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    5339 Happy Birthday Howie! May all of your...

    5339

    Happy Birthday Howie! May all of your birthdays be as peaceful and filling as this sunrise.
  2. Poverty and the Disabled: Impossible choices forced on the disabled

    https://blogs.msn.com/povertynextdoor/locked-into-poverty-impossible-choices-forced-on-the-disabled/

    Locked into poverty: Impossible choices forced on the disabled
  3. Poverty and the Disabled: Impossible choices enforce poverty on the disabled

    https://blogs.msn.com/povertynextdoor/locked-into-poverty-impossible-choices-forced-on-the-disabled/

    Locked into poverty: Impossible choices forced on the disabled
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    https://norml.org/news/2019/12/05/ca...erson-syndr...

    https://norml.org/news/2019/12/05/ca...erson-syndrome

    Case report of 1:1 THC/CBD MMJ helping SPS patient reduce
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    https://norml.org/news/2019/12/05/case-report-cann...

    https://norml.org/news/2019/12/05/case-report-cannabis-treatment-provides-symptom-relief-in-patient-with-treatment-resistant-stiff-person-syndrome

    Case report of 1:1 THC/CBD MMJ helping SPS...
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    Swam today as the air broke the 50F mark, to 52,...

    Swam today as the air broke the 50F mark, to 52, pool was 85. Half mile plus a bit, 27 minutes.
    Plenty of walking with rollator. Went OUTSIDE with my all terrain rollator and was able to walk for 7...
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    Not joking here. I had a friend this happened to...

    Not joking here. I had a friend this happened to and it ruined much of her house. Or was that Cherie, a cyber friend?
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    In my old multi story house, there was an...

    In my old multi story house, there was an upstairs water heater, and also an upstairs a/c system.

    Both sprang leaks, although at different times.

    Both times, they dripped down through the floor...
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    Coincidentally, a surfing friend gave me a book...

    Coincidentally, a surfing friend gave me a book this week called The Patron Saints of Liars by Ann Patchett. I have just started it and so far so good. balancing it with finishing up the Robothon...
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    Hello my fellow warriors. I have not been on...

    Hello my fellow warriors.
    I have not been on line very much the past week.
    The SPS is stable as is the MS.
    But the Side effects to Baclofen (no able to have BM) has created havoc, in that the...
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    Today I swam 1/2 mile plus 80 yards in a 86F pool...

    Today I swam 1/2 mile plus 80 yards in a 86F pool and 68F air. The air is plummeting quickly and will be in the 40s tonight, so I likely will not swim tomorrow....
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    Virginia, Thank you so much for the wonderful...

    Virginia, Thank you so much for the wonderful memories of Peg and Cat during the holiday season...it will be hard on Peg and Cat’s family for sure.
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    Good Luck Laz! You are amazing in your Keep on...

    Good Luck Laz! You are amazing in your Keep on Moving!
    Do they reschedule your Rituxan for next week, or how does that work?
    Waiting for DH to awaken so I can do my morning swim.

    It will dip...
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    Keep on Moving: December 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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    https://www.nytimes.com/2019/11/29/opinion/love-is...

    https://www.nytimes.com/2019/11/29/opinion/love-is-not-a-tally-sheet.html?action=click&module=Opinion&pgtype=Homepage

    This might apply in some ways to our discussion, our subtitled might be:
    ...
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    Tgiving went well here too yesterday. I cooked a...

    Tgiving went well here too yesterday. I cooked a shrimp casserole dish with Lentil Soup homemade, fresh salad, bread for DH, me and a friend. I was able to function, or atleast look like I was...
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    I swam 1/2 mile 27 minutes today and yesterday. I...

    I swam 1/2 mile 27 minutes today and yesterday. I developed a strategy of taking the ativan 10 minutes earlier so it’s kicked in better for the swim.
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    My PT raved about the spy thriller books by Olin...

    My PT raved about the spy thriller books by Olin Steinhauer. Have you read his books?
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    Woman died of a bone marrow transplant...

    Woman died of a bone marrow transplant complications, done to treat SPS:
    https://elynews.com/2019/11/27/brenda-eyre/
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    Depends on the friend. With some, sure, email...

    Depends on the friend. With some, sure, email them say you will be alone on TGIVING, might you stop by for dessert or whenever is convenient to share the holiday with them?

    It boils down to...
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    A perfect outcome virginia. Hooray for you for...

    A perfect outcome virginia. Hooray for you for speaking up!
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    Its tough.jove lost most of my friends. Mostly...

