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Is this how this works
My first post hope I am doing this correctly
I have been doing pretty good with things till this week. Suddenly I am very tired weak can hardly walk all taking very small steps with assistance. Arms and hands are weak and slow to respond I cried yesterday for no good reason not tars I mean slobber crying.
I don’t see my neurologist till Oct 29 again should I reach out or is this just part of it.
Thank you in advance for any replies
Allen
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11 Replies
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Allen,
I’m sorry that you are struggling right now. I too have days where my body can feel sluggish. And I also have plenty of days where even amid the challenges my spirit is strong.
This community space is wonderful for hearing from others that you are not alone.
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I’m so sorry you’re struggling right now. I ugly cry a lot! We go through so many emotions everyday! Sometimes it’s good to get it out!
As far as your weakness and other symptoms, it never hurts to get in touch with your doctor.
Good luck and I hope you’re feeling a little better emotionally đź’—
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Hi AAB,
You are doing fine with your post.
From your Bio, I see you have a probable diagnosis of ALS right now. That is quite an abrupt change and scary, I am sure. ALS does not have a standard rate of progression – everyone is different. You can have changes like you had or reach a plateau for a while; you never know what is next.
Both of these are part of the disease. Are you on any medications for either of those issues right now? If not, I would call your neurologist and ask them for advice. The end of October is a long to wait.
I had both uncontrolled crying and laughing at one point. It is called the Pseudobulbar Affect. Your neurologist can prescribe a med to help with that. Here is a link to Mayo’s description.
https://www.mayoclinic.org/diseases-conditions/pseudobulbar-affect/symptoms-causes/syc-20353737
I also have weakness in my legs, but my arms are fine. I am in a power wheelchair but can still transfer to a chair or toilet using a rollator walker or grab bars. Your neurologist probably will have medication to help with that, too. I would suggest getting a rollator walker for stability to avoid falls.
I hope this helps. You are not alone!
Len
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I too am experiencing a very slow walking pace and my gait is wider. Left leg bends funny at knee while walking. My arms, primarily left side, are much weaker. Went dress shopping with my mother last week and had to have her move the dresses on the rack so I could look at them. My arms couldn’t do it. That was tough to experience. Also, my hands are becoming thin. I’ve cried pretty hard over that.
Keep laughter in your life. It helps a lot!
Thinking of you and my PALS.
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I guess this would progress slowly one bite at a time.
Thanks for the encouragement from you all
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Hi Allen,
Definitely call your neurologist and report your symptoms. Contact the ALS Association in your area or the Steve Gleason fund for help with supplies that you might need. Avoid a fall for sure. My husband got a Jazzy Carbon wheelchair loaned to him from the ALS association and it gave him so much better quality of life. Disease progression is different for everyone. For my husband, it was 18 months from first symtom to taking his last breath. Is there any place in your area where they do ALS Clinic? That is where you have one appointment once every 3 months and all the different disciplines come to you instead of you going to a million appointments. Ugly cry all you want. In the meantime try to get all the help and support that you need.
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I mean I guess I thought this would progress slowly
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Hello Allen,
Sorry that your day went sour. It happens to all of us. Hang in there and dig in. I pray the rosary everyday and simply-it gives me peace. If walking becomes hard, get a rollator for safety. We visited a local civic organization and they gave it to me. Who needs a fall anyway. If your fingers give you trouble, and you can hold a pencil, typing an email with a pencil will improve your task. In fact, I am using a pencil here. So I don’t get tired standing in a shower, we put in a shower chair in the shower. It’s great. Makes getting clean fun again/ not exhausting.
I hope this helps you!
Mike
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Hello AAB, as in previous replies to your question – – ALS symptoms are different for every patient and progress (or even plateau) at differing rates.
You should however contact your doctor or ALS Assoc. Care Coordinator and discuss your latest changes with them. You may not need such drastic measures as a wheelchair yet, but you do need to begin incorporating measures that provide safety and maintain the quality of your life.
There are things you can do that have been shown to slow symptoms: proper medication, healthy lifestyle habits, gentle exercise, using proper medical equipment, and practicing mindfulness.
Also, I invite you to check out my ALS and Wellness Blog where I share tips that helped me these past 14 years. Best wishes to you.
https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html
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Nice support from all of you I do thank you. My son bought me a jazzy carbon chair and I love it. I just hate to give in and use it. My legs are almost useless but I just keep trying to walk and hang on to things. Good thing about a cluttered house with to much furniture is you seldom hit the floor🤩I have read your article several actually. Like them a lot and they make sense I have even thought about physical therapy. I have turned it down twice now thinking I would overcome this thing myself. Don’t laugh at me.
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