MS Progressive Types: Living with Progressive MS

The most irritating symptoms in Progressive MS are fatigue, tremors, assorted pains, and trouble walking. These are the same types of symptoms that bother all MSers. It seems Progressive MS often leads to fears of requiring a wheelchair full-time, or even worse, being in bed full-time. Some people choose not to think about it, and take what happens one day at a time. These fears are not exclusive to Progressive MS because the symptoms occur in all stages. However, the chair and bed scenarios are more prevalent as the Progressive MS advances.

MS steals our abilities, but functions can often be supplemented or replaced by assistive devices and helpful friends, family or professional caregivers. There are various walking aids available to supplement different levels of walking difficulties; all types of software and add-ons to supplement computer skills; devices to ease transfers; minor construction to enhance accessibility. Caregivers can supplement daily tasks, even minor or personal ones.

As MS saps physical strength, emotional strength takes over. Just like all aspects of MS, the level and rate of progression is individual and cannot be predicted for any one person. Where some people require a wheelchair, others maintain their mobility for years. Just as MSers hesitate when finding out if they are transitioning to the next phase of MS, many hesitate to investigate availability of helpful devices. This may be an unconscious attempt to deny the advancing disability.

Annette Funicello, singer, actress, darling of the 50s and 60s, and Progressive MSer said, "For me, the wheelchair symbolizes disability in a way a cane does not." I think I understand her comment. I could still walk but not too well and not too far. As soon as I bought my Amigo scooter, I wished I had done it sooner. I have heard this same sentiment from many others.

Just as the transition from Relapsing/Remitting to Secondary Progressive may be gradual, so is the increase in disability. Many people use a cane in the house and a wheelchair on outings, taking advantage of the ability to walk without risking fatigue. MS often progresses very slowly to medium slow. Doctors can track the actual rate of progression, or we can track it based on our own perceptions. Healthy living and medication sometimes reduces the rate of progression.

Sometimes the progression is much faster and the disability is more drastic. That seems to be the final fear of many MSers, where the choice is between a wheelchair and a bed. Even from the bed, there can still be high spirit and hope. It is still possible to have love and joy. See Access Denied for an example of accomplishments and struggles, with a positive attitude and the support of a loving partner, two dogs, and a large online community.

Welcome to a glance into the world of Progressive MS. Let me leave you with some final thoughts. Progressive MS means some level of disability is inevitable, but as Denise says, it is only a label. Keep a positive attitude and Beverly reminds us to "Never Give Up, Not Ever!"