Tuesday night my phd was to come home a bit earlier than the usual 7pm as I have begun attending a support group for depression. He never showed and I knew something was wrong. I got into the car and began driving in circles to try and find him. Maybe his bike chain came off and he was walking home? But, no....I got a call from the police that he was in the emergency room after flying into the back window of someone's car and shattering the window with his face.

A momentary lapse of concentration and he could have killed himself. But he doesn't see it that way. He is chopping at the bit to get back on his bike (which did not get a scratch unlike his face) to ride back to town and have his coffee. I always thought that the bike riding was a good thing (though inherently dangerous) but keeps him strong and able to get around a bit better than walking.

I really have no power to keep him at home. He goes everyday of the week to town for his coffee and to ride his bike and take a bit of a walk. I have not been able to accompany him like I use to. I am desperately trying to pay the rent. I just can't be everywhere all the time. Man his face looks bad. He must have gotten at least 50 stitches.

I began taking Klonopin last week again and thank god I did as I have not taken an emotional nose dive and am able to pick it up and keep going on. Unlike I was before spiraling out of control.

But I really don't know what to do and have no one to turn too. At least I got him to stay home for a few days to let the cuts heal. But now what?

Can you have the bike "stolen"? have the tires slashed? Have someone take a bat to it? I don't like the sound of this. I know we're supposed to give them all the freedom we can, but what about the poor person he smashed into? It may have caused a chain reaction. There's a whole bunch of reasons I can think of this could have been worse and others hurt. Anyone agree with me? Am I just being mean?

It's not that I don't agree Pat, but my SIL got hit by a car. She was walking. I guess the car got pretty messed up too. She was walking out in the middle of the street because of deep snow. I just don't think you can protect them and everyone else from poor decision making all the time. Not until someone is willing to make the call that they are not competent anymore. Taking the bike may be a temporary solution if that's possible.

Hi Mango, I can totally relate to what you're enduring right now. My Dad rides his bike everyday and although he hasn't plunged into a car, he has returned with several injuries and buckled more than just my bike tyre! We have no idea where he rides to half the time, he doesn't do his helmet strap up, is quite unbalanced on his bike and doesn't come home when he's supposed to. It has been very difficult for Mum (and me) to 'let him go', but what else are we supposed to do? He isn't a child that you can confiscate his bike and forbid him to go out, and yes mrspatwolf, he has had his bike stolen (genuinely), but went out to buy another straight away. This bike riding habit is good compared to him going out all day on his motorbike mind! That was really scary. I think he must have lost control and nearly crashed it because he suddenly didn't go out on it anymore and started to complain that it is too heavy for him (thank goodness!) Lately his knee has caused him some problems and he is riding his bike far less this past week or so, so hopefully this is a sign of realisation and less bike outings. I just hope he doesn't substitute it for something more dangerous. Fortunately he decided to sell his motorbike!

Dad has mentioned getting one of those mobile scooters (trendy wheelchair buggy) down the track so then he can still have some independence, but not rely on his balance for safety. My Dad bought my grandmother one many years ago so really tested it thoroughly for safety and manouvability. She was a hoon on it (and did not have HD!) - far worse than Dad on his bike! That is probably why he has accepted the idea of one in the future. I think in reality it will take him another year or so, and another scare or two, to accept needing one in place of his bike, but the idea is firmly in his mind at least.

So Mango, I hope this latest incident will have given him a fright and although he is keen to get back on his bike now, it may be different in reality. The choice to give up his bike really does need to be his, and if he can realise the danger he is putting himself and others in, he might accept it more freely - not really a strength for HD sufferers! If not this scare, it might be his failing balance to convince him to give up the bike, just hope he comes to this point of acceptance before another major incident! Having an alternative such as the scooter idea might help persuade him. You don't have to buy one (quite expensive!) you can hire them from various places.

Keep up the anti-depressants as they are clearly what you need right now, but get some more support - talk to your counsellor, a friend or someone else you feel comfortable talk to. This forum is great, but you need someone to lean on (literally) when times are tough and laugh with too. Our HD association got mum matched with a 'HD mentor' that has helped her massively. I wish you all the best in this difficult situation but you are definately not alone!

Okay, so I realize that my post my just make thing worse on this topic but the part about the coffee made me think maybe I'm supposed to tell this story, so here it is.

The reason that I found this forum was I was having a hard time handling the death of my brother a year and a half ago.

