How Much Therapy Can a Person Take?!

The last two weeks have been packed with appointments! Jamey's doctor ordered him home visits from a Physical Therapist, Speech Therapist, Occupational Therapist, and a Social Worker (not the kind that checks for abuse, the kind that checks to be sure you are getting the help you need). I tried to hide his bruises anyway, just in case. :)

The therapists were given strict instructions from their company, to get all of the therapy done within as few days as possible. Whew! they are following those directions to the letter. We got a call the day after we saw the doctor, and the PT wanted to come over right then. Hmmmm. Okay, we have nothing to do all day, so sure, why not? Every one of the other therapists have either called to make an appointment the same day or the day after. Each of the three therapists needs to meet two him times per week. So, that means last week we had 6 appointments, each lasting 40 minutes to an hour, in only 4 days. And that doesn't include the social worker or the PT who did the evaluation.

In addition to the confusion of having so many people coming and going through the house, three of the four of them had the same length red hair, similar features and the same build. Honestly, they looked like they'd been cut from a mold or something. Is this a new Stepford Therapists thing? Us old folks have enough trouble keeping things straight. Oh, I know, they're trying to confuse us so we'll need more therapy!

Thankfully, I didn't schedule anything on Friday so Jamey could have a day off. Good thing, too, since he was moving pretty slowly by the end of the week. At least the last couple therapists from Thursday were able to schedule themselves in advance and I know what's coming this week.

I know what you're thinking, why would the doctor order this kind of help 20 years into the disease? I thought you'd never ask. With the fluidity of Parkinson's it makes sense. In fact, I think it would be a good idea for all doctors of Parkinson's and the like, to order therapies every couple of years because of the progression of the disease. As the disease changes, so do the requirements of the patient and the caregiver. Having various therapists in the house, while inconvenient, was helpful to us both.

Here is a breakdown of the specialty therapists, in case you don't know the differences.

PT (Physical Therapist): For the physical rehabilitation of people recovering from injuries or disease. The PTs goal is to get the person moving again, restore mobility. In the case of a chronic or terminal disease, the PT will teach patients how to prevent progression of symptoms, or manage their condition more adequately. Some crossover with OT.

*Our PT gave Jamey stretches to keep his posture straighter (I had started referring to him as Pisa), and got him up and walking. The walking was fine while she was here, moving him along every minute, but once she left he wasn't able to do it on his own. I wish I could work with him every second like she did, but it isn't practical with everything else I've got to do. She also started the ball rolling for a new power chair for Jamey.

OT (Occupational Therapist): For helping the patient with ADLs (Activities of Daily Living). The focus is primarily on enabling the patient to engage in meaningful activities of daily life as seamlessly as possible. The OT will be able to recommend electronic equipment, toileting helps, and dressing aids, as well as help set up the home for the patient's needs. Some crossover with PT and ST.

*Our OT wasn't as knowledgeable as I'd hoped. She couldn't answer the questions we asked about urinals and keyboards. It did seem we knew more than she did about equipment overall. She helped him with some hand putty to keep his hands limber and gave suggestions about moving the bed closer to the wall. She did help somewhat, but not with the things we really needed. I'll have to do my own research.

ST (Speech Therapist): For helping with not only speaking, but cognition, memory, and eating issues like swallowing and choking. ST can assist with keeping food in mouth, voice volume and recommending utensils and tools for the above. Some crossover with OT.

*Our ST is very helpful. She has given Jamey ways to increase his voice volume so I can hear him better, gave him tricks to help memory, and helped him with his swallowing. Because Jamey had been to an ST before, I didn't put much stock in this therapy, but she has turned out to be the most help!


Social Worker (sent by Therapist company, not the state): Answers questions about whether you qualify for SSI, how Social Security and disability work, and whether you are being given the correct information to help move you forward.

She was able to answer our questions about whether we qualified for SSI, etc. She assessed our situation and complimented us on how open and ADA compliant the house was for Jamey. Kudos to my father-in-law for that!