    Its tough.jove lost most of my friends. Mostly because visits are painful.
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    Virginia, thats well said.

    Virginia, thats well said.
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    I swam 1/2 mile plus 40 yards, pull on the...

    I swam 1/2 mile plus 40 yards, pull on the covers, 27 minutes. Then i cooked a nice meal for 3 nights. My friend helped clean it up :)
    Resting now, waiting for the med induced diahrrea to kick in —...
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    Swam 1/2 mile, plus 50 yards, 27 minute workout...

    Swam 1/2 mile, plus 50 yards, 27 minute workout including covering the pool.
    The biggest challenge is the side effect of the Lactulose which treats the Baclofen side effect and causes the abdomen...
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    Today I swam 1/2 mile plus 50 yards, pulled back...

    Today I swam 1/2 mile plus 50 yards, pulled back on teh pool cover. It was a 27 minute work out.
    53F at dawn, pool was 86.
  27. Brilliant....

    Brilliant....
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    Still swimming daily unless doc appt interferes...

    Still swimming daily unless doc appt interferes here and there. Walking more with rollator, less use of w/chair.
    Think IVIG and PT are helping this...
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    Am half way through The Other Wife by...

    Am half way through The Other Wife by MichaelRobotham. So far, its a compelling mystery.
    The chief investigator/psychologist, son of the victim has Parkinsons’ so thats interesting.
    He has appeared...
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    Today I swam 1/2 mile plus 50 yards and pulled...

    Today I swam 1/2 mile plus 50 yards and pulled the covers back onto the pool, in 25 minutes. The pool was 86 and the air was thankfully 60F. Gradually creating anti cold ideas before and after swim...
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    http://www.sciencepublishinggroup.com/journal/pape...

    http://www.sciencepublishinggroup.com/journal/paperinfo?journalid=252&paperId=10042296
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    And the warranty is for 10 years >..and you get...

    And the warranty is for 10 years >..and you get to try the bed 3 months, and return it free, they will even come, deflate it and put it in teh carton! How could you miss?

    The only drawback for...
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    Thank you I had a chocolate croissant a friend...

    Thank you I had a chocolate croissant a friend put in my freezer last week :)

    Again I swam over 1/2 mile, pulled cover back on pool. Pool is still 87 and the air is 53 at dawn....for more days.
    ...
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    That does not sound like a fun outing Va! ...

    That does not sound like a fun outing Va!

    FWIW, I wear a back pack, as heavy or light as I wish. I haven’t worn a purse in many years
    So many practical and cute backpacks out there. Some are...
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    I am swimming 25 minutes every day, just over a...

    I am swimming 25 minutes every day, just over a 1/2 mile , in a wetsuit jacket and wetsuit pants in the 86F pool, mid 50s air before sunrise. It is very cold getting in and getting out, but the swim...
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    https://www.jpsmjournal.com/article/S0885-3924(19)...

    https://www.jpsmjournal.com/article/S0885-3924(19)30654-2/fulltext
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    I will catch up later. AM a couple of days behind...

    I will catch up later. AM a couple of days behind on teh board.

    But, re mattress:
    I couldnt be happier since ordering my Casper Bed via internet. They deliver it right to your door. It takes...
  38. Thread: RIP Catdancer

    by Sunshine
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    Here is a clip from 4 weddings and a funeral ,...

    Here is a clip from 4 weddings and a funeral , reading the WH Auden poem:
    https://www.youtube.com/watch?v=DDXWclpGhcg
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    Thinking of all of you. We are in various levels...

    Thinking of all of you. We are in various levels of suffering, some barely suffering, others in harms way...

    We have a grape called Holiday Grape at our fruit stand this time of year. WOnder if...
  40. Thread: RIP Catdancer

    by Sunshine
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    Please tell Ralph its nice to hear from him. He...

    Please tell Ralph its nice to hear from him. He can expect to be in a blurry fog for at least 3 months. It will get better eventually, the fog, that is. ...

    Don’t worry about not using Ann’s...
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    Today I swam 25 minutes, 1/2 mile and pulle on...

    Today I swam 25 minutes, 1/2 mile and pulle on the pool cover. Then a friend came over for 60 minute visit, very nice, mostly sat and chatted. She said I looked much better than last she saw me in...
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    Do you have the post number or link on the lazy...

    Do you have the post number or link on the lazy cooking thread? Its 71 pages long; am interested in the soup you are talking about.

    Keep stock or broth in the house in those cartons. I like...
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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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    View Post

    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..
  53. 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...
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    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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    View Post

    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 ?
  74. 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!!!
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