I wasn't sure where to post this. Dr. Boeve (and other of Coy's medical team) has repeatedly recommended physical activity and social interaction for Coy, so I guess golfing is part of his treatment plan.

Our regional non-profit rehab services organization, Courage Center, sponsors a golf league for persons needing assistance. The league got rained out last week and this was their first time golfing this season. They deal with physical handicaps, and it is Coy's CHF that qualifies him, rather than dementia. If he had behavior issues they probably couldn't take him.

It was a gorgeous day to be out, turning a little hot by the end of the 9 holes. Coy's ears were sun reddened, and he was so tired he could barely slither out of the cart. When his clubs were in the trunk and he was settled into the front seat I asked him if he wanted German food or wanted to go right home and rest. I was surprised that he wanted to go to the nearby German restaurant that we only get to when we are near the golf course (too far from our house to be a destination eatery). He was a little disappointed when his beer came and he saw I had ordered the short glass, but he grinned and thanked me when it was clear he couldn't have drunk anymore. We took food home. He was just too tired to eat, but he enjoyed the resautrant visit anyway.

He said he was pretty "wobbly in the knees" today but that he didn't fall down and that he played better than he expected. He told me he hopes he gets the same volunteer he had today all summer -- a somewhat older gentleman. He probably will. He drank all the water he brought with him -- I think the volunteers see to things like that.

As I pulled into our driveway, I joked with him that if he couldn't make it all the way to the bedroom I'd bring a pillow to him wherever he dropped. He did make it to the bedroom and slept all afternoon. In spite of that he went to bed at the usual time tonight. He asked if there was anything he had to get up for and was glad to hear that there wasn't. I'd be surprised if he's up before noon.

This kind of event takes a lot out of him -- and puts a lot back in! He is very proud that he is still bowling and golfing, and these give him some motivation to exercise between events, and something to look forward to. It also puts him in contact with other adults besides me and medical professionals.

This is one of the more pleasant parts of his treatment plan!

Glad Coy had a good outing. Just a year ago I was taking Derek to a local driving range where he was still able to hit some short and medium iron shots [although he sometimes tried to hit in the wrong direction--toward the utility shed--before I 'redirected' him]. He is no longer able to stand unaided. I turned his TV to the US Open in his room today at the SNF but he wasn't really interested.

Jeanne, So glad to hear Coy can still participate in things he enjoys, it's so important. Like Derek, Frank doesn't have any interest in anything, even Nascar, I put it on and he's up and wandering with in a few minutes. He still gets around, moving furniture, rearranging everything and turning the faucets on and walking away. What I'd give to have a conversation with him, ENJOY these times with Coy, I hope they last for years to come.

Gerry

Pat, I remember you telling that about Derek. Are you glad you provided that for him while he could do it? None of us knows how long any particular stage will last. I see Coy getting into a golf cart and I wonder if he will be able to walk next summer. I think this disease sure demands that we live in the moment, doesn't it?

Gerry, I remember Coy's first year when he had a very short attention span. Finding things for him to watch was a struggle. Sports, yes, but only for very brief periods. The best thing was a set of CDs with episodes of the TV show Northern Exposure, all of which Coy had seen and enjoyed when originally broadcast. Without commercials there was enough continuity and each episode was short enough that most of the time he could sit through and enjoy a whole episode. It didn't bother him at all to see the same one many times. (I think that interuptions with commercials or shows with flashbacks and other disruptions to the plot flow or even sports with instand replays were just too confusing for him at that time. Videos were better.) Grandchildren contributed some of their favorite videos and those were good for Coy, too. Now, amazingly, he can once again follow fairly complicated plots, even when they are interupted by commercials.

I know that not very many of our current members have LOs in the early stage that Coy is in now. But people like Craig and Tonya and Pat S remind us that some people get a diagnosis and discover these forums early enough that sharing early-stage experiences can be meaningful. I intend to share Coy's experiences for as long as they last.

Thank you for your support.

Jeanne, I guess I'm glad I took him to the driving range, although it did not make him happy. It made him more aware of his deficits. I was amazed that he hit the ball at all but he was disappointed that he couldn't hit it like he used to. We've tried many different activities and he is simply not interested in anything any more. I participate in 'balloon ball' two mornings a week at the SNF where about twenty residents sit around a big table and bat a couple of balloons around and he is able to do that pretty well but he is unconscious of the others and will just hit it as hard as he can without regard for his fellow players. He is essentially disengaged from his environment and lives in his delusions.

I recently got him some 'paint by numbers' but he didn't even try it.

please share the positives….

share the early stage stuff…

I might be the earliest stage represented or close to it….

it is kinda depressing to mostly read about where we all know this going…

I have been hesitant to say just how much I have been doing….but that has to be helpful to others…it is helpful for me to read about Coy's longevity in getting around….

I went to a National Park yesterday and got my lifetime Access Pass…and I plan on wearing it out…(I wasn't able to get out of bed till 6PM today)….the only problem with yesterday…was no one to share it with…I saw a bear and eagle though…so I guess I shared the experience with them...

I bought me a new digital camera that takes panoramas and videos…and is all automatic if I want it to be…

I am living alone…probably not for long….it is helpful to read about what is possible at all stages...

Craig, I think I would do just what you are doing. Maybe you should start a blog.

BJ,
I am glad you are getting out and doing things for yourself, it shows you still want to be doing things you enjoy, Good for you!!

I truly feel that Coy's attitude is 1) amazing and 2) a contributing factor to how well he is doing.

He never frets that he can't bowl as well as he once did, or that he can no longer lift a 16 pound ball. He is not embarassed to use a very light ball and he is happy when he does better than the previous week. He is not bitter that he is not allowed to drive the golf cart and if he has to sit out a hole or two and just let his volunteer play it, that dosen't stop him from trying the next hole when he is rested.

I don't think that attitude would have been my natural inclination. I think if I could no longer do something well I'd just give it up. But having seen Coy now I think I may be inspired to celebrate what I can do if I ever face serious impairment. I hope so.

Jeanne,
You certainly are blessed to have a person like your Coy with his attitude and you could be right as to why he is doing so well, it wouldn't surprise me to know how many people would give up on themselves when they are told of such illnesses !

I should think that attitude is, in part, influenced by the location and extent of the brain pathology.

You could very well be right, Pat. We like to think that we are in control of our attitudes, but that may not be entirely true. Certainly disturbances like depression can influence them.

Not only that, but LBD, which often affects the basal ganglia in the midbrain.

Yes Jeanne,
Like Craig, I am so grateful to hear what Coy can do and enjoy, and thank you Craig for sharing your outing to the park! I am still trying to hang in there with the choir, but my fatigue has been so awful lately that it's about all I make it to - but still it makes me happy - and I have some social contact besides the doctors - My hubby's been helping a lot so that helps, but there's so much to be done that's not getting done - but I like Coy's attitude about just letting some things go and not getting overly upset about what we can't do....Thanks all for sharing and especially for sharing the positives! It really does help!
Best wishes,
Tonya