The diagnosis of primary progressive multiple sclerosis is never a good news, as the MS sufferer learns that things will never be the same, and there will be a sometimes rapid, sometimes slow progression towards a degrading health. There is nothing happy about this type of MS, and there will be no white light shed upon this article. Just facts, truths and the uncertainty primary progressive MS sufferers need to face each and every day of their lives, from the moment they were diagnosed, until death or the finding of a cure for PPMS.
So, what is someone with PPMS to expect? The answer is not simple, as there are no two individuals with primary progressive multiple sclerosis to have the same symptoms and the same evolution of the disease. There is this uncertainty regarding the progression of the disease that makes planning for the future almost impossible. Raising children, changing jobs, planning for college, buying a home, these are things that most people have troubles planning because they don’t know what the future will bring. For someone to PPMS, this is twice as hard, because they don’t know how the disease will affect them: loosing eye sight, unable to walk, lung weakness that confines them to bed, et cetera.
Besides all these uncertainties, people with PPMS feel like they are left out in the cold, because almost all the advances in MS are made for other typologies, while, research, so far, had no success in this type of MS. The question is how can people with PPMS plan for the future surrounded by all these uncertainties?
It’s needless to say that the thought of loosing ability to work, to walk, to care for one’s family can be overwhelming. Panic and fear are the standard responses. So, how can one deal with this?
A very useful approach to the panic and fear is to confront with it, and smash it down to its roots, only to be able to convert it into practical action. Breaking fear into parts and addressing each part separately can help one to plan and cover all the possible outcomes, which make it less scary in the long run.
Let’s say that for most people the scariest thought is being in a nursing home as a result of their MS, or not being able to work and to provide for themselves and their family. The best thing to do is to explore that fear, and see what outcomes are the most frightening.
Once this is done, one should start thinking what they can do today, in order to make their feared outcome less frightening; or at least know what to expect and prepare for the unavoidable. This can be seen by some people like bad luck, but it actually brings an ounce of control in the PPMS sufferer’s life.
Of course, dealing with the uncertainty of primary progressive multiple sclerosis is better done with the help of one’s family and loved ones, as their support can prove to be the best thing that can happen in one’s life.