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    Oh Laz, I am so glad John is home with you....

    Oh Laz, I am so glad John is home with you. Worried about you two, was I.
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    Yesterday I had 1529 steps. Most of my steps...

    Yesterday I had 1529 steps. Most of my steps occur mid to late afternoon. At that time, there is increasing amounts of anti spasm meds in me, especially after 4 Pm. Making steps greatly increased. ...
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    Whoa! How do you print from your iPhone? !

    Whoa! How do you print from your iPhone? !
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    Today I swam 1/2 mile. Yesterday I had 1584...

    Today I swam 1/2 mile. Yesterday I had 1584 steps.
    Now I am trying to coordinate pharmacy with asthma doc so I can have a nebulizer with its meds in house and directions on its use. Hoping it works...
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    Oh man Renee— good sense of humor, but not a fun ride at all.

    I hope your care is good. Do they use hyperbaric chamber to help you heal?
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    Yesterday 1200 steps. Today, swam 1/2 mile,...

    Yesterday 1200 steps.

    Today, swam 1/2 mile, cooked a side dish. Resting up for PT at home person. Which will mean walking. FInally got an appt with a pulmonoloigst in 3 weeks— that was like a...
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    What a freaking nightmare. Same issue here :...

    What a freaking nightmare.

    Same issue here : The local hospital received two F’s from Medicare. The ambulance will only take you there. However, once you are there, you can insist on a transfer to...
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    Pediatric Stiff Person Syndrome

    https://www.sciencedirect.com/science/article/abs/pii/S0887899420303192

    Interesting article, even if brief. The length of time to diagnose is unfortunate. The article doesn’t say if they first...
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    Take a large cutting knife. Put it on its side so...

    Take a large cutting knife. Put it on its side so that the broad side of the blade (not the sharp side) lays across a garlic clove. With your other hand, make a fist and bang it down BAM on top of...
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    Yesterday I walked 1650 steps. Today is IVIG, so...

    Yesterday I walked 1650 steps.
    Today is IVIG, so I barely walk then as it triggers spasms for some reason at IVIG.
    So, my before and after steps will not be as high.
    Agate has inspired me to...
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    Yes, my old one had to be cleaned with a...

    Yes, my old one had to be cleaned with a toothbrush, after years of using toothpicks, I found the tooth brush just as effective, but still, no where as easy as my current one, which just washes under...
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    Any tricks, or do you just wait it out? Still...

    Any tricks, or do you just wait it out? Still waiting to see a Pulmonoloigst about the breathing issue.
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    I am still reading Hearts of ATlantis when I am...

    I am still reading Hearts of ATlantis when I am in my bedroom resting.
    In the living room I am reading Michael Connelly’s new book Fair Warning, the main character is Jack McKvoy, and it’s based on...
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    My DD was in that earthquake. Its unnerving as...

    My DD was in that earthquake. Its unnerving as you don’t know if it will stop and what will come next. As a mom, it’s one more thing to worry: Covid, Smoke, Earthquakes.

    Tomorrow is IVIG. I have...
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    I bought this garlic press and LOVE it, and it is...

    I bought this garlic press and LOVE it, and it is so easy to clean too:
    And takes little strength to use. ...
  16. Joy, you are tough and resourceful! What is a...

    Joy, you are tough and resourceful!

    What is a plant roller?
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    Yesterday I stepped 1139 . Today I swam 1/2...

    Yesterday I stepped 1139 .
    Today I swam 1/2 mile, did my pills for the week (It takes a full hour!) Prepared crust for tonight’s fish. Will nap soon and then make teh salad.
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    This was amazing and not hard:...

    This was amazing and not hard:
    https://www.finecooking.com/recipe/roasted-carrots-shallots-with-oil-cured-olives-gremolata
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    Rose, your ability to adapt to extreme stress,...

    Rose, your ability to adapt to extreme stress, loss and suffering is stunning.

    Do you also spray yourselves with Mosquito repellant chemical?

    DId you know that some people attract mosquitos...
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    Today I stepped 1,039 which was great since I...

    Today I stepped 1,039 which was great since I could barely walk until about 2 PM , I blame it onthe flue shot yesterday.
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    Yes I wear it along with my life alert. No...

    Yes I wear it along with my life alert. No problem.
    Yesterday I stunned myself with 1018 steps. It is very accurate. I have frequently checked it. It doesnt measure small amounts of steps such as...
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    Rose, In Florida, people have this zapper thing...

    Rose,
    In Florida, people have this zapper thing they hang up outdoors near where they are going to be talking, i.e. an open porch etc. The mosquitos
    Are drawn to the light and get zapped and ppl...
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    Good idea agate, the plan sounds promising.

    Good idea agate, the plan sounds promising.
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    It is 4:22 pm and my step count for today is 914...

    It is 4:22 pm and my step count for today is 914 steps. I watch the instrument and it appears pretty accurate: slight undercount as it doesnt count small excursions of like 5 steps.You wear it like a...
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    My DD recommended the series. I watched the first...

