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Topic Fear of Leaving The House Go to previous topic Go to next topic Go to higher level

By alongroad On 2009.12.08 19:37
DH recently told me that he has developed fears of leaving the house, and I'm wondering how "normal" this is for PD patients.

What was particularly striking to me was that DH wasn't seeking help for these fears. He is just fine with them--he just wanted me to understand why he doesn't leave the house much. The conversation was in front of a counselor, whom we have been seeing for some marital issues (partly due to PD and partly not).
DH accepts that this fear of leaving home is just a part of the disease, and doesn't particularly see it as a problem.

Background: DH is 45 and has been diagnosed for about nine years. He is still ambulatory and can still drive a car (so far). In the last year his posture and gait have become markedly worse, and he has also lost a lot of weight. He is very sensitive when strangers in stores offer to carry things for him or help him with his coat etc. He stopped working in our family business a couple of years ago, and now rarely puts in an appearance there. He spends most of his time on his computer at home.

It just made me so sad that he has seems to have given up the fight, and that he's going to spend the next decade or whatever sitting at home, a virtual recluse. And he's ok with that....

So, anyone have any insight? Should I just accept this as the new normal, or is there something I can do about it?

On a more theoretical level, I struggle with trying to understand whether he "should" do more to fight the disease (i.e. get some exercise, eat meals more regularly -- if I'm at work he often doesn't eat all day), go to the specialist his neuro recommended....

On one hand, I feel like if I had a major illness I would feel responsible to my family to do as much as I could to fight it; on the other, who am I to tell him what he "should" be doing? (He's still mentally competent -- I think.)

Any thoughts? -- if I'm not being compassionate enough, feel free to say it.

By LOHENGR1N On 2009.12.08 20:47
alongroad, Just a first thought while reading your post. You shared "Background: DH is 45 and has been diagnosed for about nine years. He is still ambulatory and can still drive a car (so far). In the last year his posture and gait have become markedly worse, and he has also lost a lot of weight. He is very sensitive when strangers in stores offer to carry things for him or help him with his coat etc. He stopped working in our family business a couple of years ago, and now rarely puts in an appearance there. He spends most of his time on his computer at home." Also Is fear of leaving the home "normal"? There is no normal with this disease. Everyone reacts differently. However, if He's sensitive when in stores and people offer to help Him, it may well be He takes this as everyone is staring or watching Him in public which makes the Parkinson's effects worse with that worry and stress. Just try staying out of stores with Him till He feels more comfortable. Try getting Him out in the yard or walks in a park or many people stroll through a cemetery, it's peaceful and quiet. Stores can be a bit*h especially this time of year. Try going to a movie they're dark and you can most times find seats off to the side by yourselves. Just try for a bit easing off crowds. Parkinson's Disease is a disease of constant adjustments. Some can be easy others hard, it's not only adjusting to the med's but adjusting to the changes in mind, psyche, body and movement of the body and everyone handles these adjustments differently. Take care, best of luck and hang in there.

By karolinakitty On 2009.12.08 21:06
It could be he just feels uncomfortable about being out in public and feeling that people are staring at him. Mine had a few of those issues at first but has moved on. While he refuses to use the supermarket "go carts" as i call them, he will push the cart to help in his balance. We go to the store in off hours: between 9am and 3 pm ... Children make him nervous with the screaming and running around the store, so those hours are best i found for him going with me.
Are there any hobbies he likes., woodworking anything like that? Does he have a little "shop" of his own or a room where he can do some things he likes, that might help also. Sitting at the computer too long isn't helping with the movement. Mine has found,even though it hurts like hell, the more he moves the better he CAN move. Walks even just around his own property or around the neighborhood would do well too. I don't think it's anything but his own confidence in himself. Maybe he just feels, like he can't do it.
Unsympathetic, no we have a saying around here called "tough love" .. you all have got to get him moving and doing even you think it hurts his feelings i don't think you should walk on eggshells. As my PDr says...let me keep my dignity but let me know what I need to do or what i've done wrong. Dignity is very important, help him keep that but also push him to get out and do something..... anything..
If he likes the computer, there are many chat lines for PD patients and there he can find out he's not alone... Mine belongs to several, and there are those that come on the first time and actually feel relieved that they have someone like them to talk to about their daily isuues, plus mines quite the encourager on them and he's not the only one. If someone comes on depressed they usually don't leave that way. It's a good support for those who are shy or not able to get out to support groups. It may help him.

