Working with Home Health Agencies

All ALS patients at some point will have help of some kind come into their home. From physical therapists to home health aides, you open your doors to strangers and invite them in. In November at our quarterly appointment with the ALS clinic we discussed needing a couple pieces of equipment, a hoyer lift and a shower/commode chair with wheels. It seemed like such a simple request, but as I've found it never turns out that way.

We were assigned to a local home health agency to come out and evaluate our needs. Why do we go through these channels when you could just go purchase or borrow them from the loan closet? Well, we are hoping that Medicare will cover some of the cost of these two items and as wonderful as the loan closet is, you are limited by what is available. Medical equipment is a huge expense in the ALS world and these two items will likely be in the thousands of dollars. So, we do our best to work within the system.

This may come as a surprise to many of you, but having strangers in my home is stressful for me. I love the company of friends and family, but strangers coming in to "evaluate" our situation are much less welcome. This has caused me a great deal of stress over the past couple weeks. Many of the blogs I've read by ALS caregivers discuss the stress related to loss of privacy. This I can commensurate with and I know that it will not become less in the years to come, but more. So, I'm having to manage my stress level and try not to get angry.

Some of my stress is going to happen regardless of who walks through the front door, but I think there are things that are external and could be better controlled through the home health agency. I don't know how other agencies work so I can only address what has happened in our case. The phone calls started before Thanksgiving, with urgent pleas to see the patient as soon as possible. Why such an urgency, I don't know but they were anxious to get started right away. They let us know that the first appointment would be long and take a couple hours. They were a little off, it actually was about 2 1/2 hours. That's a long time for someone with limited energy.

In the first appointment they spent a considerable time reviewing and entering Patrick's medication into the computer. How this is related to the hoyer lift or shower/commode chair I'm not sure, but they were diligent about it. I thought it was interesting since the ALS clinic and home health agency are both part of the same system so why didn't they already have this information? We watched while all the medications were entered into the system. To be fair they did have some information in the system - some current and some not, but it was quite a bit of time spent gathering that piece together.

After this appointment the phone calls began, they called daily asking for more appointments - both physical therapists and occupational therapists. Even after I explained that we wouldn't be having appointments during the holidays. They kept calling. Additionally, I was very clear that morning appointments are not scheduled, only afternoon. This was a surprise to every person that called. To be honest, my stress and anger with the constant barrage of calls was starting to affect me. So, when I got a call from the original physical therapist who wanted to come out that day and mentioned two appointments already scheduled with another therapist in the following week that I knew nothing about (who makes appointments this way?) I lost it... yeah, I won't repeat the whole conversation, but it was likely not my finest hour, however it felt really good. I'm pretty sure he's afraid of me now.

So here is my list of recommendations to physical therapists, occupational therapists and others that enter my door:

• Knowing a couple people with ALS does NOT make you an expert.
• Disease progression is unique to the individual - it starts in different locations, has different symptoms and progresses at different speeds.
• Don't assume to know - even at clinic with ALS experts, they ask the patient about their challenges.
• Listen to the patient and caregiver. I don't expect you to be an ALS expert, but I do expect you to listen.
• ALS does not impact intelligence, don't patronize the patient because his speech is slow.
• Be realistic in goal setting. An ALS patient is not going to run a marathon in the next few months.
• Energy for an ALS patient is limited; so although you need to assess their physical patterns - do so with the understanding that they will become exhausted quickly. Adapt your usual routine, watch for exhaustion levels and listen to the caregiver/patient.
• We try to schedule only one activity a day. Not because we're lazy, but because that's about as much as Patrick can do comfortably, this way he doesn't overexert himself. So, don't try to schedule multiple appointments in one day.
• Time - As with everyone our time is valuable. Calling the same day and expecting to get an appointment that day, even hours later is NOT ok. Yes, we still have a life outside ALS!
• Work with the ALS Clinic staff, they are experts and can help with questions, concerns and recommendations.

I have to add this caveat, we have found some of the suggestions from these folks helpful. So it's not a complete waste of time. Whether its worth the aggravation is yet to be seen. If we get the equipment we need - I'll say yes.

I hope all is well with you and yours! Happy Holidays!

Managing Change: Chairs, Bathrooms and Dogs

The days seem to go by quickly and changes big and small creep up on us, generally with warning, but not at all welcome. With ALS, the losses are continual, just when you've come to accept one you are faced with another. I've learned quite a bit about the Five Stages of Grief: denial, anger, bargaining, depression, and acceptance. In some ways I go through these stages (not necessarily in that order) for every change we face. Some changes are accepted easier than others and with very little concern, others are painful and the loss is profound. 

Seating Arrangements
This month we've been faced with a change that is difficult, although perhaps from the outside seems less significant than others. We are faced with managing the seating arrangements.

One of the most complicated movements our bodies make is getting up or down from the seating position. It requires strength in the legs and torso, as well as the ability to balance. Patrick has required help for about the past six months to get up and down, from both the couch and dining room chairs. Over the past month it's become apparent that it was getting too difficult for me to pull him into a standing position and honestly it was taking a bit of a toll on my back and shoulders. Caitlin would often help get him up (she has more upper body strength than me) but she also was starting to have difficulties. Of course, my fears were that I'd throw out my back or Patrick would wind up on the floor and we'd have another 911 call to make. So, I've known for a while that a change was needed.