    My DD recommended the series. I watched the first episode and thought it was unbelievable. I told her that, she said, “Actually, it is based on the Rupert Murdoch family with a few tweaks to avoid...
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    Stiff person syndrome and breathing

    This is a more personal aside. I have struggled with asthma for a lifetime. It was under control until last month. In addition, there is a stiffening of muscles at the bottom of the front of my rib...
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    I am speechless reading the woes Rose and agate...

    I am speechless reading the woes Rose and agate describe . It brings to mind a phrase from “succession”, which is based on theRupert Murdoch family. When there are avoidable deaths on their cruise...
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    I swam 1/2 mile today. I will get my flu shot...

    I swam 1/2 mile today. I will get my flu shot today too. I am step counting with my FitBud. The past 5 days showed an average of 350-450 steps. I am using it to be more mindful of inching up the step...
  29. Thank you agate. I will view the video later this...

    Thank you agate. I will view the video later this morning after my chores.
  30. Any tricks, devices to get off the floor if you falll down and are unhurt.

    Because of SPS, my shins will spasm if I get on teh floor and try to get up. I am looking for a device that might do the trick. I have grab bars, but I cannot reach them from the floor. Something...
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    We got possums, and they don’t worry me. We also have armadillos that carry Leprosy but they stay away.
    Raccoons , and bats are notorious for carrying rabies. I would steer clear of them.
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    So much suffering. Seems like since the past 2...

    So much suffering. Seems like since the past 2 years, so much suffering here on our board. THe fires are horrible: is it biblical? Pestilence, Death, fire, flooding...all brought to you by our...
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    Hi suzeQ and all. Am still here. Struggling with...

    Hi suzeQ and all.
    Am still here. Struggling with asthma, a lifelong condition that flared up several weeks ago. Today is my annual with PCP , so I might not be around much, too much to do when get...
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    ANN What do you mean her doc has sent quest to...

    ANN
    What do you mean her doc has sent quest to your mom. How does that work?
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    SOLD! I just bought the FitBud you recommended....

    SOLD!
    I just bought the FitBud you recommended.
    They say you can wear it on your hip, or as a lanyard, or in your pocket. WTH? I though you strap it to a leg or ankle
    How does it measure steps?
    ...
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    Pedometer question

    I would like to be able to roughly count my steps as an incentive.

    My apple iwatch is supposed to do that, but all I can see is other aspects like heart rate, time moving etc.

    Those of you who...
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    I echo what Rose said. Actually, I would go down...

    I echo what Rose said.
    Actually, I would go down to the office and sit in the waiting room until you got the prescription. Ask for a 90 day supply. That will give you time to establish yourself with...
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    I swam yesterday and today 1/2 miles each. I...

    I swam yesterday and today 1/2 miles each. I chopped up onion and mushroom to prep for tomorrow’s lasagna. I made the salad for tonight to complement a shrimp dish I made two days ago. Done and done....
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    Agreed. Already I am starting to think about how...

    Agreed. Already I am starting to think about how to re-engineer the bubble wrap pool cover to make it last a few more months, with DH. As around mid OCt we will need it.

    Looking toward November...
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    September 2020: Keep on Moving

    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...
  41. Stiff Person Syndrome and Ocular Manefestations

    https://eyewiki.aao.org/Neuro-ophthalmologic_Manifestations_of_Anti-GAD_Antibody_Syndrome
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    Today I swam 1/2 mile. I am so glad to hear...

    Today I swam 1/2 mile.
    I am so glad to hear about Jeanie. I wish some health aide, or OT or PT can go examine her living situation and possibly make recommendations to prevent this from happening...
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    Swam 1/2 mile today. Rough day.

    Swam 1/2 mile today. Rough day.
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    No worries about lack of guards. Just go to a...

    No worries about lack of guards. Just go to a beach where there are other surfers. Surfers watch out for one another. And your teacher will watch you non stop and not put you in areas of rip tides...
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    Those waves look like perfect learning waves....

    Those waves look like perfect learning waves. Have you ever though of getting a lesson? It’s something you will never forget!!!
    Rent a foam 9 foot board, its like surfing a door. Its lightweight and...
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    In teh infusion center they have this great fully reclining chair to almost a bed level. You use a lever and your body glides it forward. I like it cuz it has a small foot print and can be inches...
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    Ann, can you spill the beans on the chicken with...

    Ann, can you spill the beans on the chicken with ginger recipe?
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    Gorgeous photos Ann! Nice to have a picture of...

    Gorgeous photos Ann! Nice to have a picture of you too. :)
    Was the ocean too cold to go into?
  49. My acquaintance was on Ocrevus. She died of a...

    My acquaintance was on Ocrevus. She died of a virulent cancer after a year. MIght be unrelated or related.
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    Today I swam 1/2 mile. Resting now. PT soon. RN...

    Today I swam 1/2 mile. Resting now. PT soon. RN coming to listen to lungs also. Asthma has flared up past month. X-ray this week.
  51. My doc has prescribed it today. The pharmacist...

