Dealing with less - less mobility, less independence

I'm chafing.  I fell about two weeks ago, ending up briefly in the ER.  No permanent physical damage, but my confidence is shot.

I can't pretend that the cane is okay any more; probably I was deluding myself.  Yeah, if I could be assured that I would always pay 100% attention, 100% of the time.  Yeah, right.

Fortunately, I have a used rollator that works okay, (and I know how to use it) though it doesn't fold, so isn't great for going anywhere in the car.  I also purchased a new rollator, which does fold, but it weighs a bit more, and I find that I'm so worried about falling when I take out/put back the rollator that I want to hold onto the car with one hand, which really means I don't have both hands free to lift the rollator into the back seat or the trunk.  Which means that I effectively can't drive - independence, I hardly knew ye.  Overnight.  Not ready to stop driving yet.

But I'm walking so tentatively now.  The fall was caused by momentary inattention, not symptom progression.  But I hold onto everything when outside, especially my husband.  And this is made harder by having my left hand in a splint.  But today I took a shower unaided, and got out of the shower unaided  (yahoo!)  Big step forwards.

I've done all the balance challenge exercises that my PT used to challenge me - and I can do them.  Except for the instability pads/stepping stones - so I'm buying those.  It's not my ability.  It's my confidence that s**ks.

I haven't been driving - partly because of the splint, and partly because I know I need the rollator (and even if I could use the cane, I use the cane in my left hand, the hand with the splint).  This has meant an overnight loss of independence which has made me grumpy.  My husband is happy to drive me, but I'm not ready to be that dependent overnight.  This means I need to practice putting the rollator in the car and taking it out.  I know I can do this mentally, but my body isn't quite sure yet. 

Update:  starting to put rollator into back seat, then take it out again.  Yay!  Even drove a little.  Baby steps, but steps!

Finding a PD physical therapist

I just found out a way to find a physical therapist who knows about Parkinson's in the US.  Thanks to Dr. Ryan Duncan, who presented at the Davis Phinney Victory Summit on 8/10/2018.

Use the website MoveForwardPT.com, from the American Physical Therapy Association.  Select the zip code or city/state.  This will give you a list of all physical therapists in your area, but only some of them will have experience working with PD.  So then from the list of specialties choose Neurological - which includes PD.

For more about why you would want a physical therapist, see: https://parkiesupport.blogspot.com/2018/02/physical-therapy-individualized-help.html

Physical Therapy - individualized help

Early on you will need to find a PD-experienced physical therapist. (That’s my personal opinion, but it’s based on my personal experience.)

Are you having problems with stiffness, with balance, with your gait (how you walk), slowness getting into / out of cars, problems turning over in bed?  Maybe you think you might need a cane or a rollator (used to be called “walkers” but now they can be used indoors and out, include a brake because they have 3-4 wheels, can be pushed without lifting, support walking at a good clip, and often can be folded for transport; see the image below.)  A PT (physical therapist) can help with all of these.  While a good exercise program is vital for PD, and you surely want to have that, too, physical therapy is individualized exercise, specific to your individual needs.

Should you wait until your doctor recommends PT?  I don’t think so.  I asked my doctor at the first followup appointment after my diagnosis if I should see a PT; since I was travelling a considerable distance to see the doctor, he didn’t know any PTs in my area, and asked me to call him with the name of a PT so he could do the formal referral (to make the insurance company happy).  The doctor was happy that I was being proactive.

Why do you want a PT with PD experience?  PD is way different than an athletic injury or recovering from surgery.  You want a person who knows the problems you are likely to have (including the fear of falling that can cause you to fall), and has experience helping you practice strategies that work.  PD has its own unique challenges, and you don’t need to be teaching your PT about them (or persuading them that these are real problems!)  Update:  Here's an easy way to find a PT with PD experience: https://parkiesupport.blogspot.com/2018/08/finding-pd-physical-therapist.html

A good PT can give you an exercise program that addresses your specific problems or deficits, help you choose and then teach you to correctly use a cane/rollator/wheelchair if you need one, and may be able to help you find other specialists when you need them – like an occupational therapist or a speech therapist.

My PT worked with me when I was first diagnosed to help me with walking and using a cane (I was falling and couldn’t walk straight).  About 6 months later, I sought her out again when balance had me worried again; after working with her, I was able to walk inside comfortably and rapidly without the cane, and reserve the cane for outdoors and crowds.  I also practiced dealing with compromised balance and became more confident in my abilities.  This isn’t trivial; if you have balance problems, just worrying about falling makes you more likely to fall.  Here are some of the ways that PT can help: http://www.moveforwardpt.com/SymptomsConditionsDetail.aspx?cid=98297eb9-eaa1-452e-9489-b46eedf27e80#HowCanPhysicalTherapistHelp 

        PT is exercise – it helps keep you flexible, and strengthens your muscles so you can do more.  And part of the therapy is exercise; expect to work.  I learned not to schedule any other exercise for days when I had PT because I was tuckered out.

So how do you find a good PT?  If your doctor is located closer to you the doctor may have somebody in mind.  Since many of us travel quite a distance to see the neurologist or movement disorder specialist, the doctor may not know anybody local to you.  Why do you want somebody local?  Because you may see the PT several times a week for several weeks.  Even if you still drive, you want the drive to be short when you go so often.

Ask everybody – I got the same name coupled with an enthusiastic recommendation from the health club I was going to and also from a friend.  You can also call PTs in your area and ask what their experience is with PD.  Here are some additional suggestions for finding a PT: https://www.fsbpt.org/ThePublic/FindaLicensedPhysicalTherapist.aspx 

You also need to ask the PT:  Do they accept your insurance?  Can they see you at a convenient time for you?  Can they see you at a place that works for you – their office or your home.

Besides whether your insurance covers this particular PT or PT practice, recognize that you will usually have a co-pay for each visit; some insurance may also put a limit on number of visits/year.  Find out.

The extra cost doesn’t mean don’t do it.  PT can bring significant improvements in the quality of your life.  PD is a movement disorder, remember?

Remember that your insurance probably wants a referral from your doctor, so call your doctor’s office to find out how to get it; you may just need the name and phone number of the PT you want to work with.

When you first meet with the PT, ask about their expertise with PD.  Also, talk about your goal – what are you hoping to accomplish?  Sometimes you don’t know, beyond, “I want to feel better/move more easily/fall less.”  Ask the PT what’s their goal for you.  Also, how long should you be coming?   After seeing you move and talking to you, the PT should have a plan with some kind of end point.

Don’t wait until you can’t move.  Take control of your life.

Images from Pixabay.com.