My Journey, PALS

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IonaB

Member
Forum Supporter
Joined
Mar 9, 2023
Messages
13
Reason
PALS
Diagnosis
02/2023
Country
US
State
CA
City
Glendale
Hi, just found this forum last night and I am so relieved to be able to share this experience with people who understand, while we support one another.

I was diagnosed 2 1/2 weeks ago by a neurologist who has no doubts, though he's sending me for 2nd opinion which I'm working on getting at the ALS Clinic at USC (Los Angeles). He put me on Riluzole for now, just started it today.

I've been through the wringer since first noticing symptoms in Spring 2022. I pushed through them, and had a wonderful summer including baptisms, weddings, and a cross country driving trip with favorite sis-in-law. (So grateful for that summer.) An MRI in September showed a frontal meningioma that seemed to explain the symptoms, so in October I had a craniotomy to excise. Then, I just kept getting weaker, which led me to here.

I am so fortunate to have a wonderful family (husband and 2 adult kids that live nearby) and friends network. I have a 3yo granddaughter, love of my life. I cry so much, but hoping to channel that into acceptance or grace or something. Will I ever stop crying at the drop of a hat? So sad to be here, and so sorry that you all are here too.
 
Lona B
Sorry you are. The people on this forum are completely wonderful. They are so ready and willing to help! I understand this disease is dreadful one minute you are on your feet and the next your flat on your back. I was diagnosed last year!! My family is also very wonderful about keeping me upbeat and going! I also found that it helps to talk to those who are going through the same thing!! Again sorry your here just wanted to say hello!
 
Sorry to welcome you here, Iona. It sounds like you have a great family to support you. Let us know how we can help.

You probably will stop crying at the drop of a hat, but if it's uncontrollable and out of proportion to the situation, that could mean emotional lability, which can be a symptom, and could be reason to ask your doc about Nuedexta.

Best,
Laurie
 
Hi and welcome. I'm so sorry you got diagnosed. There will be better days ahead once the shock wears off. I'm so glad to hear you have good support. Make sure your friends are also aware of ALS and what it means. I didn't do a great job letting my friends know about the disease and I regret that.

Feel free to ask questions, vent, or whatever helps.
 
I hope I don't sound like I'm boasting about my family and friends. Right now I'm really sapping them (my parents are in their late 80s) and I will get strong for them (with help). Thank you for the responses. It means so much.
 
IonaB. The diagnosis is a big deal, life altering, relationship challenging. It impacts you and your family. If you feel like crying, sleeping, or whatever....this is a no guilt journey. Whatever you need to do. My husband and I have had some big cries together.
Some PALS also start on over the counter TUDCA that is an ingredient in Relyvrio. You can ask your neurologist.
Try to take time for some fun. When my husband was diagnosed, we had to cancel a cruise in Europe. So we went on the Circle Line Cruise around Manhattan.
 
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Hi lonaB. My name is Jim. I had symptoms starting 10 years ago and dx 8 years ago. I'm now paralyzed from the shoulders down. I have a trach and feeding tube. You will be surprised what you can adapt to if you choose to. I'm close by in Torrance. If you ever need help with ideas for home automation or computer and phone access you are welcome to come by. All the best
 
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Thank you. I've been trying to just "push through whatever this is" for so long, and I'm tired, it's true. I love the Circle Line story. We also just cancelled a "bucket list" European river cruise. I took a quick overnight trip up to Ojai with my sister, and my husband and I spent 2 days in the desert. Going back next month with my daughter. Planning to get myself to NJ (where I'm from) and the Catskills (where my husband is from) this summer.
 
Hi Jim, Thanks for reaching out. I'm sorry about your Dx and your words about adapting if I choose to are the kind of words I need to hear. I will definitely need ideas based on your expertise. My son is pretty good with tech, so maybe we'll do that together. Best to you.
 
poet1973, Thank you for your kind and upbeat words. I'm sorry to learn of your Dx, and so glad that you have supportive family. And I agree, it helps to have PALS to talk to.
 
KimT, I'm also sorry about your diagnosis. I have found reading your posts to be very helpful. And I appreciate the advice about giving family and especially friends more info. Three weeks ago, I knew nothing about ALS other than the Ice Bucket Challenge, so that is a good reminder.
 
Just an update/check in. Three weeks today since the Dx. I had to check the calendar, time is very messed up for me. In the good news department, I weighed myself and was relieved to see that I haven't lost weight, despite obvious and sobering evidence of muscle weakness in arms and legs. I'm a tall woman (I like to think I'm still 5'10") and losing weight has always been a struggle. Eating all the time feels very strange to me, but I'm glad I'm still able to eat.

I'm hoping to hear on my ALS clinic referral soon, and also my SSID/Medicare. My husband is putting a lot of faith into the idea that the clinic will be able to explain all and lay out the future. Until then, he doesn't want to speculate. He is a very fact-based person, and it will be easier when he hears some reality (there's no crystal ball) from the medical profession.

Speaking of planning, today I was going to: 1. do some laundry, 2. grocery shop, 3. start on taxes (we are retired from working for other people, but I manage a few rental properties we own). Instead, I think I'll go to store for just the essentials and then listen to my Audible book. Oh! I did take a shower! Yay me.

Knowing that you are all out there is very comforting. Hugs.
Gayle
 
I filled for my SSDI as soon as I had my dx, much the same as you. I'm very meticulous and everything went through with no issues.
Your results might be different regarding medical assistance to help guide you. In my experience, help is pretty limited. The main thing I got from the medical professionals is the equipment. From there it's up to me to read about everything and learn how to adjust settings and operate everything. This has worked out better than relying on someone else to get everything right.
Like you said, nobody can really predict the progression. In my case it was very linear but at certain points you reach the tipping point. For instance you will finally just have to give up walking because it is just too risky. Once you stop it will quickly become impossible.. don't use it you lose it. I regret not eating more junk food.. I have not eaten anything in a year and a half and I miss it so!
 
Thanks Jim! I just added Doritos to my shopping list! I will eat several in your honor.
 
Gayle,

I was shocked at how fast I was approved for SSDI. I was still working when I got diagnosed but stopped and used up all my short-term leave. I took my SSDI packet to the SS office. I prepared it myself and added copies of tests and letters from two doctors. It was approved in less than two weeks. There were a lot of financial decisions I had to make since I lived alone, no husband or kids.

Honestly, I had no idea I'd last this long. I did have a couple of falls (avoid them at all costs) that set me back and caused a lot of pain that I still deal with, but I've had some very nice days and even days where I nearly forgot I had ALS.

I still eat healthy 90% of the time but after the hurricanes we had last Fall I fell off the health bandwagon big time. My niece was visiting my brother and she came over for dinner. She loves to eat so we had a food fest.

@Jimi I know you know a lot about automation. I might also need to pick your brain since my condo has Siri, Alexa, and a host of other things that don't communicate with one another. My A/C runs off Alexa commands by voice and also has an App I can use on my iPhone.

I'm curious how to begin setting up automatic lights and I also want something that opens my door automatically so I can get in and out with my PWC.
 
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