What a day yesterday. Husband had PT, then we were off to see Dr A. Now, Dr A is the top Neurologist in the state. It takes minimum 6 months to see him, if you're lucky. I am so glad we have him. Especially after yesterday.
When we got into an exam room, Dr came in and started to examine husband. He told me his legs are beginning to atrophy, that PT is fine, but, it won't stop the legs from becoming useless. He said keep taking him there, if not for anything else but it gets husband out of the house. He examined his arms and said he sees some signs of the arms being affected. Nothing like his legs, but, it's starting.
He then gave him the usual tests. Like drawing a clock, (he couldn't), subtracting 7 from 100, (he couldn't), did not know what day it was, got the month wrong and so on. Then, he gave him a written test, and asked me to step out with him. We went to his office where I told him he was still insisting on driving. Dr was flabbergasted. He said he would send in a request to Motor Vehicles to have his license revoked. (Thank you) We also talked about the prognosis, which of course I already know, but, I wanted to see what stage we are in. He said from a scale from 1 to 7, with 1 being slight, to 7 being end of life, he is at 5. OK, be careful what you ask for.
Once we got back to the room, Dr A told him he is not to drive anymore, at all. He told him that, legally he has to report to Motor Vehicles. Make a long story short, husband was furious.
We then went on to the subject of Genetic Testing. We started this almost 2 years ago, but, our insurance denied it because of the cost, ($1,800 and up). Just as we were talking about putting in a request, his nurse came in and said she had gotten approval through Medicare. Talk about an answered prayer.
He had his blood drawn and we now begin the wait. 6-8 weeks. This Genetic Testing is important for a few reasons. What kind of defective gene has been passed on to him? Because this type of disease takes them so young, they need to identify it. Because I do not want him to have an autopsy, the results of the genetic test is the other choice. Lastly, but most important, has he passed this defective gene on to Jack?
I told Jack about it last night. Gave him an option on what he wants to do about it. Do you want to know if you have the same defective gene? His answer:
"Mom, if I found out I had it, I would end my life. I want to live a happy life, if I get it, I get it. But, I don't want to know ahead of time. End of discussion".
His choice, his life.
Husband was quite upset when we left. Later on, at home, I spoke with him about driving. He opened up to me, and we made a deal. He would refrain from driving for 1 month. I'll take that. Then, I eased onto the subject of selling the truck. Told him Tyler wants to buy it, and that if he did,I would let him have some of the cash to put in his pocket. Wouldn't that be nice for you to carry cash again?, I asked. He seemed to like that idea. The rest of the money would be used to move on. He seemed receptive. It was a great conversation. I told him how much I worry when he drives. He seemed sad that he worries me. It just ended well.
Dr A upped his meds at night, upped his meds for during the day and added another med during the day for the spasticity in the legs. He slept good last night with the increased dosage.
I know we are on the right road. From his not driving anymore, selling the truck, genetic testing finally underway (2 years in the making) to a good nights sleep, I feel more relaxed than I have in a very. long. time.
God is Good.