Community Views: What is Life Like With PPMS?
Last updated: August 2021
Primary progressive multiple sclerosis (PPMS) is MS that develops slowly and steadily worsens over time. PPMS does not go through periods of relapse or remission like other forms of MS. Lacking periods of remission impacts the quality of life for those with PPMS.1
We wanted to better understand how PPMS affects community members. We recently asked followers of our Facebook page, “For those living with PPMS, what has your symptom experience been like?”
Living with PPMS
From the many insights shared, it is clear PPMS takes a significant toll on your life.
A plethora of symptoms
There is rarely just 1 symptom that arises with PPMS. There may be 1 that is most burdensome for you, but you live with various symptoms. Numbness and tingling in the extremities, fatigue, mobility, balance, and incontinence were among the many symptoms you shared. Any 1 of these makes life challenging – taken together, the impact on quality of life is drastic.
“First was trouble walking. Then some incontinence. Numbness and tingling in my hands. Trouble sleeping. Dropping things. Last June, I started falling.”
“Extreme tingling, pins and needles, numbness. MS hug. Weakness. Dexterity issues. Balance issues. Falling more often. Fatigue. Brain fog. Trouble talking. Incontinence. Headaches. Itching but never being able to scratch it away. Stiffness. Depression. Difficulty typing. Lack of focus. Sudden emotional sways, despite psych meds.”
Loss of mobility
Over time, several of you lost the ability to move independently. Those with PPMS develop more lesions on the spine than in the brain. Difficulty walking can be an early result of spinal lesions. Several of you shared that disease progression has led to wheelchair use since your body can no longer move without assistance.1
“Walking difficulties, weakness every day, speech problems.”
“I am a full-time wheelchair user. My mobility is gone. My legs are too weak to support me, and the pain that shoots through me if I try is too much.”
“After 35 years of PPMS, I’m in a power chair and only have use of my left arm. Pain 24/7. It’s a living hell.”
Speech and cognitive abilities
Language and memory function is another area many of you mentioned impacting your lives with PPMS. Lesions in the brain cause damage to the areas that control speech and memory. Slurred speech, forgetting words, and gaps in memory can result. Losing the ability to communicate with ease feels extremely frustrating.2
“I have trouble speaking. Slurred speech; trying to form words is impossible at times. My memory is so bad that I have trouble remembering what I did a few hours ago.”
“Most recently memory loss and speech problems.”
“What scares me most is not the pain (and believe me, there is plenty) but my declining mental abilities. I don’t ever want to be a burden to others.”
It is always a privilege to hear your stories. We appreciate your willingness to share with us and each other how PPMS impacts your life. One member described the impact poignantly:
“I feel like I am losing pieces of myself, but it helps to know others are fighting this too.”
We are all in this together.
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