So, we've started another week of back to back appointments. Can you tell I'm smiling? We will also take Jamey to Sacramento to be evaluated by Kaiser for a new power chair (bummer, because Kaiser and Medicare told me less than a year ago they wouldn't pay for a new chair so we went ahead and purchased one out of pocket) as the PT thinks it doesn't really fit him properly.

Life is good! It continues on (better than the alternative, I suppose).

Hidden Figures

When Jamey was first diagnosed with Parkinson's, our immediate concern, of course, was how this would change our lives. The day to day functioning, movement, and overall quality of life was on our minds. However, one aspect of the disease we didn't actually consider, was the overall financial burden. Of course we knew we would have more doctor appointments--that was a given--but we didn't think of all of the hidden costs that we would incur.

At the beginning, it wasn't too bad, but as the disease progresses, all kinds of issues crop up. Issues we never thought about.

Medication - The more years we have with PD, the more medication is required to keep his body in check, to keep it functioning, to allow him some amount of control.

Battery changes - This only relates to those who have had Deep Brain Stimulation surgery. It only occurs about every 3 years, but it can be costly. Last time we had a rechargeable battery put in to give us more time. However, 9 years goes by very quickly and our time is just about up again!

Botox - Yes, Botox! Dyskinesia is so strong at times, it clamps his eye shut and causes pain to his face. So every 3 months we get Botox on that side of his face, to help him function better. It really works, but of course, it's pricey!

Chiropractor and PT - It's a continual process to keep his posture upright. Sometimes he is so severely tilted to one side, that his neck causes horrible pain!

Dental Care - It is now necessary for Jamey to get a cleaning every 3 months because he is not able to brush his teeth properly on his own (even with an electric toothbrush). A deep cleaning is necessary (and often painful) to keep his hygiene in check. In addition to the cleanings, he must take premeds before each one, to prevent infection to the brain (this is only because he had the DBS surgery).

Extra Caregivers - I was able to do all of this myself for almost 20 years, but now I cannot do it all any longer (the stroke didn't help). We've had to hire more caregivers and we're at the top of the care schedule, which means we pay the most per hour because of the care needed. This also has its own set of issues. If we go through an agency, they take care of all the taxes and legal end of things. But, if I hire an independent (half the price), I have to have them fill out a W-9 and at the end of the year send them a 1099. If I pay them more than $2,000, I have to take out taxes myself and make sure I am legally on course. It's a great deal of work for the average sod!

Medical Equipment - This includes a patient lift (to help get him up from a lying or sitting position), a van to accommodate his wheelchair, various lifting, dressing, and moving assists, safety bars for walls and toilets, and several kinds of wheelchairs. Fun stuff!

Diapers - This is an added item now that we're in our 20th year with the disease. What is most difficult, is finding the right one that works at the right time. Because the disease changes constantly, what works one week my not work the next. So, we spend a good deal of money trying to find what works for him at a given time, and we have a lot of left overs that don't work at all. I keep all the "didn't work" items because at some point they may work for him. Hmmm, maybe we'll have to add storage unit to this list one day! LOL

Toenail Cutting - He can no longer cut his own toenails. I was able to do it for awhile, but now it's just too difficult for me. I don't want to risk cutting his skin! So we will have a Podiatrist do it for us, once I can find one nearby.

Eating Utensils - A special set of eating utensils is very helpful to Jamey. I purchased 2 sets and it was close to $200 (see "Helps" at side margin), but it has allowed him to continue to eat on his own without help. So worth it!

This is not an exhaustive list. Each person will have their own experience and each person's body will respond differently to the disease. There may be things we haven't had to deal with (swallowing issues for instance) that you may have. I know it looks daunting, but remember, this is after many years with the disease. I just want to point out things you might not think of, so you can be saving for them right  now. If you have good medical insurance, that's a plus! Medicare used to pay for many of these items, but they no longer do. I hope that will change back at some point.

The most important advice I can give you through all of this, is to enjoy every minute you have with each other. Whether you are a husband, wife, parent, sibling, or a friend. Every minute you have with each other, even if it's spent caring for them, is precious! Don't let the financial end of things discourage you to the point of depression. Remember, the most important thing is that you have this loved one for another day!