Patrick purchased a Lazy Boy chair about a year ago that has a lift in it. It's not the most comfortable chair, but it does make getting him up much easier. So, he's now using this chair. I suppose this doesn't seem like a big change? But, for us it is, we spend a few hours a day sitting on the couch doing emails, genealogy and other computer stuff together. We've moved the Lazy Boy chair close to the couch but it's not the same. We continue our routine of computer work together and we manage the best we can, but it's a difficult change.

There are options that we'll continue to consider, such as using a Hoyer lift to get him on and off the couch, but I miss the days of simplicity of us just sitting down and not worrying about falling, balance or pulled muscles.

Bathroom Remodel
The bathroom remodel took about a month and was finished in September. It's been a tremendous help, with the shower enlarged, creation of a zero threshold and enlarged doorway. The bathroom for an ALS patient is a treacherous place and we still have to be very careful how we manage his activities, however the new bathroom takes away a couple of the obstacles.

A month of change for the remodel of the bathroom was stressful on the family. I've never been good with remodeling and less so now. The constant flow of workers, noise and inconveniences. Patrick and I for a short time had to use the downstairs bathroom, this was a major challenge with his mobility issues. I'm happy to report, however, that we were successful and he didn't fall during this period - YEAH! We did a couple nights at our local hotels to have access to a disability shower. It was quite a month.

We absolutely hired the right contractor, Hal Franscioni, with Accessible Home Renovations, who is a specialist in accessibility remodels. Not only was Hal a great contractor, but he had a sensitivity and concern for us throughout the remodel which included doing all he could to be the least intrusive. We also used our favorite painter, Beth Swartz, of Gemarius Painting to finish off the cabinets.

Initially, we were going to renovate the bathroom just to make it disability friendly, not aesthetically pleasing. However after much discussion, we chose to make the bathroom remodel look as nice as possible as well as being user friendly. The zero threshold shower is popular these days so the bathroom is an upgrade and increases the value of our home. It took a little longer and cost a little more to do it this way, but I think it was the right decision for us.

See, no step into the shower!

 

New Shower and Tub

Can you see me in the mirror?

Jake

Jake

By far the most positive change to report is Jake, our new dog. He is the easiest addition to the family we've ever had in the canine community. He is 8 and we adopted him from the Sacramento SPCA. He is a tremendous source of entertainment for us every day! I don't know where he was for the past 8 years, it appears he was a dog model - check out this Mighty Dog ad.


Jake in his former life as a model

Just for the record - he sleeps with Caitlin and has few boundaries which we've never allowed any past dogs. But he's so little, how much trouble can he be? :)



Jake in his Halloween Costume - Being Carried...

Happy Halloween and Happy Fall!

Notes on Life #6

Each time I write a "Notes on Life" blog I check back to see when the last one was written to determine what I need to include. It's been quite a few months since the last "Notes on Life." These blogs are a personal diary of things happening in our daily life. It's been a tough summer with Patrick's illness, but life always gives us a mix of happy times and trying times, so there is still much to celebrate.

Elizabeth Faith Carrabello

Elizabeth Faith

The most exciting news is that our fourth grandchild, Elizabeth Faith Carrabello was born July 28. She is beautiful and looks quite a bit like her siblings. She was born with slight jaundice like her sister, Sofia, so she spent her first few days sunbathing under the UV lights. She's much better now and home with the family.

Sofia is slowly adjusting to not being the baby anymore, although I don't think she likes being demoted. The boys are wonderful with the baby, very attentive and helpful. So, Elizabeth seems to be settling in nicely.

Shari and Patrick

ALS Fundraiser at Zia's
In August, an old friend of Patrick's, Shari Fulton, held a fundraiser for our ALS Walk Team Timmons. She is the owner of the wonderful Zia's in the El Dorado Town Center. If you haven't been there, I highly recommend you head over.

Zia's has homemade gelato, cappuccino and pastries. I think my grandsons tried each and every item, except the cappuccino (trust me they don't need caffeine).  A big thanks to Shari for hosting this event, Tina for organizing it and Corrinne who managed the raffle. The event brought in over $1,000 for the Sacramento ALS Association! I've included some of the photos from the event, some are mine and some are by Dara Fong of Fongfotos.com. Dara's are the better ones!



Patrick and the Fabulous Tina

 The Blue Shield campus is nearby and Patrick was able to see quite a few of his Blue Shield friends. The week before the fundraiser, Rob Geyer, Senior Vice President at Blue Shield, did the ice bucket challenge for Patrick and challenged some other staff members to join the cause. So at the Zia's event Bill Brown, Desmond Moynihan and Paul Vota, all took the ice bucket challenge, in front of the crowd gathered for the Thursday night concert series. Funny how things are viewed by children, Anthony told his mom that grandpa is famous!

Additional ice bucket challenges were held in Patrick's honor at all the Blue Shield locations from El Dorado Hills to Southern California and San Francisco. We received videos from all the different challenges and enjoyed watching them all. The Blue Shield employees continue to be such tremendous supporters of Patrick and the ALS Walk and we look forward to seeing many of them on October 4th- at the 2014 Walk to Defeat ALS! Here is Rob Geyer's Ice Bucket Challenge:

 

And here are the challenged... Desmond, Bill and Paul in response:




Before Pic: Desmond, Bill and Paul




After Pic: Desmond, Bill and Paul


My mother taught me at young age to send thank you cards. Frankly, I'm embarrassed that I've neglected so many over the past year. Honestly, the amount of thank you cards I owe to so many people is a bit overwhelming. So, to all of you who supported the walk, took the ice bucket challenge, dropped by meals, shared your time, sent us notes and emails... and the list goes on, please know that we are very touched by all these gestures. They don't go unnoticed and are not unappreciated.