    My doc has prescribed it today. The pharmacist will coordinate with him to get the right dose etc.

    It is much cheaper than Nayzilam. You don’t have to keep it in the fridge. You don’t have to use...
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    I swam yesterday 1/2 mile and cooked side dishes...

    I swam yesterday 1/2 mile and cooked side dishes for yesterday and today after IVIG all day. Been struggling with kick up of asthma; and post Moh’s surgery...and feelings of being overwhelmed.

    I...
  53. Biogen conference in Feb. became a superspreader of COVID

    Not a surprise here, based on my experience with Biogen in around 2004:

    https://www.cnn.com/2020/08/25/health/covid-19-superspreading-boston-study/index.html
  54. View Post

    Weren’t there more cancer incidents on Ocrevus vs Rituxan too?
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    Virginia, As an older child and an adolescent, I...

    Virginia,
    As an older child and an adolescent, I read as many books about Hitler as I could find. I grew up in a neighborhood of survivors of concentration camps with tattoos plainly evident. I...
  56. I had lots and lots of small cards of all...

    I had lots and lots of small cards of all different colors of embroidery thread, which is six strands thick and stays together as six strands. I only had to glue the ends of the thread. Each stripe...
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    Great photo. Read the book The Great Influenza...

    Great photo.
    Read the book The Great Influenza by John Barrie when there was hint H1N1 could devour the country....a terrific read and now it is timely.

    I always remember the phrase, “Sick at...
  58. Beautifying Medical stuff on my dining room (and only) table.

    I got sick of the dining room table looking so medical with certain bottles looming at the ready. It is in the great room and the dining area is open next to the LR and Kitchen and “office”, actually...
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    I swam 1/2 mile and then got a fleeting foot...

    I swam 1/2 mile and then got a fleeting foot spasm in the shower. I took a 2 hour nap, which made up for the time at least from the night awakenings from a spasm and for dosing.

    Am grateful DH...
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    I am thinking of Jeanie today, and hoping she is...

    I am thinking of Jeanie today, and hoping she is comfortable.

    I am watching the tropics. I do not like that INVEST (98L) that is east of the weaker invest. It looks like in a week it will have...
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    Are you able to use the Yale nuero’s. Years ago Timothy Vollmer MD was there and I went to him for another opinion. I was very impressed with his clinical skills, ... he was the best of the best....
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    One mile wALK! I CAN IMAGINE IT! Good job Ann! I...

    One mile wALK! I CAN IMAGINE IT! Good job Ann! I used to love to walk, do anything physical. I recall telling my neuro when first dxd SPS, that I was okay losing my thinking abilities, but don’t want...
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    One mile wALK! I CAN IMAGINE IT! Good job Ann! I...

    One mile wALK! I CAN IMAGINE IT! Good job Ann! I used to love to walk, do anything physical. I recall telling my neuro when first dxd SPS, that I was okay losing my thinking abilities, but don’t want...
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    Screw them. They have no clue what if feels like...

    Screw them. They have no clue what if feels like to be you....
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    Good advice for people who feel unsafe about voting in person but now fear the USPS will be unable to deliver a “mail-in” ballot in a timely fashion. (From FB)

    There is a way around it:
    1....
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    THanks agate. Please let Jim know we are all...

    THanks agate. Please let Jim know we are all rooting for Jeanie.

    I think there is a home health service where they come to your home, and trouble shoot what about the home set up might contribute...
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    THis is cause for celebration!!! How exciting...

    THis is cause for celebration!!! How exciting that you are ABLE to do this, and that you also then DO IT!
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    Swam 1/2 mile and made the crust for the fish....

    Swam 1/2 mile and made the crust for the fish. Resting
    Nurse comes at noon to do ultrasound of bladder. This is for 5 consecutive days or so.
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    UTI would be a good thing. What would be a sad...

    UTI would be a good thing.
    What would be a sad thing is if I am not emptying bladder completely. Because I think the next step is self cathing
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    So, here is what is happening. I suspected a...

    So, here is what is happening.
    I suspected a UTI, so I called the urologist. The secretary must have a flag near my name, becasue when I said, “I can take any appt I can get a ride for”, she said,...
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    By all means, if you have her phone number, call....

    By all means, if you have her phone number, call. She can simply ignore the call if she doesn’t want to talk?
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    More later, or tomorrow... Worried about...

    More later, or tomorrow...

    Worried about Jeanie. We didn’t have any bad storms that would knock out power for so long....she and I get similar storms. Maybe up to 8 hours of no power if youre in a...
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    IVIG all day today.

    IVIG all day today.
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    Intrathecal Baclofen Pump: Research

    This is a study of the use of the pump vs placebo. A drawback is that it is only a handful of subjects.

    It shows the pump helps when measuring EMG activity in the muscles. But when the patient...
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    Swam 1/2 mile today and yesterday. Tomrrow is...

    Swam 1/2 mile today and yesterday. Tomrrow is IVIG all day.
    Cooked complex side dish. Resting the rest of the day.
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