Posted - September 2011 in Living with HSP - Management & Treatment News
Dr. Malin Dollinger, HSPer, author and Board Member of the SP Foundation (USA), recently wrote the following in response to someone struggling with the fact they had HSP:
I, and the rest of us, understand the bewilderment, uncertainty, anger, and “why did this happen to me” that we all have experienced. There is no easy answer. We instantly jump into the rules we learned as a child: if something is wrong with us, it must be our fault. That may work for a poor grade in school, or a traffic ticket, or a broken promise, but if a cosmic ray hits one of our genes, or our parent’s genes, that’s not something we could have predicted or prevented. It’s not your fault. It’s not anybody’s fault. We do have the automatic response, “Why me?” There is no answer to that question. There is only, and especially, the need to live our lives as best and as full as we are able, and focus on what we are able to do, and not what we are not able to do. And the “community” has a lot of experience, and a lot of answers to make this happen. You can make lemonade out of lemons.
I have had HSP for some 20 years, at least I had a name for it for that amount of time. I had increased reflexes as a small child; they thought I had polio, and I was given piano lessons to help my hands [I am now an accomplished musician]. I gave rides to my kids on my knee, not knowing that ankle clonus was part of later-to-be-diagnosed HSP. I was never an athlete, but had no problem walking until I was about 55 [I am 75 now], and after seeing THREE neurologists I finally had the correct diagnosis. I had the gene study, and found SPG4, the most common form of HSP. In a few seconds I realized that my daughter did not have cerebral palsy, as was thought from the age of two! She was tested and has the same SPG4 gene. My other biologic child, and my brother do not have HSP, as would be approximately predicted by the nature of this “dominant” gene– half the offspring would be expected to have HSP and half would be normal.
My daughter started having symptoms at a younger age that I did, and has bladder symptoms, that I don’t have. So there is an example of the well-known differences in how HSP presents itself in the same family … perhaps in yours as well.
My life is now focused on dealing with HSP myself and in helping others with HSP [and a related disorder PLS] do the same. It’s not what I ever knew about, or thought about, or planned. For many years I had this fantasy belief that this was all a dream, and that I would wake up one morning again able to walk, square dance, and clog. I no longer have that dream, but I get physical therapy, have a variety of aids to function, canes, walkers, scooters, 85 grab bars all over my home, ramps and wide doorways where I need them, and a whole new set of rules on how to still live my life productively despite the “Horrific Set of Problems” (HSP).
I realized that I needed to convert my activities to things I could do sitting down, rather than by needing to walk. I gave up medical practice in a large group, and went into solo practice giving cancer second opinions. I would be able to sit in the office all day and just talk to people. I modified my home so I could reach everything, and found new interests that did not require me to stand up, walk, run, and be instantly mobile.
There is what I would call the time of “shock” when the diagnosis is first made. This may indeed last for a few years, and how that works and how it is resolved depends significantly on your family and your people, and how they relate to you and you to them. You need to discover who is “on your side” and who is not. Cultivate the former and simply smile sweetly at the latter. You especially need a friend who simply accepts you for what/who you are, and ignores what you are not. Those who don’t understand what you are going through, or who cannot accept you for who/what you are also have a disability. Theirs is from the neck up. Your disability is from the waist down. It does get a bit tricky, getting help from others. My wife, who has been a rock for me over these years, and has made my life work very successfully despite my HSP, has also learned that I often need to prove I can do things myself, and to resist her automatic urge to do everything for me. In my fantasy world, if she helps me with everything, that proves I have a major disability from HSP. So we have constructed a system where I ask for help if I need it; that leaves me in control of my life, which you will discover, as we all have, that some kind of control, even if limited, is essential to our well-being.
You have likely realized by now how different your life has/will become, both physically AND emotionally, and yet you are still the same person, with the same ability to function and be productive, to love and be loved, and to make the most of what you do have. From all the posts on this website that you have read you know that there is help, a thoughtful response based on experience, and often simply a listening ear. I believe in each of us, you included, and that we can successfully pursue our lives in meaningful ways despite some damn diagnosis we don’t want and didn’t make any plans for. All of us spend considerable time helping each other, because we want to, because we have found some answers, and because we are all worthy people, yourself included.
I wish you success in getting through the pathway of adversity toward self-realization and contentment, as will need to be re-defined. We all wish the same.