Christian, Caitlin, Patrick, Cheryl & Anthony
 

Grandkid Craziness

Paul and Patrick - Blues Bros
 




Shawn Rogan and Family

Grandsons: Football, Baseball, and Learning to Get Back Up
Our grandson, Anthony, has played football for the past two years. He loves all things football and during football season its all he talks about. This year his younger brother, Christian, also tried out for the football team. The two boys went to football camp and spent a couple weeks at tryouts. Much to our shock both of the boys were cut from their respective teams (Christian is 6 and Anthony is 9). I think Christian likely didn't make the team because he thought tackling was "hugging" and he liked to hug :). Yes, he told me this one night after practice.

As a mom, when your child suffers these types of bumps in the road, you want to shelter them from the pain. Let me tell you as a grandmother, you really just want blood. My initial response to Corrinne after hearing the news was, "What the h***!" No, I didn't go crazy and start screaming at people - not really my style, however tempting. So, I sat back and mulled it over. A few days after the news Anthony told me, "I'm going to try out for football next year, grandma." He wasn't mad or bitter, he just wanted to be a football player. So, he would shake off the dust and try again next year. I was so proud of him in that moment, more proud of him than me, since I had been contemplating nasty retributions for the league. The truth is that he likely learned more from this experience than he could have ever learned by making the team. I want my grandchildren to be strong because I know life isn't always "fair" and there will be bumps in the road, challenges to meet and times when they have to get back up and dust themselves off.

So, no football games this year.... but the boys opted for baseball, a sport I'm much more familiar with having played about seven years of softball in my youth. We watched them play last week, and you know what? Anthony is a natural! Perhaps there are multiple silver linings in this story. Christian, well, he's cute and looks good in the uniform:)  Because I am a proud grandma, and this is my blog, here are some recent photos....

Anthony

Anthony the Catcher

Christian,Cute as Ever

San Francisco, Museums and Cemeteries


At the De Young Museum

We spent a weekend in San Francisco last month. It's a trip we'd been trying to go on for months. Caitlin wanted to visit the Asian Art museum and we wanted to track down some of our ancestors graves. We visited the De Young Museum, which I had never fully explored. The last time we went was to see the King Tut Exhibit and we didn't spend much time in the other sections of the museum. Now, Caitlin is quite a museum lover, so we've traversed a few over the years. She can spend hours looking around. I remember years ago taking her to the Met in New York, and she didn't want to leave so we stayed until closing. In my case, I enjoy visiting museums, but not to the extent that she does. I tend to wander ahead of Caitlin and Patrick. They seem to connect at museums, discussing different pieces and such. My enjoyment often comes from watching them, they always seem to be engrossed.

Us at Golden Gate Park

So, if you're a museum connoisseur you know that the Asian Art Museum is not the De Young Museum. The truth is I had tickets to the De Young so we talked Caitlin into going there instead of the Asian Art Museum. Well, she liked the De Young but she felt it wasn't near as nice as some of the others she visited. So we owe her a trip to the Asian Art Museum, which she heard is one of the best.


Emperor Norton

The other part of this trip was to visit some of our family graves in Colma. My mother was raised in San Francisco and her parents are buried in Colma. So we visited my grandparents graves, which I haven't been to since I was a child. Patrick's 3rd great grandparents and various uncles and cousins are also buried there. This part of his family comes from Scotland and they worked on the Trolley Cars in San Francisco. Caitlin was a great sport, considering that visiting cemeteries is not everyone's idea of a fun afternoon. However, she found the grave of Joshua Norton, the self proclaimed Emperor of the United States and Protector of Mexico. She had read about him and insisted we track down his grave. He was a bit nutty for his time (1800's), stating that a tunnel should be built under the San Francisco Bay and a bridge built to crossover. :)

Our stay at the Embassy Suites was a challenging one. The hotel was recently renovated and the Internet description did not reflect the changes made to the handicapped rooms. So upon our arrival we found that the king bed we expected was now a queen. Apparently this was a change to allow for more space on the sides of the bed. The trouble is, with ALS, rolling over in bed is challenging, so you roll with difficulty but can't shift back - so a larger bed makes this more manageable. There was nothing the hotel could do because all the handicapped rooms were changed to queen beds and the website information had not caught up with the renovations. So we decided to make it work.

I won't tell you all the problems we had with the room, starting with a constant climate of 80 degrees, which we later found out was because the renovations blocked some of the ducts and they weren't sure how to fix the problem, to a television that didn't work. It is the first time I've ever complained about a room, the manager was empathetic, knew the issues and did credit us the stay. I will say, however, that it taught me a few truths about handicapped hotel rooms:

#1 - Don't trust the hotel website, call and find out if any changes have been made and what the bathroom looks like.

#2 - 'Handicapped room' can mean a lot of different things. For an ALS person, merely putting grab bars in the bathroom does not make it a usable bathroom. I've seen many a handicapped bathroom with a tub/shower combo with grab bars - how exactly does a wheelchair bound person use that?

#3 - ADA does not require all handicapped rooms to be the same, just that they have certain features. So some rooms work better than others. Where the sink is located in proximity to the toilet can make a tremendous difference. In the Embassy Suites room they likely added the roll-in shower to the bathroom because there was a strange slope from the hallway into the bath, quite noticeable and for someone using a walker it forces them off-balance.

