What is on your medical calendar for February?

[Community Member]

Has the winter weather impeded any of your appointments last month? What alternative arrangements have you made to get appointments that you can share with us? Any medical appointments coming up that you feel stressed about?

[Community Member]

As most of you know I’m a SOD1er and on QALSody (Tofersen). It has been great and has stopped the progression of my ALS for the most part. This Tuesday I go to the ALS doctor and get the QALSody, and a full neuro exam for the research portion. Yeah, I get another EMG. I’m not particularly fond of the EMGs. I get one every 4 months.

I suspect I’ll find out if skipping or delaying the treatments caused the ALS to progress. (<mark>an inflammation of the spinal cord</mark>, and the bundle of nerves that runs from the brain to the rest of the body. It can damage the spinal cord’s myelin sheath, the fatty layer that insulates and protects the nerves.) I don’t feel weaker and haven’t lost any skills since being in the hospital in September. Nearly all the myelitis symptoms have diminished.

[Community Member]

Thanks for providing so much information about your experience. I’m starting Qalsody on 2/28. How long were you receiving treatment before you noticed any improvement?How do you maintain a positive attitude? Before dealing with this I was very independent. Now I’m totally dependent on my family. They’re amazingly supportive but I still sometimes feel like a liability. Thanks again.

[Community Member]

I started QALSody on July 12, 2023. I noticed small changes in about 4-6 months. Sometimes I would just tell myself it was a good day so that I didn’t get my hopes up. Then I had a lot of good days, and more great days! I’m nowhere near my physical self before ALS, but I am working and independent. I’m slow, I get exhausted very quickly, I can’t always complete my chores without help – moving the washing machine, yard and house work….I can’t run, jump or hop but I don’t want to run, jump or hop 🙂

As for my attitude, I’m not sure how I stay positive. In part it is because I know how important a positive attitude is to my health. I’m single and I don’t know how I would survive if I had lost the ability to walk or something impeding my independence. I don’t really know how positive I would be under those circumstances. I hope that the treatment continues to work and I don’t have to find out. I also hope that I can maintain positive attitude if and when I do decline. I have such great friends, I love both of my jobs (Here, and as a school psychologist), where I live…..my life is very good. I can say when I was diagnosed, I promised myself I would wake up and account for all the good things in my life. Starting the day off like that helps. If you ever want to talk about ALS, the treatments or anything related let me know! I will definitely make the time. By the way, the treatments aren’t as bad as they sound 🙂 I’ll be thinking of you tomorrow. Best of luck!

Amanda

[Community Member]

My calendar stays very full.

PT twice a week, massages, respiratory therapist, OT, eye Dr., Dentist, Eye Gaze tech, speech, nutritionist, podiatrist, General Practitioner, blood draws, clinic day …. should I go on?

[Community Member]

You do have a full calendar. I hope everything went OK.

[Community Member]

We have an appointment this Friday February 21st. It’s our 2nd since my husband’s diagnosis in December. He’s had the EMG, MRI at an ALS research center. Met with nutritionist, and the ” I Can talk clinic”

Just yesterday my husband banked 200 sentences

My questions for the Doctor are, does he have sporadic or bulbar?

[Community Member]

I believe that sporadic just means that there is not identified genetic link – genetic ALS.

[Community Member]

Hope your appt. on the 21st was a good one. How did it go?

[Community Member]

Keep doing CVAC system teraphies and looking forward how to get a Scenar device.