Panic attack

[faithandlove]

I had a rough night last night. I finally reached another loss and it is time to use the hoyer lift. I was hoping my legs would continue to work for a couple more months because my husband is having hip replacement surgery on Monday and he is my CALS from 2 pm until 9 am. (I have care lined up while he is in the hospital, and when he returns)

I tried to get off the commode and it took 4 attempts. I finally got on my hospital bed, and my husband got my legs in, blankets over me, and my face mask (trilogy). At 2 am I woke up, pulled the mask off, and realized I could not move my legs, and could not turn to the right or left. I forgot I had ALS and, with the mask on, I felt like I was buried alive in a box and I had to get out. I screamed for my husband, but he did not hear me until I was in full panic mode. It took me awhile to calm down, but with his help I ended sleeping in my wheelchair.

I've always been a super strong woman, but this monster is taking that away too. I hate what is does to all of us. Sometimes it is just too much to handle.

Hugs,
Deb

 

[ShiftKicker]

I am so sorry. What a terrible experience. It is a monster.

 

[GregK]

I found that the nose-only or nose pillow masks were less claustrophobic.

 

[scaredwifetx]

I just want to send you a virtual hug. I am so sorry

 

[affected]

I can't imagine the horror even after going through it with my husband. This is a monster and I'll add another hug. Thank you for sharing what happened, you know it will actually help others who are feeling panic xxx

 

[WendyWooG]

Deb
Big hugs it's horrible, we seem to be on a very similar timeline as far as progression goes. I understand it's hard and unfair this rotten illness.

Thinking of you

Wendy xx

 

[Nana5xs]

Deb,

It is a monster. I used to be a super strong woman too. It is degrading, to have someone wipe your butt.

Sending you the biggest hugs possible.

Susan

 

[Duker52]

Deb, comforting hugs coming your way. It is a very frightening experience. About 2 months ago we were getting into bed and I wanted something. I tried and tried to get upright and couldn't. I went into panic mode and motioned for Larry to help. He got me upright and we went upstairs to sit in a chair. I was so freaked out that I have not gone to bed since. I know have a recliner lift chair and feel more at ease. I live in the chair. Hope you find a solution. I feel your anxiety. Bill

 

[Jhill]

Same with my husband. Went to bed one night and hated not being able to get the covers off of himself.
I helped move him to his lift recliner & he never moved back to a bed.
ALS is just a horrific disease.

Hugs,
Joan

 

[Lkaibel]

Deb, Wendy, Duke, Joan I feel for all of you. What you describe Deb is feeling so trapped must have been terrifying, I can't imagine.

I say I feel for all of you because I am looking at your diagnosis dates. Joan's husband is gone, and Wendy, Duke, and Deb were all Dx'd not far at all from my Brian but you are having more challenges for sure. I need to always remember gratitude.

I add hugs, all around.

 

[Jrzygrl]

My husband has a similar situation. He cannot turn over in bed and at times feels trapped by the covers. If I pull his knees up, he can scoot his butt to move around some. I have installed a fold-down bed rail that he can grip it and help roll over. He cannot get up to a sitting position without help either.

ALS SUCKS!

 

[faithandlove]

Thanks everyone for your hugs and kind words. I went to an ALS meeting and told them what happened, and I could hardly get the words out because I burst into tears. My husband was in shock because I rarely cry. I then talked to the hospice social worker about my husband's surgery, and I told her I would be home alone from 2 pm to 5:30 pm. She said I cannot be alone, and I now have hospice coming during that time.

Wendy-we do seem to have the same progression. I hope yours slows down.

On a plus note, I sure have met some very kind, compassionate people on this forum, at the ALS meetings, and at the ALS clinic. It's such an oxymoron to feel so lucky to have the many blessings I have, but feel so unlucky to have this monster.

Hugs to all you PALS and CALS,
Deb

 

[affected]

Deb I want to hug that social worker who simply stated that you cannot be alone and organised things for you. You are right about the oxymoron, or maybe paradox - how lucky are we to be so incredibly unlucky as to meet here :lol:

 

[KimT]

Deb,
I don't even know what to say. Nothing seems sufficient. You are an incredibly strong woman for posting your experience.

 

[azgirl]

Deb,
The panic attacks and that trapped and helpless feeling are terrifying. I use deep breathing play mind games to distract myself. Also mmj helps me head them off at nighttime.

Just one more sucky thing we all share. Sorry