#4 - Having specific needs makes it difficult to make changes at the last minute. We could have potentially changed hotels but the chances that a handicapped room with a roll-in shower was available at the last minute was slim.

Funny thing is even with the nightmare hotel room, we had such a great time. The hotel is right on the bay shore near the airport, so there was a lovely view of the bay from the hotel restaurant. The museum and genealogy trek was fun and on Sunday we had coffee with Desmond and Sherrie in Marin County. So, all and all a good trip.

The Quest for a Dog
We are dog people, we love waggly tails, occasional licks and someone to pet. Since Roxie's passing a few months back, the house is awfully quiet with no one to greet us at the door. So we've been on the look out for a new furry Timmons' member. Really it's a crusade, we visit online and in person at all the local shelters on a regular basis. A couple weeks back Patrick found a pug named "Charlie" at the San Francisco SPCA. We like pugs, Denise, my sister, has them and they are funny. Oh, I should have said being funny is one of our top dog requirements.

So we called the shelter, paid $25 and put the dog on hold for 24 hours. The next day we headed to San Francisco to get our new dog, and everyone was super excited. This was a cute dog, tongue hanging out in the picture and everything. We had to get to the shelter by 5pm which seemed easy, leaving at 1pm, but unfortunately there was a major accident going into the city which caused us to take an alternate route through Marin County. This caused a lot of stress, but we did arrive at the shelter at 4:30pm, just in time to see our new dog.

The staff put us in a room with Charlie the pug, gave us a bowl of treats and left. I can tell you the only thing in that room that had one ounce of interest to Charlie was the bowl of treats. Now mind you I like a good treat too, but wow I've never been so snubbed by a dog. I sat down and petted Charlie, and his reaction was to get up and go sit somewhere else. I even called my sister and asked her about pug behavior. Anyway, to make a long story short, we are still looking for a dog... preferably one that likes us.

Our second dog adoption story, is an owner surrender of a beautiful yellow lab. We went to the Lab Rescue day at Petsmart and met a beautiful yellow lab named Sammy whose owner traveled often and couldn't devote enough time to him. We played with him for a good long time and I told the owner, "we'll take him." Well, I guess I really caught him off guard because he said, "now?, I didn't think I'd say goodbye here." So, I backed off, gave him my contact information and told him he could come see our house if it would make him more comfortable. Anyway, we have yet to hear from him... sigh...

I think we're flexible, but there just isn't a lot of variety out there these days . We have to be somewhat selective because we have small grandchildren, so a friendly, predictable breed is what we're looking for. Yes, we love the labs and we did put our application in again with the Lab Rescue. It's likely that we will adopt a lab but our hope was to potentially adopt two dogs - perhaps a lab and a smaller dog - hence the pug.  We'll keep you posted on the dog front.

A Few Side Notes:
We've decided to volunteer with the Lab Rescue transporting labs to and from appointments, foster families etc. It gives us a volunteer job and we get to spend it with some furry friends. So we will get to do some petting soon enough.

We continue to do Sunday Family Dinners. Here are some photos from past dinners.


Christian with a Bump

Reading the Headlines

Patrick and His Girls

Justin and Sofia

Sofia

Anthony, I think

I found a blow-up turkey for Thanksgiving! Yep, I'm super excited. So now I'll have blow-ups on the front lawn from Oct 1 - Jan 1, yippee!

Hope this blog finds you happy and in good health!

Awareness, Buckets, and Money

What a wonderful, exciting, tremendous month this has been for ALS patients, families, doctors and researchers!! Never in my wildest dreams did I ever think pouring a bucket of ice would be so much fun to watch - over and over again!

For me there are three very tangible outcomes from these challenges:
 
Education and Awareness
Don't feel bad if you really didn't know what ALS was until recently. Before Patrick's diagnosis my knowledge about ALS was about zilch. Unless you said "Lou Gehrig's disease," I wouldn't even know it existed. I would guess if you did a study about two months ago, less than 25% of people would know something about it (this is Cheryl's very unscientific study). What a difference a day makes, today ALS is a household word. Yes, there are those doing the challenge that likely still have no idea what ALS is, with all things we can chose to be ignorant.
 
Frankly, this challenge has created an interest in a very unknown underfunded disease. Nancy Ferguson, at the Sacramento ALS Office, informed me that the phone has been off the hook at the office with people calling to ask what is ALS and how they can help. So, although some chose to be ignorant, some also chose to make a difference. To the second group I say - hooray for you!
 
Being Connected and Staying Connected
When you are given a diagnosis of ALS, there is a strong feeling of separation from the "outside world." As human beings, we spend a tremendous amount of time considering the future, i.e. when to retire, what should be my next job step, saving for the next big trip, looking forward to children and grandchildren milestones. ALS changes these plans, it doesn't eliminate them entirely, but it certainly makes you look at time on a more immediate basis. So our thinking is somewhat different than the "normal" person.
 
To add to this change of thinking, ALS is a diagnosis that until recently was largely unknown. So, while we are thinking about the future differently we are also trying to educate folks on what ALS is. At times I've explained many aspects of ALS to doctors, nurses, friends and strangers. Again, this gives the feeling of "separation" from the outside world.
 
