Looking for Advice

[Slick24]

My best friend was diagnosed with ALS about a year ago. She confides in me a lot with the things that she is experiencing and I attempt to comfort her and be there for her as best I can. However, this is my first experience being around ALS. I have tried to educate myself but I am reaching out to see if others have experienced similar symptoms as her. My friend still has decent use of her legs, arms and hands. However, she gets very fatigued and needs to lay down a lot to recharge. I am assuming that feeling whipped out and fatigued is common with ALS but I just don't know. Is this common? Also she has been very forgetful and seems to have issues remembering stuff. Does anyone know if forgetfulness and memory loss are part of ALS? From what I have read it does not seem like it should affect memory but in her case it is greatly. She feels alone and at times uses this to fuel the fact that maybe she doesn't have it because she feels that others are not experiencing fatigue and memory loss. Does anyone have experience with the ALS patient being fatigued and having memory loss?

 

[Nikki J]

Thank you for being her friend. Maybe you can encourage her to join us here?

Fatigue is a big issue for some PALS, less so for others, but we use a great deal of energy performing what seem to be simple tasks.

Some cognitive impairment happens in about 50% of PALS. The more common issues are executive function and loss of empathy and a percentage of PALS have full blown FTD- a form of dementia. My mom had FTD/ ALS but her first symptom was memory loss

You say she has " decent use" of her extremities? But some impairment? Fatigue and forgetfulness alone would not add up to ALS so I am thinking she has other symptoms? If she has not had 2 opinions confirming ALS with at least one, preferably both coming from a neuromuscular specialist she should be getting those.

Good luck to both of you

 

[Slick24]

Thank you so much for your reply. I really appreciate you taking the time to share your knowledge with me. Yes, she has other impairments. She experiences muscle cramping, twitching and tightness through out various areas of her body. She received her diagnose from a neuromuscular specialist but she has not had a second opinion. Probably wouldn't hurt to get one but just in the last 6 months I have whiteness fairly rapid decline in how she can function. My biggest concern is her holding on to hope of a misdiagnosis which results in her not taking the time to do the things she wants now while she is able. I appreciate your insight into the fatigue and memory loss that I asked about. It helps to know that these are fairly common issues that PALS experience. Thank you! Best of luck to you too.

 

[Vincent]

Welcome to my world. I was diagnosed 2 years ago and I can still walk, with braces, my arms aren't what they used to be, but they still work. I can talk as well as I always have, but swallowing is getting to be an issue. My biggest problem is breathing. My FVC numbers are sub 50% which brings up all sorts of problems. Getting enough oxygen isn't the issue, clearing carbon dioxide is. This leads to extreme fatigue and a sort of brain fog that makes finding words almost impossible. and it creeps up on you so you don't notice. Has she tried using a bipap machine? If not, she should. Impaired thinking could be FTD or it could be something as simple as needing ventalatory support. Changed things for me.
Vincent

 

[Green Queen]

Slick, you are an awesome friend.

 

[Laraliu]

Slick,
Your an awesome friend. I've found that since my diagnosis that I'm often forgetfull and disorganized. Since this is a complete turnaround from my pre-diagnosis self I was concerned. I've now spent 9 months in counseling, and realize that my forgetfulness and disorganization came from being preoccupied with the physical realities, even simple tasks take a huge amount of energy, and the emotional drain of knowing I have a limited lifespan. Encourage your friend to see a counselor, hope fully one that specializes in grief and illnesses. Talking things through with someone outside of my life helped me so much, I still see her every two weeks. I'm too reserved and too self concious to tell my friends and family the inner pain and crazy thoughts that came with diagnosis, so seeing a professional allowed me to get it out, make plans for the worst, and get over it. Now, I'm 80% of the organized, go-getter that I started life as, and I always have a calendar ap and a notepad close by to help me get through. At least I'm not preoccupied with this disease and worrying about things I can't change.