Too Much Scary Information

I try not to Google too much, but tonight I was curious about Hubby’s MS progression. He was diagnosed at age 68 and will be 70 in the fall. Here’s the disability chart I found on Healthline:

According to Healthline:

0No disability.
1Minimal symptoms impacting one functional system, but no disability.
1.5Minimal symptoms impacting more than one function system, but no disability.
2Minimal disability symptoms in at least one functional system.
2.5Mild disability symptoms in one functional system or minimal disability in two functional systems.
3Moderate disability symptoms in one functional system, or mild disability in three or four functional systems. No difficulty walking.
3.5Moderate disability in one functional system and more than minimal disability in several others. No difficulty walking.
4Significant disability but able to perform self-care activities and live independently. Able to walk without assistance or rest for at least 500 meters (1,640 feet).
4.5Significant disability and some limits to the ability to perform daily tasks. Still able to work and independently do most activities. Able to walk without assistance or rest for at least 300 meters (984 feet).
5Disability is significant enough that daily activities are impacted. Might need assistance to work or perform self-care. Able to walk with assistance or aid for at least 200 meters (656 feet).
5.5Disability is significant enough that self-care and other daily activities might not be possible. Able to walk without assistance or rest for at least 100 meters (328 feet).
6Need a walking aid but can walk 100 meters (328 feet) without resting.
6.5Needs two walking aids but can walk 20 meters (66 feet) without resting.
7Uses wheelchair exclusively but able to transfer self in and out of the wheelchair. Able to use a wheelchair independently. No longer able to walk more than 5 meters (16 feet) even with aid.
7.5Might need help transferring in and out of the wheelchair. Might require a motorized wheelchair. Unable to walk more than a few steps.
8Needs assistance to use a wheelchair. Still able to use arms and perform some self-care.
8.5Restricted to bed for most of the day. Still has some use of arms for self-care.
9Unable to leave bed. Able to communicate and eat.
9.5Unable to leave bed. Completely dependent and unable to communicate. Cannot eat or swallow independently.
10Death from MS.

According to this chart and my untrained brain, He’s now at an 8. He has his upper body to maneuver, eat (sometimes with assistance), comb his hair and brush his teeth.

Needless to say, this scares the crap out of me. I preach that it’s one day at a time and to breathe, but this is difficult to do. In bed, he feels paralyzed because he can’t roll from side to side or move his legs and feet. It’s a scary thing for us both. He has brain fog if he stays up too late or becomes overheated.

My first husband died suddenly just before his 41st birthday. I met current Hubby in 1976 before I met my first husband. In 2009, we reconnected (still long-distance). MS invaded our lives officially in December 2020. His symptoms began in 2018. I love him more than I can express. This is difficult.

I try to keep his dignity intact as much as is possible. He’s always been Mr. Fix-it, independent and very proud. He is also a very kind soul. If he is in the wrong, he will apologize. He thanks me for helping him. He compliments my cooking. For people who know me, that is HUGE! I used to rock the microwave. Now I actually cook. I suppose I only needed to retire and become a full time caregiver for that to happen.

We are approaching our expiration dates at this point. We’re retired and I am only two years younger. I am scared. I like information because I want to prepare myself mentally. Should he progress further, bed bound will be next. I cannot allow myself to go there. The Ocrevus is supposed to delay or stop progression. In January of this year, he transferred himself to the manual wheelchair and met me in the kitchen and sometimes made his own coffee…January of this year.

Please, Lord. Help me.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s