The unmeasurable benefit of the bucket challenges is providing ALS patients and families with the feeling of being connected to the "outside" world. As I watch these videos and see the support from friends, family and neighbors I realize that ALS is now a household word. People are more interested and educated and now when I say my husband has ALS - often the response is, "did you know, they are doing ice bucket challenges for patients with ALS?" Which always makes me smile, "Did I know??"
 
Money
Where does the money go? I think this is a very legitimate question. There have been times when I was sent an email by a friend to support them in a walk, run, jump rope, head shaving... all kinds of endeavors to bring money and awareness to a disease. Sometimes I'm familiar with the organization and sometimes not. I have indeed pledged money to a friend, merely to support the friend, not really knowing if my money was being put to good use.
 
In this, I can assure you, if you donated to the Sacramento ALS Association, you can rest easy that your money is going to help ALS patients directly. The local ALS Association focuses primarily on "patient care." This includes, a loan closet, patient advocacy and outreach, support groups and various grants for caregivers and patients. Here are a few places your money goes... 
 
Travel Costs: If you live outside Sacramento/San Francisco you have to travel to get to your doctors appointments. Many rural places in Northern California have no neurologist and the closest ALS clinics are San Francisco or Sacramento (four hours away from Susanville, my hometown). Grants are provided to families that cannot afford the travel to the clinics, which for an ALS patient often means the difference between getting the care you need or not.
 
These clinics are important in that they offer multiple disciplines at one appointment. At your appointment they rotate various specialists; nurse, neurologist, respiratory therapist, speech therapist, social worker, physical therapist, occupational therapist, etc. etc. all in one appointment. They are all ALS experts in their respective fields and can be proactive in managing your care. So, going to a general neurologist just isn't enough for an ALS patient.
 
Loan Closet: I've mentioned this before, but it's such a benefit for ALS patients. As the disease progresses, there are many mechanical devices that ALS patients need that are not covered by Medicare or Insurance. The costs of these can be incredible. Until Patrick got his power wheelchair, we borrowed a take-apart scooter from the closet that on the market runs about $3,000. We paid nothing...
 
Recently, in support group there was a caregiver that lived in Chico and needed a power wheel chair loaner until her husband's chair came in. The association offered, not only to lend her a chair, but to deliver it to her in Chico.
 
Grants: Insurance covers some power chair items and not others, weird, huh. One of the features it doesn't cover is the ability to move vertically. This allows for much easier transfers from chair to bed or chair to walker. However, it's not considered medically necessary - a term that irritates the crap out of me. The association provided a grant to cover the cost of this feature for us, the cost was around $2,500. I can tell you Patrick uses this feature every time he gets up from the chair - it's a tremendous asset.
 
Another grant available for low-income families is a grant to cover some respite costs to provide home health care providers. This allows the caregiver to have a well-deserved occasional break from their role as caregiver.
 
Staff: There are two patient coordinators, Nancy Wakefield and Nancy Ferguson, at the association. They are invaluable resources for caregivers, patients and family. They visit patients, assess their needs and assist patients throughout the ALS journey. Remember that connection, the association staff, works hard to make patients and their families stay connected to the outside world and have resources available. Nancy and Nancy also run the support groups that I've mentioned many times and are a great source of strength.
 
Patrick and I are fortunate that we have wonderful family, great friends and a community that often drop by dinners, sends cards and hangs out with us. However this is not the case for some ALS patients. Sometimes relationships are strained, the patient does not have a spouse/partner to care for them or they're just not connected to their local community. These can be very sad cases because ALS will isolate the individual even more. Often the association helps fill this void.

So rest easy, your money is going to good hands!! Here is a link to our Team Timmons ALS Walk Page, if you'd like to make a donation or join the team! The money goes to support the Sacramento ALS Association.

http://websac.alsa.org/goto/TeamTimmons

So in the spirit of ice bucket challenges... here are a few by our family!

Anthony Carrabello

Christian Carrabello

Cheryl Timmons
(if you look at the grandsons, they look like vultures just waiting to strike, I honestly thought I'd wind up in one of those ice bucket challenges gone wrong clips...)

Denise and Mike Tedeschi

And my personal favorite, Sean Timmons.

To everyone who did the ice bucket challenge, donated money or looked ALS up on the web to find out "what it is," a huge thanks. All the best to you and yours!

Support, Loss and Life

Patrick and I continue to make the journey each month to the ALS support group in downtown Sacramento. The group provides us with a variety of things; information, understanding and above all a group of fellow travelers on a horrible journey. At any given time, there are 30,000 people living with ALS in America - it's a small exclusive club. It's one of the many services provided by the ALS Association of Sacramento - to whom we are grateful.

When we first starting going to the group there was a woman who came to express her thanks for the support her father had received during his ALS journey. She said her father called it "the greatest club, he never wanted to join." At the time I didn't fully appreciate the comment, but I do now. These fellow travelers have become friends, and comrades. We are an interesting hodge podge of folks from various walks of life - different ages, lifestyles and beliefs. All thrown together because of a nasty disease. The Association provides a lead staff person to each group; patients and caregivers - on my side is Nancy Ferguson and on Patrick's is Nancy Wakefield - affectionately known as the "two Nancys." Both of these ladies have tremendous compassion and their thoughtful consideration during support group does not go unnoticed.

The sad news is that we lost two of our fellow travelers over the past month. These two couples were "regulars" we shared in their journeys for as long as Patrick and I have attended the group. Leanne was a tenacious fighter for ALS patient rights, she traveled to D.C. to promote the compassionate care act (an act that allows ALS patients greater access to medications) and she participated in a number of ALS studies, all the while combating the disease herself.