By Emma On 2009.12.09 05:53
My husband doesn't like to go out anymore either, it's not fear for him though, it's just too hard now. It's hard to get in and out of the car and it's hard to walk even a short distance. Like your husband he also is uncomfortable with people noticing his diasability. Earlier in his disease I encouraged him to do as much as he could. I don't do that anymore since there is so little that he can do. I think it just frustrates him to try. His fine motor skills and visual/spatial skills are shot so he can't do hobby type things. He can barely read or write anymore and he can only walk about 20 feet even with his walker. We do go for rides once in a while and I encourage friends and family to come here to visit rather than us going out. Maybe your husband is having more difficulty than he's letting on to you and that's why he wants to stay home. Just a thought. I'm always torn by this. I'm a big advocate of tough love, but on the other hand I think it's not fair to try to make him do things that are painful, unpleasant or difficult for him. As my husband gets closer to the end stage of this disease I'm not sure that I shouldn't let him let go when he just can't do it anymore. It's tough.

By packerman On 2009.12.09 11:50
i'll echo others about the PD Support chat rooms. mine is on several too. he feels like he makes contributions to others in the same boat...and that helps with his self-esteem.

one thought: could he be depressed? might he need additional meds? there's lots of research to support the PD/depression connection.

as for exercise, what about a stationary bike? mine's got one that he "rides" a couple of times a day for 10-15 minutes. that's something that doesn't require walking & balance.

good luck!

By Mary On 2009.12.11 11:47
My father also did not like leaving the house as the disease progressed. He said he felt like people were looking at him, he felt he walked and talked funny, he also was afraid he'd fall and felt just safe and secure at home. I continued to offer him to go places with me - sometimes he would but as he entered the end stages, he would not. It was extremely difficult for him physically to get around and so he chose to stay home. As long as he was able, my Dad used his exercise bike at home so he would keep his muscles somewhat active. So, my advice, is continue to make the offer to get out of the house but do not insist. Hugs and blessings, Mary

By LOHENGR1N On 2009.12.11 15:25
"Tough Love" was brought up and while the term is appropriate for taking keys away from unsafe drivers and trying to ban unsafe behavior, it is by no way condoning "pushing or goading or urging someone" to do things that either are draining or so uncomfortable as to make the symptoms of Parkinson's worse in a person. It reminds me of a term not much heard these days but brought up in earlier days when Parkinson's Disease was less understood. "Malingering" or being able to act or do but not wanting to or playing sick. This was used commonly with Parkinson's especially when the benefit of medicine produces such a change in the person from almost bedridden to up and active. The patient was accused of malingering because the change was so abrupt observers swore it was just because they didn't want to do something. It is important to remind ourselves that in the beginning We could do most if not all of the things pre diagnosis. As time goes on and this disease progresses We simply can't no matter how hard we want to. Our communication breaks down, we lack the words to convey how come. We try but it is at times hard for Us to explain. Sometimes We don't understand ourselves how come. Our caregivers don't understand, those new to diagnosis can't understand and may puzzle over why they don't or can't when We can?

Sadly as it now stands those new to Parkinson's will in time understand. It has been described as moving around in a cement suit, trying to walk in mud or tying weights to arms and legs and then doing something. At these times it is very tiring and exhausting to do daily tasks and also could result in injury. Just like having me flap my arms hard trying to fly it isn't going to work nor am I going to be able to do a task if I'm dystonic, frozen or tremoring. Forcing or insisting one go out in public will only deepen the dread or anguish one feels, heighten the effects of the disease and cause resentment in the forcing of such. It's a fine line We walk and the balance between tough love and recognizing fear, phobias and inability from time to time to do seemingly simple actions is blurred. Be good to each other. Take care, best of luck and hang in there.

By hubb On 2009.12.12 14:24
If a person with PD or a caretaker knows one thing that can make someone else's life just a little bit easier, what a tremendous gift that is to the person who can implement that suggestion. Lohegr1n's response certainly took my eye and I have read it and re-read it - as a person with PD, he certainly brings a dimension to the forum that is most welcome. I am referring to the "tough love" and "malingering". When you are so deeply involved with caretaking and for a long period of time, you do get short with the PD person and he just reminded us of how the PD person feels and it's easy to overlook their feelings because you're so tied up in your own. Especially when they have changed so much in personality and just in every day life, so thank goodness for all the help we get here. I also read one of Annwood's reply - don't remember which subject right now - but it certainly hit home, and helped me so much that particular day. One never knows the impact they have on another person and often times when I don't have time to write, I read the forum daily and always take away something that is helpful - even if it's just knowing others are going thru almost the same things you are.

By karolinakitty On 2009.12.12 23:43
thanx for settin me straight in that subject Al ..

jim does talk about the "tin man" effect. He loves to reference Wizard of OZ, says it isn't just a movie, it references go deep in life analagies.
In the "tin man" mode he feels like he's so stiff and stuck, that if he could just get a little "oil" on things he probably could move better.

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