After several years of living with PSP, my father passed from this life very peacefully while in his sleep.
He was diagnosed with PSP about 4 years ago. However, I feel that he had exhibited signs of the disease for many years prior to this. It is heartbreaking that he is gone but I am grateful for many blessings that have come out of this struggle. Foremost, I am grateful that the entire family had years to spend quality time with him. We all knew that the road ahead was going to be long, bumpy and riddled with tears and frustration. What we didn't consider was the opportunity to become a stronger, more closely knit family.
For me, nothing was left unsaid. Too many times, I have heard someone say that they wish they had a little more time to say something. I had that time. Some have wounded relationships that need healed. My relationship, bumpy at times, was completely golden and without animosity. Although I am the oldest child at 51, he was still teaching me how to be a man, a father, a good neighbor.
I feel that I can represent my 3 siblings and say that we all greatly benefited from our time spent with dad during this illness. I can go on for many more sentences about the priceless time that we took advantage of. Now that he is gone, I feel the hurt, the heartache, the emptiness but I know in time these will fade and I will be stronger and better prepared for other struggles that may lay ahead in my life. In closing, I want to say that my oldest daughter will graduate form medical school in 1 week where she will start her residency in a nationally ranked neurology program focusing on PSP, ALS and other muscle movement disorders. I can not help but feel that with what she has witnessed and lived first hand with her grandpa's fight with PSP, she will be a physician who makes a difference. She may not find the cure or develop an effective drug therapy but without a doubt in my mind, she will make a difference in the lives of PSP patients. God has gifted her with a talent, the intellect, the compassion, desire and drive to be a difference. It was incredibly hard for my father to speak the words, but a few weeks ago he was able to tell her how proud he was of her. Those words will be in her heart everyday she works with her patients.
May I say, keep your faith. Do not blame God for this. Use this time to take advantage of all the little things and never feel like you or your family member is a victim. Live life to the fullest measure of your ability.
May God continue to bless you all.