Tam was faced with bulbar onset of the disease, this means that her initial symptoms started in the bulbar region (head and torso), generally with bulbar onset the prognosis is not very good. With breathing, eating and speaking initially affected, life expectancy is short. Tam fought these odds and lived much longer than the average bulbar onset patient. She excelled at using technology to continue to live her life normally and encouraged other ALS patients to make choices to lengthen their lives.

I'm still recovering from a tremendous sense of loss of these two women. They were blessed in that both had supportive husbands that cared for them during this journey. At yesterday's support group, their spouses told stories of their lives and shared their feelings on love, life and loss. It was for me, a beautiful tribute to these ladies (who coincidentally died a day apart) I will always remember their strength, fighting spirits and support over the past year.

My hope is that you'll never attend an ALS support group, and the statistics are in your favor. But, if you find yourself in need, it's good to know the group is there. I think you'll find it is a tremendously non-judgmental group, passing information, sharing concerns and distributing empathy to their fellow ALS travelers.

To Tam and Ron, Leanne and Bob, thanks for being part of our journey. Your strength will live in our memories!

I am reminded to live each day to the fullest, enjoy the sunset, and find the joy in the moment. We all have times of anger, frustration and guilt - all I can say is, spend a moment there, but don't make them your existence - life is too short.

Part II - How's Patrick Doing? #5

The last "How's Patrick Doing" was in January (where does the time go) and over these past six months there has been a decline. I notice changes most when it is necessary to adjust our routine. That's the most significant time for me. For friends and family there is often a period of time between seeing Patrick so the changes likely appear more dramatic.

I think there are other changes that can't really be seen, changes Patrick feels (and sometimes comments on) these are more in the way he feels internally or small changes. In some ways I'm very good at noticing small changes and with others I'm completely unaware - I guess it just depends on what we're looking at.

As I've always said, this blog is written from the perspective of a caregiver and not an ALS patient. I am a daily observer, but I don't walk in his shoes. I will say that Patrick reads all the blogs before publishing so he does edit (both grammatically and for content) He does add his own "two cents" on occasion so hopefully, my descriptions are fairly accurate. So, here is how Patrick is doing now...

Follow-up to the "Hospital Job"
We are about three weeks passed Patrick coming out of the hospital and I'm happy to report that he is recovering. He hasn't fully gotten his stamina back but he's moved from sleeping in until noon to getting up about 10:30am. This is a more consistent pattern from before the drug reaction.

We notified all his doctors of the sulfa reaction to make sure we don't have this experience again. Dr. Fujikawa, Patrick's primary doctor, says that often subsequent reactions are worse than the first. So, we are making sure that everyone is informed.

Wheelchairs, Vans and Beds
In May, Patrick's power wheel chair was delivered. These power chairs are quite a bit more involved and expensive than the scooters you see about. He spent a considerable amount of time with Brian, at Premier Medical Supply, selecting the seat cushion, "joystick" control and type of wheel maneuvering. Which was time well spent - to all you ALS patients out there I highly recommend that you take a "test drive" before committing to a certain type of chair. Initially, he was going with the "standard" fixtures but after the test drive and considering all the options - Patrick changed many of the features and is quite pleased with the final product. With ALS you spend many hours a day in a power chair so it's important that you are comfortable. There is no returning a $20,000 power wheelchair.

The new chair allows him to turn almost on a dime, the seat moves to allow for ease of transfer and it can go up to six miles per hour. Oh, and it's a lovely shade of blue - yeah, that was my recommendation. For now he still uses his walker in the house, but he is slower than the prior post and walking is becoming more difficult.

The chair has the ability to lay almost horizontal. Patrick puts it back to slide himself back in the chair. He said initially that it was a little disconcerting but he seems to be used to it now.

For Patrick to travel in the wheelchair, we bought a wheelchair accessible van. It's a Buick Terraza (never heard of these before), we purchased it used from Destination's Mobility in Sacramento. We are very pleased with the purchase and Steve from Destination's Mobility was easy to work with - even bringing the van from South Sacramento to Roseville twice to spare us the travel.

Caitlin and I are becoming experts at buckling the chair down in the van - Patrick calls us his "pit crew." There are automatic type devices but they are considerably more expensive, and we are managing fine.

On a side note - if you have a handicap placard, when you park use the "regular" handicap spots first and the "van accessible" spots second (they are clearly marked). A handicapped person with a wheelchair van is limited on where they can park and it can be challenging. One of my greatest pet peeves (and yes, I've used some choice words on occasion) are people that park in handicapped spots but either have no placard or are obviously not handicapped.... UGH.

In addition to the new wheelchair, we've invested in a new adjustable bed. The bed allows for Patrick to be moved into a sitting position for ease of transition. It's also pretty comfortable to sleep on so we both enjoy it.

Hands, Eating and Personal Hygiene
As I've said in the past blogs, Patrick's symptoms started in his hands so this is where his greatest challenges lie. At this point, he can't control some of his fingers and others are limited. This impacts many of his regular activities; we use our hands for so many things - itching, eating, bathing, drinking etc. In my opinion, this is where I've seen the greatest change over the past six months. We adjust as much as we can - learning from other ALS patients or simply trying out various ideas. He's been using modified silverware for months, but has lost much of the ability to feed himself and requires quite a bit of help. We use straws for everything - this truly is one of man's greatest inventions.

