Adapting to Life w/ PD

May 24, 2013 8:37 AM

My father was diagnosed with Parkinson's Disease 8 years ago, when he was 60. He is now scaring the crap out of me-- I keep thinking he's going to fall or otherwise hurt himself-- and I don't know what to do.

Have you cared for someone with PD?

Take a walker, for instance. I'd love to see my dad using a walker because he is constantly losing his balance. A walker with a little seat that flips down for resting sounds very nice. To me. To him, it sounds like another nail in his coffin.

I've seen him fall and it's not a pretty sight. But, to be fair, I'm a big softie and I was horrified to see him tip over and bleed. Dad and Mom had a good laugh about it. Yikes.

Michael J. Fox's website is a great resource, but I don't know how to talk with my father about my concern for him. In a way, I just want to buy some awesome, useful adaptive equipment for him to use when and if he feels like it. But, I'm basically wondering, has anybody here navigated a situation like this before? How did you decide what was appropriate, what resources did you find helpful...?

I'm sorry this question is a bit muddled, but I do feel kind of lost and alone. Help?

posted by little_dog_laughing to Health & Fitness (10 answers total)

Have his doctor refer him for an occupational therapy (OT) evaluation. It is PT/OT's job to figure out what sorts of assistive devices people need and make those recommendations, you should not need to figure it out yourself.

And what would really be a nail in his coffin is if he had a serious head injury or broke his hip in a fall. Ask how he likes the idea of weeks in the hospital and months in rehab... Getting him to understand that taking measures for safety are ways to potentially prolong his life and quality of life by avoiding serious injuries seems to be a good way to help him see he's looking at it backwards.
posted by treehorn+bunny at 8:54 AM on May 24, 2013 [4 favorites]

Definitely get him set up with a good PT. Helping people with mobility issues like Parkinson's to improve their balance, decrease falls, and adapt in an ongoing way to progressive mobility issues -- this is literally what I do all day. A good PT will be able to let him test out a few different walkers, teach him how to use them safely, and show him why using one in the first place is a good idea for him. It's pretty normal for people with PD to have a slightly (or tremendously) distorted perception of how good their balance is, and someone who regularly works with people with these issues will have kind, effective ways of getting the message across that they would benefit from a walker.

If he is reluctant to go get physical therapy, perhaps you could pitch it to him as a way of getting stronger and improving his balance? Or leave a message with his doctor, suggesting that PT might be a good idea for him, since he has been having more falls?

Please feel free to memail me - this is a really difficult situation, and I'd be happy to answer questions or direct you toward more resources.
posted by jennyjenny at 9:12 AM on May 24, 2013 [1 favorite]

Also, here's a link to an answer I gave someone else a while back who was worried about falls at home, perhaps some of these things might be useful to you?
posted by treehorn+bunny at 9:32 AM on May 24, 2013 [1 favorite]

I'm a bit surprised that the only mention you make of your mother in this is to say that she and your father had a laugh about his fall. It seems to me that a lot of what you're thinking of doing is her responsibility, and I don't know how far you'd get talking to his doctors or trying to set up appointments if she's not on board with it.

I feel the first thing you should do is have a serious talk with your mother, and explain your concerns to her. She may have been putting the best face on it, and actually be really stressed by the situation, in which case having her concerns reinforced by your support may get her more actively working on things. On the other hand, she may be an eternal optimist who thinks things always work out somehow, in which case putting your concerns forward fairly forcefully may get her to accept the reality a bit more.

For a more specific suggestion, is there anything he used to love that he can no longer manage for lack of mobility? A lot of people will use the wheelchair service to get through an airport, and I know my own father, who was very obstinate about not wanting to use a wheelchair, was prepared to use one when visiting museums, which he otherwise would not be able to get around at all. So if there was a football match, or art gallery, or concert of some kind that he would actually like to see, then offering to arrange a visit with the caveat We'd need a wheelchair to get through the crowd safely, or It'll be a long walk round, and we'd need a wheelchair to make it to the most interesting part or whatever would help him get used to the idea, and help associate mobility aids with actually managing more stuff, rather than the "one foot in the grave" reaction.
posted by Azara at 10:20 AM on May 24, 2013

Hi there little dog. My dad has Parkinson's too and it seems like he was diagnosed at about the same time as your dad.

Here's what I'm trying to do: at my house I'm gearing up to have as many safety items as possible. I'm going to put safety handles in the bathrooms and things like that. I'm trying to look out for furniture that is easy for him to get in and out of and basically set things up so that without discussion, he can do as much unassisted as he can for as long as he can.

His dignity in this area is very important to him and therefore very important to the rest of us. Physicality is very important to him. Being a guy, to him, is being a jock. Playing sports is what you do with friends. So he still plays tennis, though it is doubles, and he has to rest a lot.

He has recently given up mowing the lawn. This is a big deal to me, because I know he will probably not mow the lawn again. I think it is a big deal to him also. On some level, he's probably relieved. But the important thing is that it is his body, his autonomy, and his illness and it's important that he own these decisions and as well as his relationship with his doctor and therapist and with my mom.

