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.
Sunday, July 20, 2014
Thursday, July 3, 2014
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!
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.
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.
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!
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