Showering is our latest joint endeavor - there is a funny post from another ALS patient - who says "when did my personal hygiene become a spectator sport." - sad, funny and true. This is not just because of his hand issues but also due to the physical energy that goes into showering along with the ability to stand in the shower (without falling). It was just getting to be too much. After each shower he was taking a half hour nap and had a few close calls with falling - not good, so we changed the process.  Remember, constant change, constant loss - the story of ALS.

Bathrooms
We are working with Hal, an ADA Contractor, recommended to us by Susan and Cliff Catlett (fellow ALS Journeyers). Hal is going to remodel our bathroom; this includes enlarging our shower and removing the "lip" that you step over to get in. This will allow for greater room in the shower and the ability to get a chair that rolls in instead of Patrick stepping over the lip (which is scary to watch).

The bathroom will be retiled and to make things easier we are enlarging the commode door for easier access with Patrick's power chair. The process will take about a month; with the typical dust, noise and loss of bathroom use. The bathroom use is a difficult one, we will likely be renting a hotel room for a couple nights so that we have a shower for Patrick to use. The tub/shower type which is in our second bathroom is just not usable for Patrick at this point.

I'm not looking forward to the month of construction, but it will be worth it when all is said and done. The Catlett's were very pleased with their bathroom remodel so I'm anxious for it to be completed.

The other consideration during this remodel is changing out the flooring in our bedroom as well as bathroom. As the ALS progression continues, it will be necessary to use a "Hoyer Lift" to get Patrick to and from the bed and chair. Everything I've heard from other patients is that it is almost impossible to roll the lift on carpeted flooring. So we are looking at a durable vinyl or tile that would extend throughout the bathroom/bedroom. As one of our support group folks is always saying "you have to stay ahead of the game."  We hope this is a long way off, but recognize that we should make the change during the construction period to avoid having to do it twice.

Voice Changes
Probably the latest symptom that Patrick has developed is the change in his voice. I'm not sure I can totally explain the changes that are occurring but I'll do it from my perspective and then try to describe it from his perspective.

Firstly, he sounds a bit different, his voice doesn't project as well and is more nasally. Sometimes it's more pronounced than others - during the late afternoon and when he's tired or stressed it is more significant. ALS patients are more symptomatic when stressed or tired - hence his voice is noticeably different during these periods. Secondly, his voice projection is not as strong. So, if he's trying to speak to Caitlin on the other couch (this is when I notice) she can't always hear him.

Thirdly, he seems a bit slower to speak - it's subtle so I'm not sure others would notice but we spend a lot of time together so I do. Patrick says he's telling his voice to speak, but there is a delay between the thought command and speech. This is a common ALS symptom according to Bob, the RN caseworker at the ALS Clinic. I can't really imagine it. We walk, talk, itch etc. without really thinking about it. With ALS these functions require more thought process and reaction time is often slower.

Our next clinic visit is in August and I suspect this will be our first visit with the speech therapist. There are a variety of mechanical devices to help with voice issues - I'm grateful we live in this technology age. It wasn't many years ago that when you lost your voice you would simply lose your ability to communicate but that's no longer the case. Today there are text-to-speech devices that allow a person to communicate using eye gaze technology.

Day by Day
These are very hard changes to watch and consider. We know the journey, and where it ultimately leads and watching his decline is difficult. We take each day as it comes and try to "stay ahead of the game" and still enjoy the moments that we have.

My hope and prayers are for a day without ALS! In October, the next Walk to Defeat ALS will be held in Sacramento, so we hope you'll join us in walking to find a cure! Here is a link to Team Timmons - come out, we'd love to see you!

How's Patrick Doing, #4, Drug Reactions and Hospitals

It's been almost six months since I did an update on Patrick's progression. There is always a sense of sadness for me with these posts, because I look at the prior "How's Patrick Doing" and consider what has changed. It's my own FRS (Functional Rating Score) and unless I completely bury my head in the sand I must admit that there has been a decline.

Interestingly I'm going to start with a health issue that is not ALS related, but resulted in Patrick being in the hospital for the past week. This will be a two parter - the first part is about Patrick's current health events and the second, will chronicle his ALS progression since January.

Drug Reactions
Patrick developed a urinary tract infection about two weeks ago. The infection came on quick and the doctor prescribed Bactrim which is typical for these types of infections. The prescription worked well for the first couple of days, the symptoms associated with the infection declined and he felt better. But the third day into the medication he developed a very high fever, headache, chills - just to name a few ailments. Frankly, he was miserable. I contacted the doctor who felt it was likely the infection was just running its course, but to come into his office and have it checked out. We made an appointment for the following day and hoped he would start feeling better.

Unfortunately, the next day he felt worse. So the question comes up, do we go to the emergency room or go to the doctor's appointment? Well, I chose the latter (not sure if that was the "right" decision or not frankly) the physician's assistant didn't really know what to make of his symptoms and she said that doctors can no longer directly admit into the hospital, so we'd have to either ride it out or go to the emergency room. We opted for the emergency room, but stopped by the house to pick up some things (my experience is you spend a lot of time waiting, at the ER). However, when we got home, Patrick was barely mobile and we wound up calling 911 and the ambulance took him to the hospital - which probably got him in quicker, not really sure.

When the ambulance arrived at the house he had a fever of 104, he was completely exhausted and showing signs of dehydration. So they rushed him over to Mercy San Juan Hospital. They got him on fluids right away, but they could not determine why he was so ill. The doctor told us immediately that he would be admitted and they were considering the possibility that he was having an appendicitis.

