Christine Moretti
Forum Replies Created
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I have been on Radicava since October 2017. Since the pandemic, I have been fortunate to do them at home now. I feel as though Radicava has been helpful in my slow progression so far, fingers crossed. In 2016, I was diagnosed with PLS. I do not know if Radicava is more beneficial for PLS patients. For example, does it work more efficiently on UMN? I fervently hope that effective treatments emerge for all of us.
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My feet and hands are always cold. Luckily, I don’t really have an issue with my feet being swollen. I agree with the other comments that blankets (and gloves) are my friends.
Being barefoot is rather uncomfortable due to my neuropathy, but I did find these stretchy shoes called Fitkicks that allow my feet to feel stable yet flexible. They even go over my brace.
Here’s the link if anyone is interested. They are quite comfy.
https://fitkicks.com/ -
Hi Richard, I was intrigued when I read your post. One, I think it further illustrates how vital biomarkers are in ALS as it seems most trials stress the importance of early intervention, although this study does indicate late stage use as you said.
The other thing that struck me was the drug itself. I am wondering what type of side effects, sedation, hallucinations, etc. patients would experience. After looking it up online, ketamine sure sounds like an intense drug.
Always with an open mind, I hope for success for this drug. I am all for research of any kind and orphan drugs are a good target.
Thanks for sharing.
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As someone with PLS, I was so excited reading this press release. Thanks for sharing this, Richard. Research on UMN will help all of us — ALS, PLS and HSP!
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As with just about all ALS patients, my journey to diagnosis was a long one. It was the day before Thanksgiving 2015 when I finally met with the doctor who would change my life forever with the words “You have PLS”. His name is Dr. Goran Rakocevic, an ALS expert who also worked at NIH for ten years. He was a straight shooter, but at the same time the most empathetic and caring doctor I’ve ever known in my life. Dr. Rakocevic has since moved out of the area but he will always hold a special place in my heart for his warmth and compassion. His new clinic is very lucky to have him. I wish all patients to have the same kind experience.
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I have waited four long years to vote for the Democrat who would run against Trump. It’s been a long national nightmare that I am more than anxious to see end. My personal belief is that we need elected officials who believe in science, believe in research to find treatments and cures for all diseases. ALS research is accelerating. A government that will a partner in that research is vitally important to me.
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Marianne, that’s a good idea to alternate AM and PM recording. Thanks. Good luck to you.
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Fortunately, I am one of the lucky patients to be enrolled in this new speech study for EverythingALS. It’s easy to do once (or more if you choose) a week. You’re taken through a series of screens and while being asked to repeat and read as prompted. At the end of the video, you will be asked to complete an ALS-FRS, ROADS, or similar type health/functionality questions. It’s for pALS, all MND patients, as well as healthy volunteers. It probably take me less than 10 minutes for each session. It truly makes me so happy to participate in ALS research and give back to the community.
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<p style=”text-align: left;”>Many, many years ago, I read “Tuesdays with Morrie” by Mitch Albom. I remember crying my eyes out by the end. My blood ran cold at the thought of such a horrific disease. Never in my wildest dreams did I ever imagine being affected by a MND disease. In 2016, I was diagnosed with PLS. You just never know what curveballs life will throw at you — baseball pun intended. Sending out my best to all of my fellow pALS.</p>
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Two weeks ago, my husband and I went to our local CVS and got our flu shots. As I turned 65 in May this year, I got the first of my two pneumonia shots. Now all we need is that COVID vaccine(s) to be available ?!
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Hi Rick, I’ve been on Rilizole since about September 2016. I have had no side effects. I did hear from a couple fellow pALS that they experienced some stomach issues and/or bowel issues, but I can honestly say I have had no issues. Good luck with your decision.
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I have been on Radicava since October 2017, right after it entered the US. I have to say I think it’s been beneficial for me. In January 2016, I was DX’d with PLS. Not sure if PLS vs. ALS makes a difference or not. There is a trial for Radicava efficacy called REFINE-ALS to get a better handle on the slowing of progression with this drug. Good luck with your infusions.
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I couldn’t agree more with Jay. I ha w been on Radicava since October 2017. In fir a penny, in for a pound when it comes to trying whatever I can to fight this disease.
One caveat, though, I was DX’d with PLS in 2016 and have been fortunate to have my progression remain slow. That being said, I’d like to think that the infusions are beneficial in some way.
I no longer work and my insurance does not cover at home infusions, so I go to a nearby neurology infusion center for treatment. It’s all good.
My port has been in since the second infusion. Fingers crossed. The needle is only slightly annoying the first day and you do have to take care to not get it wet. I have had zero side effects on Radicava.
Wishing you the best with your decision and experience with the drug.
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My preferred in-home exercise program involves Dagmar’s ALS YouTube videos. I truly enjoy them and feel stretched and relaxed after doing a few videos.
Having been an avid walker for many years before DX, I still find “mall walking” with my rollator and my husband to be highly therapeutic. We try and accomplish a half hour walk three to five days a week.
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Thank you, Dagmar. Sending all best wishes to you — and everyone here. ?
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Hi Dagmar, thank you for your post and for all the interesting comments from fellow readers of ALS News Today.
In January 2016, I was diagnosed with PLS. My drug regimen includes Riluzole and Radicava infusions. In addition, I take baclofen for spasms and gapabentin for neuropathy. I also have a meningioma brain tumor which causes seizures so I take the generic form of Keppra.
As to supplements, my doctor recommended CoQ10, 200 mg l, 3x a day. Since I had a -4 vitamin result a year or so prior to DX, I also take 5,000-6,000 units a day of vitamin D.
My diet is loosely based on Paleo, but I do cheat on a Friday and Saturday night and enjoy sweet treats and some carbs. Sadly, I’ve never been able to do a successful sugar detox.
I am thankful my progression has been slow and will continue to fight this disease in anyway I can
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Amanda, I excited for you with this new treatment and would love to hear all about your journey and hopeful good news with this drug. Sending all my best for you (and everyone on this thread). May your progression halt and may regain function.
Best,Christine