I'm a new member of this unfortunate, exclusive club

[Fusia]

I was diagnosed as probable ALS by Dr. Martinez-Thompson at Mayo about two months ago -- I had first symptom about 14 month ago. I had suspected this DX for a while, so while it wasn't a shock, it's still devastating. Initial symptoms were in my left hand and arm (grip, weakness, muscle wasting/atrophy), and then in right hand and arm. I'm probably progressing at a fairly average rate. While my legs are still doing well, I have good balance, and my voice/breathing/swallowing are fine, my core muscles seem to be weakening. I'm 65, living alone with my 2 Labrador retrievers in a single level condo which should work well for me. I have a great network of friends who are eager to help when needed.

I know this will be a tough slog. (Actually another tough slog, as my husband very recently died after living 6 years with Alzheimer's.) My intention is to spend time with family and friends and travel while I still can.

I would like this community's thoughts and advice on ALS Centers... I live in Montana -- there is only one ALS Center (Billings), but I believe it is very small and may be limited in resources. So, I'm thinking of traveling to a larger city on an occasional basis. I called the center in Salt Lake City, but it will take months to get an appointment once I'm "approved". I'm also thinking about the center at Mayo in Rochester since that's where I was diagnosed -- I put a call into them yesterday and expect to hear back within several days. Another option would be Seattle. I would appreciate any input or opinions.

I'm very impressed with the supportive environment in these forums and I know I will learn a lot from all who are blazing the path ahead of me. While I'm not happy that any of us are here, I'm thankful that we're all here to help each other through.

 

[KarenNWendyn]

Sorry to extend a sad welcome, Fusia. This is a very helpful forum with lots of kind, supportive folk.

Depending on the sequence and rate of your disease progression, you can do fine with helpful friends and family for a while, but eventually you’ll need to hire help. Do you have family nearby? Since your onset was in your upper extremities, you might do well with Alexa- enabled technology, robotic vacuums, and the like.

Do think longer term in terms of any remodeling needed for when you can no longer walk. It’s good to plan ahead.

We have other PALS here who live alone and can perhaps weigh in.

In terms of the clinic... I think proximity is important, especially living in a region where winter weather conditions can be challenging. Once your diagnosis is established, what’s important is the team of ancillary professionals (e.g. PT, OT, etc.) you’ll work with.

 

[Jimi]

Sorry to hear about your new interest in the forum, and welcome, Fusia. For me, the biggest benefit has been to be as self reliant as you possibly can . When/if you need breathing equipment for instance, take the time to learn how to operate and adjust things. If you rely solely on the doctor or respiratory therapist for everything , you will get by, but reading up on your equipment will allow you to take things to a much more comfortable level . I spend a lot of time reading and researching ways to remain independent with what ever I can . I try to look at things as an opportunity to learn . Keeps my mind strong . About 2 years after dx I stopped going to the als clinic . Was too much work to get there . Other than a power wheelchair, bipap/breathing machines (I bought my own for backup ) and a hoyer lift, it has been up to me to figure out how to do the regular activities of daily life . What seemed overwhelming at first felt much more in control when I start to learn more about each problem and figure it out step by step. Just my opinion , everyone is different . Just remember to never underestimate your ability to adapt !

 

[Nikki J]

Agree with above. If after you are seen locally you feel you want input from a bigger clinic ( and you may not feel that way) you can be seen at two places. I have a friend doing that now. Another things to ask about are remote visits ( televisits) they are becoming more common now. Some things you have to do in person but after diagnosis a lot of the visits are about helping you manage symptoms. As one ALS specialist said about this if you tell me you are having trouble with your door key it doesn’t matter what my hand exam show what is important is helping you problem solve

very sorry you have to join us

 

[lgelb]

I am sorry that you find yourself here, Fusia. Agree with the above -- anyone in Billings probably knows how to write a script for a hospital bed, etc. Where the rubber hits the road is your power wheelchair rx, which does benefit from some ALS experience, from some combination of a PT, OT or ATP at the equipment firm that orders the chair.