My brother had been in good physical condidtion all his life. When his hd became apparent he began to ride his bike everywhere. All the time. It really seemed to make him happy. He did this for a few years before having a few accidents. Some with him and parked vehicles, some with the ground, and finally a few with moving vehicles. At this point the bike was damaged and as far as I know, was not replaced.

At this point my brother began walking. And I don't mean "taking a walk", I mean obsessively walking. Any time that you would ask him where he was going he said he was going to get his coffee. I got a call about a year before his death, someone had hit and run my brother from behind very early one morning while he was going to get his coffee. It was a very bad accident that many people were surprised that he had survived at all.

He recovered from this incident but it gave him a very strange "crab-like" gait on top of having a strange gait from hd. But what it did not do is keep him from walking. My father was really stressed about what to do because he felt it was only a matter of time before something else happened.

My dad spoke with the vetern's administration and had him transferred to a VA hospital that had a huge campus so that my brother could walk on campus-away from cars.

Last January my dad got a phone call, my brother had decided to go off campus one night in the middle of one of the biggest storms the Northwest had seen in years. He was crossing the road to the espresso stand when he was struck and killed.

It was strange and sudden, as I had been fretting my brother's long decline with hd, to have him so instantly gone. He was not my only sibling with hd, but he was the youngest, so to have him gone is indescribable.

I don't know if it helps, but the one thing I want to say about my brother is that walking seemed to make him happy. He was happy down to the last day. Even with hd. He liked to walk- nothing could keep him from it- and it made him feel better. For our family, it was worth the risk.

So I guess it really will be your personal decision. And a very hard one. God bless.

Mango, I see the dilemma for you. I think a caregiver would constantly have to be the voice of reason to a phd that may need some guidance in decision making. We had a recent severe windstorm that took shingles off the roof and knocked down trees. My phd who is symptomic but still working was told "NO, you can no longer go on the roof to make repairs and you can no longer be allowed to run the chainsaw to cut up trees". He didn't even argue, where before he would have. ( think due to the DOCTOR telling him he is not the same and the Risperadol helping his emotions remain subdued). He was however a hugh help with the cleanup by dragging tree limbs off and stacking wood, my grown son and I could not have done it without him. I do not have HD but my mother has always voiced her worries about me riding horses,(she's a mother and will worry) But I tell her it gives me such joy and I can't just avoid the things I love because they may inherently be risky. My phd still rides horses as it helps his balance training and he just really enjoys the rides. Yes, he has a higher risk of falling off the horse than I do, but it's a level of risk he & I are willing to take, but falling off a roof is not.
Why, not the risk of falling off the roof? Why of course, so he can still enjoy the risk of falling off a horse.

TracieT, what a poignant story about your brother. I can appreciate your outlook on knowing that he enjoyed what he was doing each day right up until he died.

My favorite quote and I hope to help my phd live this way as long as possible:

"The purpose to life is not to arrive at the grave safely & securely in a well preserved body, but rather to skid in sideways, chocolate in one hand, wine in the other, body thoroughly used up, totally worn out & screaming, WHEW HEW! WHAT A RIDE!!"

Mango, may you find comfort & wisdom for your difficult decision.
LizzieAnn

Tracy I am glad for him but unfortunately there is someone out there who killed him. That person probably won't ever be the same. Your family did try to mitigate the dangers. When they are midstage and functional physically there isn't always a lot you can do sometimes. You can argue, plead, reason, employ trickery or offer alternatives. But they really are their own people and do get to do what they choose sometimes even if it's unwise. I think the best you can do is just be persistent and consistent in voicing things and hope it clicks one day and they change a behavior.

A side note. It's odd but in the nursing home all the men use wheelchairs... but none of the women do. Teresa is farther along than all of them and will get in the chair on request for transport but chooses to walk if not requested to do otherwise. I have not seen the men so much as stand up. I can't figure that out. Maybe at some point men are more agreeable to suggestion? Generally I mean. Or maybe due to the size of the men it's just handier to insist and keep insisting they use one until they do. If that's the case persistence may pay off in the end.

Thank you all for your thoughts. It does make me feel better knowing that I am not so far off the mark.

This is his fifth or sixth bike. Everytime someone steals it he will wait for his disablity check and go buy another. Now it will be harder if that happened as we are out of money.

I am doing all I can but there like you all have indicated, just so much a caregiver can do.