This is how it started, from my viewpoint. Starting about 9 months after experiencing his first symptoms.
June 14 – What’s going on with Richard? Wanting to get a diagnosis so we’re not living with this unknown, but at the same time not wanting to hear anything devastating. The need to be strong and supportive for Richard and our sons, all the while dealing with so much uncertainty is difficult. Although I can tell Richard is not improving, he also does not seem to be getting any worse.
June 15 – Richard’s doctor called with results from the spinal tap and blood work testing for Multiple Sclerosis. The results came back negative, so the mystery continues. Richard is having trouble walking. I’m so sorry that this is happening to Richard. How cruel for this to happen to him, to us, to our family.
June 19 – I’ve been having trouble sleeping lately—both falling asleep and waking in the night. We went to Richard’s doctor today. By process of elimination and his symptoms, the doctor thinks it’s Primary Lateral Sclerosis. He gave him some medication used for Parkinson’s disease to try. If it helps him significantly it may turn out to be some atypical PD because he is so young, just 36. He gave us a medical journal study about PLS. The doctor said it would be better if it were PD because at least there are drugs to relieve the symptoms. There may be no real help for PLS. This still seems unreal to me.
June 21 – Richard is out of town. I did some Internet research about Primary Lateral Sclerosis. The prognosis is very depressing; I wish I hadn’t read about it. I don’t want to dwell on what I’ve read. I don’t want to be depressed. I don’t want to think about being alone.
June 27 -Today we saw the Chief of Neurology at UCLA. At the end of the exam he said he did not think it’s MS and most likely not PD. He narrowed it down to 1) ALS 2) PLS#0 Cortical Basal Ganglionic Degeneration. He wanted Richard to have another test, an EMG. The test was negative, no ALS. We are very relieved.
July 27 – Yesterday Richard got a diagnosis at long last. A PET scan showed evidence of Parkinson’s disease. The doctor told Richard over the phone while he was at work. He called me crying. He came home, we cried. I’m filled with pain and fear. When I’m not feeling sad, I feel nothing. I looked on the Internet, I wanted to find a book to read, but there were so many recommended, I was overwhelmed. I’m afraid of what else we may learn. I know we will really need each other to make it through this, now and forever.
July 28 – We finally saw a Neurologist who was a Movement Disorder Specialist. He’s our second opinion. Here’s what he said, “I think there is little doubt that he has young onset Parkinson’s disease and should be treated for this disorder. Young onset patients are at very high risk of getting motor fluctuations and at low risk for cognitive problems.”
My birthday was 3 days later, I turned 37. Our journey begins as I try to learn as much as I can. Richard does not want to read anything. He wants me to read and learn about the disease. Then I can just tell him what I think he needs to know.
Over 15 years ago.