Patrick spent six days at Mercy San Juan while the symptoms ran their course; he went from fevers, to chills, to a head to toe rash, to sore throat and breathing difficulties. If you read "Dr. Google" you'll see the list of symptoms for extreme reactions to Sulfa drugs, Patrick got them all! As I write this he is still covered over most of his body with a horrible rash. He is a little slower than before but starting to bounce back. Gratefully his sense of humor and calm demeanor never left him.

He couldn't recall ever taking a sulfa based antibiotic, in the past he had been on penicillin derived drugs so this was his first (AND LAST) time.

ALS and Illness
A severe drug reaction is awful for anyone but for someone with ALS it causes a multitude of problems. There is a level of tiredness that all ALS patient's have, the body is always working, so they are constantly burning calories. Most ALS patients I know, take naps during the day due to their exhaustion level. We all know how awful we feel when we're sick and exhausted. Now add ALS to the equation and you understand how utterly zapped Patrick felt. This is still challenging, and as I write this, he sleeps.

His mobility issues were dramatically impacted, he went from walking with a walker to barely able to stand. Getting to and from the bathroom became tremendous battles. It's amazing how far the bathroom looks when you are having difficulty moving. The weakness in his hands and arms was very significant. He was barely able to lift his arms, which when your whole body itches, is a tremendous source of frustration. The movement in his legs has returned but his hands and arms are still recovering.

Of course, the scariest symptom was the effect on breathing. We all have to breath and with ALS the diaphragm is already compromised so adding an illness that is weakening your breathing can make things life threatening quickly. Fortunately, at this point Patrick has not developed the breathing problems associated with ALS so although it was scary it wasn't too severe. We both ponder what the outcome would have been had his breathing already been comprised (I think I'll just be grateful that wasn't the case and not dwell on it too much).

Hospitals, Nurses and Staff
Mercy San Juan Hospital is an interesting place. It's an old hospital that was renovated with a new section attached. The layout is kind of funky, with only one entrance in the new section where you have to work your way through a maze to find the right bank of elevators to the old section, which is where Patrick's room was. I knew Patrick had been there too long when I no longer made the wrong turns and found a quicker exit to the parking garage. The first night we were there I set off an alarm by opening an emergency door - yeah, I high tailed it out of the area and played dumb... don't worry, no one was hurt by me being lost and wandering around the building. 

The staff at Mercy San Juan were extremely nice (minus one night nurse that Patrick called Nurse Ratchett). It's interesting that even in a hospital environment I found myself having to explain to staff about ALS. It is a rare disease and frankly ALS patients don't wind up in the hospital all that much - there is no treatment so it's only when they suffer a fall or have serious breathing issues that they head to the ER. It's a little disconcerting that I seemed to know more about the disease than the medical professionals. At one point a nurse kept trying to hand Patrick items and I had to tell her "he can't take that from you." - She was very understanding after, but in that moment it seemed a little strange to me.

I was worried when I wasn't there that the call button would move under the covers and he couldn't reach it. I wound up feeding it through his sleeve to keep it near his hand. I think Patrick was the one that relaxed me a bit, he said, "Really what is the worst that could happen when you're not here - heck I'm in a hospital!" Overall, truly the staff was amazing, thoughtful, funny and really smart when it came to moving him around. I learned quite a bit from just watching them.

Shared Hospital Rooms
Patrick had the misfortune of being placed in a shared hospital room initially. Those of you who haven't had the experience of a shared hospital room - basically, you're separated by a curtain so you hear and witness everything happening to your roommate, as well as he witnesses all of your activities (private and otherwise). The first night, his roommate kept the television on 24 hours and because he had limited hearing, it was on loud. The nurses were kind enough to get Patrick a pair of earplugs.

The second day Patrick got a new roommate, a gentleman (I use that term loosely) that after hearing his rantings, swearing and harassment of the staff, desperately wanted pain medications that he ran out of at home. He was angry, very angry at everything and everyone. Patrick and I listened to him for the better part of a day, he ranted when people were in the room and when they left the room. He required oxygen and had his wife sneak him outside to have a cigarette. That was one of the biggest disagreements with hospital staff, apparently "you can blow up the whole hospital doing that." The head nurse at one point came down and told him to stop harassing the staff.

The "gentleman's" story unveiled before us, he was in the final stages of COPD and was given about six months to live. The doctors, nurses and social workers all encouraged him to be put on hospice care. Apparently, hospice has more liberal rules regarding pain medication whereas doctors are limited to prescribe only so many narcotics to a person in a month (if you think about it, it makes sense.) The interesting piece is that after all of this, the "gentleman" and his wife left the hospital refusing hospice. The reason stated was that his wife didn't want people in their home and he didn't want to not be taken to the ER. How people make their decisions are odd to me, but the doctor said "I'd like to see you somewhere other than the hospital, but I think I'll be seeing you again here." I suspect he's right.

Anyway, this experience made me think - Firstly, you have six months to live, how do you want to live it? Does dying give you the right to treat everyone with hate and anger? Secondly, I looked at my husband who is 25 years younger than this "gentleman" and has a right to feel "ripped off" and there he was his usual calm self - chatting with the nurses, bragging about his daughter earning the Girl Scout Gold Award and looking forward to heading home. Truly we all have choices...

Part 2 to come... "How is Patrick Doing? (recent illness aside)