In Memoriam
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Joel Goldhirsh passed away in the early hours of March 16, 2024. Joel was a brave, generous, and amazing man who wanted to help others impacted by ALS even while he was fighting his own battle with the disease. Joel envisioned, supported, and helped create The Joel Goldhirsh ALS Home and Daily Living Guide.
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We will miss Joel’s kindness, insights, and wit and will work to further his mission of educating and supporting ALS caregivers. We appreciate everything Joel has done, and we will remember him always.
Karen Goldhirsh has asked that in lieu of flowers, people consider donating to either ALS United Rocky Mountain, which supported them in countless ways, or to The Joel Goldhirsh Education Fund to continue his legacy of helping caregivers and patients navigate ALS.
Karen Goldhirsh has asked that in lieu of flowers, people consider donating to either ALS United Rocky Mountain, which supported them in countless ways, or to The Joel Goldhirsh Education Fund to continue his legacy of helping caregivers and patients navigate ALS.
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Joel Goldhirsh owned a wealth management firm before he was diagnosed with ALS. As his symptoms progressed, he tried to hire professional caregivers to provide respite for his wife, but numerous caregivers quit because they weren’t prepared to care for someone living with ALS.
To improve caregiver retention and quality of care for families impacted by ALS, Joel collaborated with Your ALS Guide and ALS Hope Foundation to develop the ALS Home and Daily Living Guide, an extensive online training guide for ALS caregivers. |
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"As the person living with ALS, you have to realize that it's not all about you. Using caregivers gives family members the respite that they need."
Your ALS Guide interviewed Joel Goldhirsh in May 2022—roughly three years after his diagnosis and four years after his first symptoms. Joel passed away on March 16, 2024.
Tell us about your early symptoms and diagnosis.
In March 2018, I went in for a routine followup exam after rotator cuff surgery. I’d had some twitching in my left calf, so I casually asked my orthopedic surgeon about it. Little did I realize, after thirteen months of testing and visits to neurologists across the country, I would be diagnosed with ALS.
How has ALS affected your daily life?
What started as twitching in my left calf has progressed to the point where I have little use of my arms and hands, a raspy voice, declining vital lung capacity, and limited use of my legs. I need help getting out of bed, showering, getting dressed, brushing my teeth, and eating—all simple things that I used to take for granted. Now I can’t do them by myself. It's a pretty devastating disease.
How have professional caregivers been able to help you?
We are fortunate that we have the financial means to hire quality caregiving. We have long-term care insurance I purchased three years before my diagnosis. Then, obviously, we have to supplement what the long-term care insurance doesn't cover.
Our caregivers come in at 7:30 in the morning and leave at 9:00 at night. They help me get out of bed, go to the toilet, eat, bathe, and get dressed. Then they help throughout the day.
It relieves the burden on my wife, and that's the thing that I'm most concerned about—that she's got some respite. My wife gets to walk the dogs, spend time with friends, and have somewhat of a normal life, which I believe is really important for those you care about. I love her, so I'm glad that she's got those opportunities, and we're fortunate that she does.
Our caregivers come in at 7:30 in the morning and leave at 9:00 at night. They help me get out of bed, go to the toilet, eat, bathe, and get dressed. Then they help throughout the day.
It relieves the burden on my wife, and that's the thing that I'm most concerned about—that she's got some respite. My wife gets to walk the dogs, spend time with friends, and have somewhat of a normal life, which I believe is really important for those you care about. I love her, so I'm glad that she's got those opportunities, and we're fortunate that she does.
Why did you want to create a guide for ALS caregivers?
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The characteristics of the whole disease are such that you have absolutely no idea what you're getting yourself into, no idea what's coming next, no idea the resources that you need today or those you might need in the future. I found that a lot of the caregivers who've passed through these doors really don't have the expertise or experience just because the disease doesn't affect that many people.
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I wanted to be involved in something that would make the life of someone else with ALS easier. I believe that making it easier is providing meaningful information to caregivers—whether that's a spouse, children, friends, or a paid caregiver. Providing meaningful information that makes their job easier and makes them more sensitive and understanding as to what the patient is going through is a win for everybody.
What does a caregiver need to know about caring for ALS?
There are different types of caregiving. The one that's most prevalent is companion care, which is when professional caregivers will sit with you, play cards, watch TV with you, etc. It's a far cry from what a caregiver's responsibilities are when they're working with someone who has ALS. There's a lot of strength that is needed. We've had caregivers who were unable to get me out of a lift chair, even though the chair does most of the lifting.
The type of caregiver you need is one that's going to be actively involved throughout the day, whether it's scratching an itch or getting me a glass of water.
You have to have somebody who is in it because they love what they do and they love providing the kind of care that's necessary for someone with ALS. We've had a number of caregivers pass through the doors and unfortunately a lot of them either don't have the training or don't have the desire or the interest to provide the level of care that's necessary for someone who has ALS.