It's a highly personal decision, how to handle this sort of thing, and circumstances are different for everyone, but I would be inclined to leave it alone or back channel the concern to your mom or the doctor. If no one is into having this conversation, I think you should consider leaving it alone and seeing if you can quietly do anything to mitigate the dangers you're concerned about.
posted by A Terrible Llama at 10:24 AM on May 24, 2013 [2 favorites]

I'm going through something similar but my dad has stage C/D congestive heart failure. I've let him have his independence and living alone now for a year since my mom passed away. However, in that time he's fallen 5 times, all equaling hospitalizations--2 of which were via the ambulance. It honestly took the last one to scare the crap out of him and make him realize that he needs help. He now lives with me and my husband and our son. He has to use a walker. Trust me, he's beyond depressed about his body failing and he's on Lexapro. I talk with him about his feelings (and he's not the type to talk). He actually likes the walker. It gives hmi a sense of security and now, he likes living with us. He gets meals, a clean house, pill reminders, etc. He's old fashioned where my mom did EVERYTHING for him. He had a year of doing it on his own and he hated it. Now--he's "living the good life" all over again.

What i"m saying is it sometimes requires a scare for them to realize that they need assistance. It's not a nail in the coffin, it's a change. Humans are just reluctant to change. He needs to understand that a walker = independence in a safe-zone.

And what also helps my dad is that he realizes that most other kids would have put their dad in a home. I won't. It's not to say I'm fearing the diaper stage (and hopes he doesn't get to it) but to him (and me) putting him a home is more of a nail in the coffin than a walker.

I wish you luck. It's draining to see them dip in health.
posted by stormpooper at 10:26 AM on May 24, 2013

My dad has Parkinson's, too (as well as dementia), and he's now in a care home. But while he was living with me, here is what helped:

- Equipping the bathroom with grab bars, a slip-proof mat, and a shower chair. That shower chair made a huge difference - it's safer and less tiring to sit down in the shower.

- A railing/grab bar for the bed, and grab bars in the hallway. I removed the throw rugs from the house, made sure all cords were secured up off the floor, and in general removed as many tripping hazards as I could. If your parents have pets, make sure the pets do not run in front of your dad or between his feet, or jump up on him.

- I got him a walker with a padded seat so he could sit down if he got tired/dizzy. I also got him one of those alarms that hangs around the neck so he could press it and call for help if I was not around. And I enlisted some of my neighbors (who knew my dad from back when) so he could call them in case of emergency, be my alarm backup, and look out for dad in general.

- I got him a physical therapist, but he hated the PT and wouldn't do the exercises. YMMV here.

- He has a great neurologist who prescribed him Sinemet and got him into home PT. Sinemet is the standard medication for Parkinson's; I know its effectiveness wears out after time but it did help my dad in the beginning.

Good luck! Definitely get your mom on board - since she is living with him she needs to step up and help. If she's in denial or not coping well, she and your dad should both meet with his neurologist and/or a therapist.
posted by Rosie M. Banks at 10:50 AM on May 24, 2013 [3 favorites]

Rosie M. Banks has it. Grab bars in the bathroom and where ever else they would help, no throw rugs, consider 'night lights' if dad needs the bathroom during the night. Navigating stairs will be a hurdle eventually. A walker with a seat is a godsend when weakness/dizziness strike suddenly.
Consider an electric chair. No, don't call the warden, call Lazy-boy about a chair that will help to lift dad up.
Your biggest problem is dad's head-in-the-sand attitude. He probably sees this as an assault on his manhood, and he fears being a weak burden. The current culture mocks the infirmities of age, and dad does not want to be a joke. Your mom is going along with his attitude because it is so important to him.
Dad's condition will deteriorate; there is no cure for Parkinson's. If he won't face facts now, he will in time.
posted by Cranberry at 11:11 AM on May 24, 2013 [1 favorite]

My father has Parkinson's, and my father-in-law had Parkinson's as well. I recommend that you read this book as there are many types of Parkinson's symptoms, and you really have to understand these different types to help your father better.

A couple examples.

If your father has difficulty initiating movement, he may need a special type of walker over regular walkers that need to be pushed to get going.

If he is falling in his apartment, there is a trick with floor markers which can result in a dramatic reduction in falls.

(These are just a couple examples, there is so much more to know).

Finally, I want to emphasize the importance of a good doctor (preferably a Parkinson's specialist as opposed to a general neurologist). Two years ago, my father was in such bad shape that it would take him 5 minutes to walk a few feet and he couldn't get in/out of a car without assistance. Then we moved close to the Struthers Parkinson's Center in Minnesota, and within months, he was able to enjoy miles-long walks around a lake and I haven't had to (physically) support him since. The right meds made all the difference.

Good luck.
posted by rada at 3:41 PM on May 24, 2013 [1 favorite]

I've had Parkinson's for nearly 20 years - retired on disability at 49 after 31 years of work with it, but levodopa/Sinemet works well for me and I'm not nearly as disabled by the disease as I thought I'd be by now. I am, however, totally disabled by end-stage lung disease and can't even manage a walker anymore, though I used one for years. I now use a motorized wheelchair and get around on the city bus and go nearly everywhere I want to, but it has NOT been easy, I can assure you.

This is what I'd tell your Dad: If he wants to live long enough, and intact enough, to be a useful husband and father, as opposed to being a burden on the people he loves, there is only one thing that will work and that is that he learn to adapt. The PD will gradually reduce his independence and make things more and more difficult for him - no two ways about it. What he has to do is accept that fact and then refuse to be cowed by it - he has to learn to use whatever resources he has available to keep moving and keep his head above water, to refuse to cave in even when he wants to. He'll have to scratch the whole pride thing if he wants to keep living as he is now - there is simply no room to be too proud to be seen with a walker or a wheelchair. Just do what he has to do one day at a time and grab every moment.

Good luck.
posted by aryma at 9:34 PM on May 24, 2013 [1 favorite]