by Doug Brand/St. Petersburg, FL
There is an added benefit many of us enjoy as "associate members" of this community…i.e. caregivers, helpers, errands runners, yes dears and no dears…or whatever you want to call us.
We are given the means to grow spiritually by merely observing the courage and bravery exhibited by our PLS partners. Seeing them utilize their will and instincts to find alternative ways to complete even the simplest of tasks…. once in a while with tears, but usually with a smile that says, "by God, I did it!"
They find the strength to prevail even as strength itself is waning. A lesson in accomplishment that should shame those of us with the mobility and stamina to do as we wish.
We’re taught a painful lesson in patience and restraint – watching our loved ones struggle. We stand at the edge of their world knowing our assistance will only hasten their dwindling independence. We are filled with pride as they venture out into society knowing full well they are different.
They have galvanized themselves from the stares and insensitive questions from strangers. Many of them talk funny … many walk funny … many rely on contraptions with wheels and hand brakes to make their way through the crowds.
We walk behind them in silence as they zero in on that "70% OFF" rack. Even though the other racks are too close together, with grit and determination they bulldoze through the obstacle course to reach their final destination. They will not be denied! How many of us would simply say "to hell with it" and move on?
We’ve also learned to modify our lives to meet the needs of the ever changing present. What seemed so important to us in the past has been replaced with an entirely new set of priorities. From that comes acceptance and growth. It enables us to focus on the what’s really important and gain a greater appreciation of how precious life and relationships are.
We’ve learned a sense of calm and control when confronted with what seems insurmountable odds. Are they really mountains … or merely speed bumps?
Through sharing with others, we’ve gained the courage and wisdom to negotiate a path around, through, over or under obstacles that get in our way. Would we be so wise and enriched if this PLS thing hadn’t entered our lives through the lives of our loved ones?
I think not. And therein lies the paradox … out of adversity comes strength … out of fear of the unknown comes light and focus … out of hopelessness comes resourcefulness.
This is a very unique club. No secret handshakes, no silly initiations, no club rules. Just an international group of mostly faceless friends sharing unconditional love through their experience, strength and hope. Have a
great day and be good to yourselves.
More from Doug: On being a Caregiver
…In a nutshell, it’s very difficult and often heartbreaking being a spouse of a PLSer and seeing how your partner struggles. Nothing in life can prepare a person to be a "caregiver". It’s totally foreign. With the sincerest intent to help, common sense collides with emotion, thus blurring the correct course of action. I experienced this in the very beginning of Flora’s decline.
I jumped in with both feet, determined to make life safe, secure and easy for her while she worked through the mental and emotional stain of acceptance. And, I must admit, it was no easy job. Laundry, meal planning and prep, house cleaning and a myriad of other activities she lovingly performed so well, were now my responsibility…or so I thought. It wasn’t until she exclaimed "enough is enough", that I realized I was doing more harm than good. PLS was eroding her self esteem and independence fast enough, without me hurrying it along. Flora made it very clear that if and when she needed help, she’d ask for it. My mission in the process was relegated to remaining on the periphery of her world, thus allowing her to take on tasks and challenges at her own pace and in her own time. This was very difficult to accept in the beginning, but it delivered a very needed wake up call.
Over the years, I have marveled at her accomplishments and determination not to give up ground. Be assured, anything Flora has to give up comes with claw marks! I have come to understand that spouses need to come to terms with the givens of the disease: (A) Your partner has it (B) It’s not going to go away (C) At present there is not cure (D) It most likely will get worse with time.
As harsh as it may seem, those are the cold hard facts. We also need to admit to our limitations. We can’t relieve the pain, straighten the spastic gait, clarify the speech, steady the tremors or have a positive effect on any of the many other conditions of PLS. So, where does that leave us?
We need to be there for them and "on call" when needed. We need to exhibit restraint and understanding when tensions cause irrational behavior or cutting words. We need to show strength when we see them struggle while our instincts tell us to take control. We need to see that no one or set of circumstances compromise their dignity and rights. We need to be there.
Cultivating an atmosphere that breeds self pity is the last thing PLS patients need to surround themselves with. That can only lead to depression, despair and surrender. These are brave, courageous people who God has chosen to challenge. That fact alone makes them very special in my eyes. We have been singled out as well to help them with those challenges by moving forward one day at a time. Panic and impulsive thinking do more harm than good.
Saturday, September 8th, 2012
DON'T MISS OUT! Come hear the very latest about what is known about and what hope we have for a cure for HSP and PLS. Also, you will love meeting and learning from over one hundred other people with these conditions. Make friends, learn from others about how to cope, the best tools and just have a great time.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
93 cents of every dollar you donate goes into our mission of research and service. 4 cents goes to fundraising and 3 cents goes to data management and general expenses. Our all volunteer Scientific Advisory Board makes sure that we are supporting only the very best research projects on the planet. The Spastic Paraplegia Foundation is an all volunteer run foundation. Our highly skilled staff, Scientific Advisory Board, Medical Advisors, CPA, Attorney, President, Board Members - all of us are working hard every day probono because we strongly believe in this cause. We know a cure is right within reach and we ask you to please join us in reaching by making a tax deductible donation.