed— please get seen today. And insist on a urine culture...and maybe a referral to a urologist depending on how things proceed.

    Its as though your sphincter...
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    Still swimming every day and walking more since...

    Still swimming every day and walking more since PT started.
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    I swam this morning for 1/2 mile and 80 yards, 27...

    I swam this morning for 1/2 mile and 80 yards, 27 minutes. Did PT today and we talked about instead of walking for 2min45sec at one clip 2-3x daily, break it up so I am walking around the kitchen...
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    Virginia, Call the doc office and ask them to...

    Virginia,
    Call the doc office and ask them to put in an order for a urine culture at quest or whatever lab. It takes 48-72 hours to grow out the culture, so at least get a jump on it.

    If they...
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    Ouch ANN< dont be a big shot! Moved this post...

    Ouch ANN< dont be a big shot!

    Moved this post from agate from the oct keep moving thread:

    Default
    Quote Originally Posted by agate View Post
    A couple of years ago my health care plan (United...
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    email UHC and ask if there can be a modified...

    email UHC and ask if there can be a modified requirement for severe disabled. Point out it discriminates against the disabled who need accommodations. Point out that disabilities are already...
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    I somehow missed logging in on this thread! I...

    I somehow missed logging in on this thread! I have been swimming every day.

    Today I woke up 1/2 hour late, which crunches the swim window as I have to swim before DH goes to work...but I greased...
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    I tie certain twice a year maintenance task to...

    I tie certain twice a year maintenance task to DST such as cleaning the ac filters.

    Only a few things change auto such as the cell phone. So, its a race to fix it all and to trouble shoot timing...
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    Wonderful thread! Hi Alex, nice to see you...

    Wonderful thread!

    Hi Alex, nice to see you again...come be part of our BT routine again ?
  32. Thank you... But I would rather go back to being...

    Thank you...
    But I would rather go back to being blithely unaware of other people’s suffering and being healthy :)
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    Fantastic costumes!!!

    Fantastic costumes!!!
  34. Thread: RIP Catdancer

    by Sunshine
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    I think her first name was Cat Dancer, correct?

    I think her first name was Cat Dancer, correct?
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    TY Rose: Yes, still taking same dose of MMJ and...

    TY Rose: Yes, still taking same dose of MMJ and it helps., although it’s not as necessary. May eventually try to stop a dose and see what happens.

    Great for Jim!
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    I continue to do better on taking ativan twice a...

    I continue to do better on taking ativan twice a day in terms of spasticity. Thus, I am able to swim more, walk more, cook more easily and enjoy company more since the pain from spasticity is greatly...
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    Witch Hazel University

    I wish I had printed all of the uses that Rose and others cite Witch hazel for in terms of effectiveness.

    Might it be redundant to ask members, or Rose (as though she isn’t busy enough with fires...
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    Thanks Howie! Maybe a Mod can add Chit Chat...

    Thanks Howie!
    Maybe a Mod can add Chit Chat after the November?
    Or do you prefer making the title mysterious :) in honor of Halloween?
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    Pushing a chair on carpet, for example, raises my...

    Pushing a chair on carpet, for example, raises my blood pressure due to the exertion involved. Not a bad thing, just an index of the difficulty of rolling across carpets.

    Today I swam 1/2 mile...
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    Hello jingle :) Yes, Rose, when I see teens in...

    Hello jingle :)

    Yes, Rose, when I see teens in my infusion center, battling cancer, it is so damn unfair that teens have to deal with such a heavy disease. Any heavy disease.
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    Keep on Moving: November 2019

    MS creates some real challenges to keep on moving. It helps to inspire each other on how to find ways to move.

    Did you stretch in your bed, swing your arms, roll side to side today? Or perhaps...
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    Rose, I am so sorry you are going through this....

    Rose, I am so sorry you are going through this. Your life this past year has been epic, so much of a rollercoaster, fear, sadness, hope, and through it all you seem centered. No?
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    I swam 27 minutes 1/2 mile today, then went up...

    I swam 27 minutes 1/2 mile today, then went up the 4 steps, down , up and down inside the pool again .
    Just to see if its possible. It is.

    Today I am resting a lot, crying some for all that is...
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    I hadn’t thought Medicare could discriminate based on diagnosis. WTF?
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    I swam 1/2 mile 24 minutes today.

    I swam 1/2 mile 24 minutes today.
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    I walk indoors on tile floor as the whole home is...

    I walk indoors on tile floor as the whole home is tiled. Harder to walk on softer surfaces.
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    Today i swam 1/2 mile plus 80 yards PT has me...

    Today i swam 1/2 mile plus 80 yards
    PT has me walk 1 min 45 sec twice daily. Its hard
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    Thanks NHatch, you have a good memory! So far,...

    Thanks NHatch, you have a good memory!
    So far, so good. Youngest in SoCal and not near the fire, I read today that the air is super polluted, will get full report in weekend phone call for sure......
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    Brain on Fire is an incredible read. Hold onto...

