Rough week

Some weeks are filled with discovery, others just day to day stuff and then there are weeks that have significant milestones. MSA progresses much faster than Parkinson's Disease, however both have stretches of status quo and periods of dramatic change. Neither progresses in a manner that you can say- Oh! we have moved into the next phase. Every patient has a mixed grab bag of symptoms.

 I go regularly once a month to a care giver's support group and between the combined knowledge of the group I learn about a lot of things that we could be facing. I could let this freak me out, but because it is a group I have learned that everybody has a different reality and that he probably won't get all these things. What helps is that when something does happen I can see it and know why it happened. This brings me to the first thing this week.

#1 - Bob fell.  Let me allay all fears - He is fine and didn't have to go to the ER. It was the classic middle of the night, had to go the the bathroom fall. Because he hit his head (and has a small gash) I called  911. I have decided that I am not messing around with his care If he had fallen on the carpet and didn't appear to have any problems I'd have hefted him up checked him out and let it go. But 3am, head and blood - I call the paramedics. I always look for the benefits in a situation and even in this I can see it. The Fire station is across the street from us. I have previously gone over and made a report about Bob so they would have a clue. The minute I called they knew who and where we were (and not just because it was on their screen).

The Benefits? - They got to meet Bob and asses him personally. They got a look at the apartment and realized the challenges they would be facing if he had needed transport. Besides the non accessibility of the apartment you don't want to bring the Firetruck into certain driveways between buildings, so they learned how best to arrange the vehicles. Believe me they were actively inspecting options because... They knew they would be back. And that was the hard thing. They will be back. Fortunately this was a relatively minor incident and so we were able to make the most use out of it. Oh and Bob was really impressed with the treatment he got and less likely to be reluctant to ask for help when we need it.

The next day Bob and I talked about it. Why did he fall?  He told me that as soon as he entered the doorway his leg stuck or "Froze". Because of the support group I knew that often doorways present a challenge to PD'rs. For some reason they often freeze in doorways and because he was hurrying he still had some momentum and when his leg froze he could not recover and he went down. So we talked about ways to help cope with these kind of situations.

So tough thing #1 coping with falls, having to call for help and realizing - this is just the beginning.

#2 - My parents are getting older and it is never a good thing when my sister calls on a Sunday afternoon. My mom is currently staying overnight at the hospital for tests and observation. She's fine for now but she was having significant chest pains and they aren't playing around. Prognosis? - Likely a change in meds possibly a procedure. Appears to be an early thing that detection will prevent a more serious event.

I must say that my sister is an awesome guardian of my folks and I so appreciate that I can count on her to manage their situations while I focus on Bob and I know that when it's imperative she will let me know if and when I need to come to Portland. I could feel guilty about being so far away - but I need to look at it as - we are a team and she is doing her part and I am doing mine and when we need to consolidate - we will. I thank God for siblings who are so competent and easy to work with. Well behaved, well loved and loving God what an awesome family to belong to!

#3 - this one is subtle and because he doesn't read this blog I can express my concern here.Memory is a very complicated and multi layered thing. He has never had a great memory for stuff like names, and short term things ect. He has a photogenic memory for his profession. In his mind he can project on the wall any schematic he has ever seen. That's one of the reason's why he is so good at fixing things. This is why I nurture his computer addiction and why we benefit as much as the people who bring their computers to him. It's his therapy, it keeps his brain working and uses areas of his memory that are firmly embedded in his brain. By the time someone is diagnosed with Parkinson's and then later MSA there is a neurological loss that can be up to 80 percent.



So - it's been a tough week but it's also been filled with the Love of my community and God's people. I had some wonderful times of recharging and respite with my Ladies bible study. I received some recognition for a huge creative project I did this summer that was unexpected and flattering to be so recognized. And several people have told me that they appreciate me and my testimony as a caregiver for my husband. It always amazes me how other's perceive me and it's nice to know it's not as bad as I would think :) Sometimes their perspective is something I hadn't realized and it can be enlightening to see a different perspective of yourself.

God provides the nourishment that I need as I travel this earth and I will continue to hold on to his hand, put my roots deep into his everlasting water and live the best life that I can and hope that it brings praise and glory to him.