The type of caregiver you need is one that's going to be actively involved throughout the day, whether it's scratching an itch or getting me a glass of water.
You have to have somebody who is in it because they love what they do and they love providing the kind of care that's necessary for someone with ALS. We've had a number of caregivers pass through the doors and unfortunately a lot of them either don't have the training or don't have the desire or the interest to provide the level of care that's necessary for someone who has ALS.
Tell us more about the value of respite for the family caregiver.
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I really think that as the person with ALS, you have to realize that it's not all about you. There are other people that are affected by the disease, especially a spouse or a partner, and even other family members that might live in the area. Using caregivers gives the family members the respite that they need.
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Looking out for their well-being is just as important as thinking about your own. My wife likes to play mahjong. She likes to be in her book club. She likes to visit with friends. I strongly encourage that, whenever possible, to take advantage of those opportunities because I think that she's just going to be happier. Her life's going to be more fulfilled, and she's going to be a better partner for me. I think, to the extent that I can do whatever I can to make it easier for her, that's what I'm going to do.
How has equipment improved your quality of life?
It's incredibly important to anticipate what your future needs might be. That really means thinking about the progression of the disease and how it's going to impact things like mobility. We put a lift in the garage that I didn't need yet because I could walk up the stairs. When I couldn't walk up the stairs, I didn't have to worry because that lift was there already.
The same thing with the power wheelchair. We had a power wheelchair way before we needed it, because I was concerned about the lag time between ordering it and getting it. We were able to get that in so when I did need it, it was there. I strongly recommend that anybody who's dealing with this disease do what they can to anticipate what might be down the road and preemptively take care of it today. You'll be so much better off in the future.
For the things that you hold near and dear to you—mobility, interacting with other people, talking, communicating, emailing—get the systems in place that are going to enable you to continue to do the things that you really love to do.
The same thing with the power wheelchair. We had a power wheelchair way before we needed it, because I was concerned about the lag time between ordering it and getting it. We were able to get that in so when I did need it, it was there. I strongly recommend that anybody who's dealing with this disease do what they can to anticipate what might be down the road and preemptively take care of it today. You'll be so much better off in the future.
For the things that you hold near and dear to you—mobility, interacting with other people, talking, communicating, emailing—get the systems in place that are going to enable you to continue to do the things that you really love to do.
What has been your mental approach to living with ALS?
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My view on this disease is that I control the controllables. ALS has kind of ravaged my body but I refuse to let it ravage my mind.
One of the ways that I can protect myself from it affecting my mind so much, at least for me, is reaching out to friends and knowing that resources are available to help me and my wife, so that from a family standpoint, we're as close as we could possibly be to a normal life and the normal life we had prior to the diagnosis. |
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Having a good mental attitude about the disease is tough. There are nights when I'm laying in bed and I think of the way things were. I think that maybe I'm just going to wake up and this nightmare is going to be just that—just a nightmare. I try to look at it in the vein of I've got a beautiful wife, I've got a caring wife, I've got friends, I've got family. I try to look at the world that way and be thankful for the years that I've had and the years I have remaining.
Are you able to get out of the house often?
One of the things that makes me feel good when I get up in the morning is the fact that I can get out of the house. I have a power wheelchair. I have caregivers that help me get from point A to point B. I have a wheelchair accessible van. I can get around anywhere we need to go in the van. I'm a pain in the butt to my wife because she wants to go to the grocery store and do a real quick in and out, and I just want to go down every aisle, and look at everything, and enjoy the experience.
We put a ramp in the back of the house. We have a door in the master bedroom that leads right out to the patio in the backyard, so it gives me access. We have a dining area out there, so I can eat with friends. I can sit in front of the fireplace. I can just sit out and read a book in the sun. Having that ability to access the things that I would have normally have had access to makes me feel better.
We put a ramp in the back of the house. We have a door in the master bedroom that leads right out to the patio in the backyard, so it gives me access. We have a dining area out there, so I can eat with friends. I can sit in front of the fireplace. I can just sit out and read a book in the sun. Having that ability to access the things that I would have normally have had access to makes me feel better.
When did you decide to stop driving?
One day I was driving back from a restaurant and stopped at a four-way stop sign. I was making a left turn. I started turning the wheel and then I couldn't lift my hand up to turn the wheel anymore. We went right up to the edge of the curb.
Luckily, I wasn't going very fast, but that’s when I realized that it was time for me to give up driving. I did it knowing full-well that it was more important that my wife was safe, and that I was safe than to have the independence that comes with driving.
When you can't react and be safe, it's time to let someone else do it for you. You should give up the keys when you could be risking your life, those you care about, and those that are on the road.
One of the most difficult things when you decide to give up your keys is learning how to be a good passenger in the car. It took me quite a long time to get used to my spouse's driving, but there's medication for that, too.