    Brain on Fire is an incredible read. Hold onto your seat....
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    Thanks for checking in Nuthatch. The situation in...

    Thanks for checking in Nuthatch. The situation in California is sobering and a harbinger of the near future. ALl that scientists predicted about climate change are coming true...and while Rome...
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    I loved Bel Canto. Based on your review, I must...

    I loved Bel Canto. Based on your review, I must put The Dutch House on my list — 3 ahead of it :) only.
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    Swam 11 minutes, about 1/4 mile. Sin wanted to...

    Swam 11 minutes, about 1/4 mile. Sin wanted to spasm sopped ad rested on chaise. . Ten min later finished 28 min total swim 1/2 mile 80 yards

    Restarted Lynzess yesterday to unclog the g i grom...
  53. Share.! Bet i can se some!!!

    Share.! Bet i can se some!!!
  54. Thread: SPMS and MRIs

    by Sunshine
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    Hi ssusan. I guess I would wonder what the goal...

    Hi ssusan. I guess I would wonder what the goal is for an MRI? Are they ruling something else out which could account for worsening other than SPMS?

    That was a reason my neuro did a follow up...
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    Had a good swim today: 28 minutes, 1/2 mile plus...

    Had a good swim today: 28 minutes, 1/2 mile plus 80 yards.

    The PT has me wlking more too, so that has to be added in as well.
  56. I had tried this when I was spasming regularly...

    I had tried this when I was spasming regularly during surfing, prior to dx of SPS, prior to spasms getting so bad. It did nothing. It likely works for ordinary cramps.

    But SPS spasms are nothing...
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    One minute 45 seconds, which for me, is an...

    One minute 45 seconds, which for me, is an eternity for now. And scary
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    I did well. PT came again today. ... He...

    I did well.
    PT came again today. ... He explained that If I want to build up my butt,leg and hamstrings, I must walk more. Last time we did90” walk twice.
    Today I did 1’45’” walk and will try again...
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    IVIG was unevntful yesterday except for some...

    IVIG was unevntful yesterday except for some pretty uncomfortable nausea, which may or may not have been due to the IVIG. Subsided after a few hours by eating salty pretzel.
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    KEep us posted agate— are you going to do a test with new one of counting steps and see if it matches the PED monitor count?

    Today I swam 26 minutes, 1/2 mile plus 50 yeards. Feeling some vertigo,...
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    Today is another day, adios yesterday. The nausea...

    Today is another day, adios yesterday. The nausea was then followed by an episode of crying, which i never do in public, only at home with DH. In front of my nurse. I am sure she has seen it...
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    So far everything went well other than unexpected...

    So far everything went well other than unexpected nausea. Home now,getting ready for evening meds and sleep. The morning will tell the tale.
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    IVIG all day tomorrow. Hoping for uneventful. ..

    IVIG all day tomorrow. Hoping for uneventful. ..
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    Today’s PT was much more grueling. ALOT of walking, for me. 90 seconds twice. And other uses of my legs...if I don’t spasm tonight, then I think its a great plan. I continued what I learned...
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    Today I swam 1/2 mile plus 50 yards in 26.5...

    Today I swam 1/2 mile plus 50 yards in 26.5 minutes. I get so stiff swimming from the knees on down, but I am stubborn :); then get ready for the day: already cooked a nice supper for the next 3...
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    Nuthatch—
    Thats awfully scary— is the family that rural? Or has the civilization encroached on hunting grounds of these wild animals?
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    Swam today 1/2 mile plus 25 yards, 25.5 minutes...

    Swam today 1/2 mile plus 25 yards, 25.5 minutes
    Did th PT exercises too.
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    Swam today 1/2 mile plus 25 yards, 25.5 minutes....

    Swam today 1/2 mile plus 25 yards, 25.5 minutes.

    DId the PT exercises later in teh day too.
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    My PT said weight gain isn;t the issue. It’s muscle mass gain that helps
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    He said to lean off of the buttocks every half...

    He said to lean off of the buttocks every half hour for at least 30 seconds to allow blood to flow to that area. Its the cutoff of blood supply that harms you.

    For example, push up on the arm rest...
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    Thats a good report. How about putting honey...

    Thats a good report.

    How about putting honey on the wound?
  72. Replies
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    Today I swam 1/2 mile 25 minutes. I did my PT...

    Today I swam 1/2 mile 25 minutes. I did my PT exercises, which are easy to do.
    The PT is respectful, seems knowledgeable and knows to use passive PT so as to not trigger spasm
    He also told me some...
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    BT was down around 6 am today... Is there a...

    BT was down around 6 am today...
    Is there a website we can go to if BT is every down for days and days?
    Such as Neurotalk.org
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    If your head still hurts today, get in to see doc...

    If your head still hurts today, get in to see doc again, to rule out subsequent brain bleeding. Please!
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    https://www.ncbi.nlm.nih.gov/pubmed/31624742?dopt=...

    https://www.ncbi.nlm.nih.gov/pubmed/31624742?dopt=Abstract

    Research on the relationship between SPS and neuroendocrine disorders.
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