Recent content by lisa g

It's Wednesday, checking in. The weather has been gorgeous for the last week. My pool finally hit 80 degrees. I've had them deacess my port from my radicava infusions everyday so I could enjoy pool time. Starting to get everything ready for our trek up north. We'll be staying through the first...

Kelly - hope spacing it out alittle more helps you out.

Are you taking it on an empty stomach? I break mine up during the day. 750mg after breakfast, 750mg after lunch then 500mg after dinner. So for no GI issues.

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Watching a large turtle zip inside Nathan's garden. PREDICT

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🤞Everything goes well.

I get my blood work tested every 4 months. I have been doing cycles of radicava since last June. I haven't experienced anything like your experiencing. This definitely sounds like something that should be explored.

I find the pool is really beneficial not only for minimizing pain but also for a mood boost. I feel so much better after an hour. My pool is at 79 degrees. Can't wait to get my port deacessed tomorrow and spend the weekend in the pool.

Reingrey- the only way I can explain what I feel is I compare it to a Charlie horse feeling across my ribcage. Stretching exercises given to me in PT seem to help.

TippiLeigh- I fully understand being stubborn and in denial. I am still mobile but have a balance issue that I'm working on in PT. My husband has bought me a rollator and transport chair that are still in boxes. He also bought me a cane and electric scooter. None of these items I use. My...

When I was having a bout with vertigo my physical therapist who is NCS trained (Neurological Clinical Specialist) was the one that manipulated me to reset my ear crystals. She also has showed my husband how to massage me and do proper ROM.

Kim- my granddaughters school is Southeastern University. Jessie- you go girl! Looks like fun but a little 🥶 colder than I like.

Another glorious Wednesday. I have been pain free for the last week, so I'm happy for that. Last night I was able to go to my oldest daughters house and have dinner with my other 3 grandchildren. My oldest granddaughter came down from Lakeland where she attends a Christian College. She is...

I am so sorry for your loss. Praying for peace and comfort to you and your family.

I get that cramping across my stomach at times when bending over once in a while. PT gave me stretching exercises to help. I've also increased my magnesium glycinate to 440mg's a day and drink diet tonic with quinine. At night I use either THC tincture or an edible gummy to help with sleep and...

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Great to hear. Glad it was resolved quickly and you were able to get back home 🙂

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In Florida starting on Monday anyone that is 50 can get a vaccine. It seems to be easier here now to book appointments.

Welcome Deb, we hate to see any join us here but you found the right place. We're all one big family here. We understand what everyone feels with this disease and try our best to lift each other up.

Couldn't wait until next week to chime in. I had a great day yesterday, after waiting 2 weeks after my second dose of the vaccine I finally was able to spend time with 3 of my six grandchildren 😁 I've missed so much of the babies life. I was able to hold her while sitting down. With my balance...

Wilson, Praying for a quick diagnosis and recovery

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Checking in, I've been in a funk lately. I feel some progression and finally had to come to terms that I really have this shitty disease. Before it was just a thought since I still was able to do everything. Not so much now.😡 I had to step back from my volunteering at the cat sanctuary some...

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My bad, typo 🙃

I'm keeping my fingers crossed 🤞 so far using the tens machine, taking alittle more than 440mg of magnesium glycinate a day and drinking lo-calorie tonic with quinine has eased my arm pain. My arm hasn't locked up in a few days. Will it help long term? I don't know but I'm grateful for the...

My husband purchased a Drive brand transfer chair and also purchased a Drive rollator. Relatively inexpensive. My neighborhood had gotten a Pride Go Go scooter for his wife, unfortunately she passed away. He wanted me to have it. I currently do not have to use any assistance devices but I'm glad...

I didn't spend near that amount. Amazon has the tens 7000 for $28.99. The lowest setting does provide relief for me.

Thank you for your input Joyce. Unfortunately I don't do well with pain meds or muscle relaxers. I'm working with my neurologist. I've doubled up on my magnesium and added tonic with quinine. That seems to have helped for now.

Al - I feel your pain. Second dose.... sucked. Like Ann my husband had no issues after the second shot. And yes, feeling crappy for a day or two is definitely better than having covid. Kim- Happy💉 day. I'm sure you'll do fine. Happy to hear more and more people are getting there appointments. 👍🤗

Thank you Frank - just by running down words beginning with y in my head and trying to incorporate it in a sentence .

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We could keep questionable it will challenge us

That's a mouthful Frank.

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I spoke with my neurologist last night. He knows how I feel about taking muscle relaxers or pain medication. Unfortunately I get sick to my stomach and loopy from anything like that. We agreed to double up on my magnesium glycinate and to drink some sugar free tonic with quinine to see if that...

Suck it up Kevin- you'll be fine. I glad to see so many getting the vaccine. I went today for my 6 month PFT test. Both myself and my pulmonologist were pleased. My numbers were very good even showed some improvement. One thing I am having an issue with is painful spasms. They seem to be in...

I also use atropine drops for extra saliva. 1 drop under the tongue is all you need. I use it only when I feel the need. It does dry you out quickly. As far as my Trilogy mask, I use the mask that goes over your mouth. I tried the full face that covered both mouth and nose and felt it was to...

My PT recommended to me that a TEN's (transcutaneous electrical nerve stimulation) would help with cramping pain. Does anyone use this device and could recommend a brand? I see different manufacturers.

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Why are you chasing ALS? You have had 2 clean EMG's? You stated you've had symptoms that come and go, that's not how ALS works. So many on this forum myself included wish we had clear EMG's. You need to work with your doctors to resolve your issues. But we can tell you with confidence this forum...

Kevin - glad your wife will get vaccinated.I used the medical document from my neurologist to get my vaccine. Hoping my daughter tests negative too. Especially since she spent last weekend with my other daughter helping her move into her new home.

Kim- I think it's crazy that your getting the run around on this vaccine. There is no reason they can't schedule you somewhere that medical personnel could monitor you better. My daughter the teacher has to be tested again tomorrow. They had another outbreak among teachers in her school. She's...

Getting a correct diagnosis can take awhile. I find you take it day by day. As far as medication to help slow progression I take Riluzole and do monthly infusions of Radicava.

With the rule changes in Florida for the covid vaccine by President Bidden, Kim and Kevin you should now be able to schedule an appointment. I received an email today from the St Lucie health department that they were ready to schedule my first dose. I've already had both doses but it's nice to...

I wanted to share a gadget my husband bought for me called a car cane. It helps you get in and out of the car easily. It also has a built in light, seatbelt cutter and a window shattered. It's made it easier for me to get in and out of the car.

Kim- that really sucks. They couldn't direct you anywhere? Why couldn't they send you to a vaccination site where nurses or doctors would be administering the vaccine instead of a pharmacist? Then they would be able to monitor you more closely.

I think that with any of the vaccines you'll be seeing boosters to fight the new variances. I myself have been vaccinated but if I weren't already I wouldn't hesitate which one I took to give me any protection. I hope with the J & J in mix now we'll be seeing a lot more including Pals and Cals...

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Hi Russ- as always we're sorry to see you here but say welcome

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