Luckily, I wasn't going very fast, but that’s when I realized that it was time for me to give up driving. I did it knowing full-well that it was more important that my wife was safe, and that I was safe than to have the independence that comes with driving.
When you can't react and be safe, it's time to let someone else do it for you. You should give up the keys when you could be risking your life, those you care about, and those that are on the road.
One of the most difficult things when you decide to give up your keys is learning how to be a good passenger in the car. It took me quite a long time to get used to my spouse's driving, but there's medication for that, too.
What does your daily self-care routine look like?
One of the things that you realize when you have this disease is that everything takes ten times as long. My routine in the morning is to get up, go to the bathroom, eat, take my pills, do my stretching and exercises, shower, and get dressed. By that time, it's 11:30 or 12:00. I don't schedule anything that's going to interfere with that in the morning. My mornings are blocked out for my care and for my exercise, and that's how I approach just about every single day.
I encourage people living with ALS to get a routine and a schedule that fits your personality and your care needs, and just stick to it. The more you stick to it, the better you're going to feel.
I encourage people living with ALS to get a routine and a schedule that fits your personality and your care needs, and just stick to it. The more you stick to it, the better you're going to feel.
Tell us more about your exercise and stretching.
One of the most liberating things for me during the day is the ability to be able to move about. Once I've done my exercises, my body feels so much more fluid.
In addition to the caregivers, we have a physical therapist come in twice a week and an occupational therapist come in once a week. They help facilitate my exercises so that I feel really good during the day. I can tell when I don't and wish I had, so I encourage everyone to always do their exercises.
In the early phases, I was doing more weight-bearing exercises, whereas today, I'm doing more isometric exercises. You need to be careful not to do too much because the muscles don't replace themselves, so it's this constant balance. Today, it's more stretching, range of motion, and isometric exercises.
If you're not using your muscles, they're going to either atrophy or you're not going to be able to get effective range of motion. Range of motion exercises facilitate more range of motion and less atrophy. You want to keep what you've got. You don't want to lose what you've got before it has to be lost. Then, you want to keep the range of motion so you can do the kind of things that you would like to do, whether that be with the help of others or on your own.
In addition to the caregivers, we have a physical therapist come in twice a week and an occupational therapist come in once a week. They help facilitate my exercises so that I feel really good during the day. I can tell when I don't and wish I had, so I encourage everyone to always do their exercises.
In the early phases, I was doing more weight-bearing exercises, whereas today, I'm doing more isometric exercises. You need to be careful not to do too much because the muscles don't replace themselves, so it's this constant balance. Today, it's more stretching, range of motion, and isometric exercises.
If you're not using your muscles, they're going to either atrophy or you're not going to be able to get effective range of motion. Range of motion exercises facilitate more range of motion and less atrophy. You want to keep what you've got. You don't want to lose what you've got before it has to be lost. Then, you want to keep the range of motion so you can do the kind of things that you would like to do, whether that be with the help of others or on your own.
What other thoughts would you like to share?
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The psychology of learning how to live with the disease is really, really important.
If you need a therapist, get a therapist. There's nothing wrong with it. It's a horrific disease, and if it's going to help you and your relationship with partner, spouse, or friends, it’s money well spent, time well spent. |
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It's easy to understand that someone with this disease will have little patience and have a lot of frustration. I admit that I do. I have certain expectations of myself and my ability to be able to do A, B, or C, and those abilities are either diminished or they're gone entirely, and so it's very, very, very frustrating. Using a mouse, typing a word on the computer, whereas it would take me five strokes, takes me five minutes today.
I think that my decision not to be in support groups and somewhat similar groups is the fact that I looked at the way that I'm going to react to those and how it's going to affect my outlook and my behavior. For me, it was important not to participate because I didn't want to be constantly reminded of what might happen, or what will happen by looking at other people in the support group. It's not a right decision for everyone. It's just the right decision for me.
I think that someone with the disease just needs to really be reflective of the kind of things that they need to support them. What kind of support structure do they need?
My support structure is the friends that I've had for 36 years, and to spend time with them, and to be with them, and listen to them talk about their families and what's going on in their life. Those are the things that make me feel good every day.
I think that my decision not to be in support groups and somewhat similar groups is the fact that I looked at the way that I'm going to react to those and how it's going to affect my outlook and my behavior. For me, it was important not to participate because I didn't want to be constantly reminded of what might happen, or what will happen by looking at other people in the support group. It's not a right decision for everyone. It's just the right decision for me.
I think that someone with the disease just needs to really be reflective of the kind of things that they need to support them. What kind of support structure do they need?
My support structure is the friends that I've had for 36 years, and to spend time with them, and to be with them, and listen to them talk about their families and what's going on in their life. Those are the things that make me feel good every day.