You have time to look into whether that exists in Billings or not (I see four ATPs listed who do wheelchairs there, so hopefully it does) -- it is not how many ALS pts have lived in Billings but the past experience of the aforementioned people. Medical equipment people and therapists move around. It is much easier to order settings and accessories that you need the first time, esp. with traditional Medicare.

So that is the main tangible thing for which it could be worth it to schlep somewhere further if needed, but if the chair needs service/repair, you still want a relationship with a nearby (i.e. you are in their service area) DME in your network. So I would start there.

The less tangible thing that it might be worth it to travel for would be the radiologist who places your feeding tube, if you opt for one. That requires an interventional radiologist with that type of expertise, and that may or may not exist in Billings per se. Again, something to research in advance.

Apart from those, I would visit the clinic in Billings and see what vibe you get, when you ask questions about everything that's not wheelchairs and feeding tubes. Then if you like what you hear, you can ask those questions.

As regular readers know, I advocate (and assist with) titrating your own BiPAP settings, and any doc can write a script for one.

There is no clinic or DME in Seattle that I would for one moment consider driving from Billings to see.

We stopped going to the ALS clinic in the middle of the game, once we had equipment, and others here have often done likewise. But find a good nearby PCP, if you don't have one there, who can write for the rest of what you need, throughout.

Best,
Laurie

 

[grounded]

Lots of good advice already given.

I think a smaller ALS center can be as good or better than a large one. I was diagnosed & go to clinic at a large university medical center. So far, I've gotten AFOs & wheelchair prescribed from them. At clinic every 6 months, they track my progression. A smaller ALS center or even a PCP could easily have done the same.

In my case, the only difference is the opportunity to participate in research & clinical trials - probably better at large centers. I've donated spinal fluid, a skin punch & lots of blood for their research projects. But I haven't qualified for any clinical trials done there.

In summary, a smaller ALS center should provide all the care you need. If the larger centers are doing clinical trials or research that you want to participate in, then they would be a good option.

 

[KarenNWendyn]

Agree with grounded. I live in a community of around 100,000, and I’ve been able to find everything I need ALS-wise. I also order a lot on Amazon.

In my community is a decent hospital with an interventional radiology department, a wound clinic, an infusion center, a lab. We also have NuMotion, a mobility van sales and service center, several prosthetics offices, and an active ALS clinic complete with ancillary providers, and a support group. If I wanted to participate in clinical trials, I’d have to travel. Otherwise, everything I need is local.

 

[sassy]

We are fortunate to be within an hour of Mass General so my husband is a patient there and also a patient at a smaller center with a local neurologist. Since my husband's progression is slow, I feel Mass General is much more aggressive in their treatment and knowledge of atypical als.

 

[KimT]

Hi, welcome, and I'm glad you found us.

After dx I decided I wanted to put together a local team to take care of my needs. I still left the door open at Mayo in Jacksonville but that's a two-hour drive. My local neurologist specializes in pain management but he has had two other ALS patients and was so willing to learn. He is the one who prescribed the power wheelchair. My local pulmonary doctor prescribed the BiPAP. I actually wrote both letters and they just signed them. I didn't have trouble getting either one.

I have a RT who comes to my condo when I want him. I haven't seen him since June. He calls each month and asks me if I need him to stop by. I order the supplies over the phone and am required to see him once a year. I ended up buying my own breathing test equipment so I know all my numbers and can control the time I test myself. I do see an ALS specialist about once every three or four months but it's not my diagnosing doctor at Mayo. My primary care doctor, pain management neurologist, and all the other doctors I might need are all within a 20-minute drive from me. I would go to Mayo when it comes time for a feeding tube but, other than that, I feel comfortable with the doctors I have here in town.

I also lived alone when I was diagnosed and the year following the diagnosis. I had just finished remodeling my retirement condo when I was diagnosed. After having some contractors look at it, I decided it wasn't large enough so a friend and I both sold our places and moved to the beach. Neither of us have family so it worked out pretty good. I immediately remodeled the whole thing to make it accessible and got that out of the way. There is room for caregivers when the time comes. The best thing is that I made some new friends and found a new church that I love. My housemate and I were both college professors but he was a lifeguard before that so he appreciates being back on the beach.

With this disease, staying ahead of the game really is key to a better quality of life.

 

[Fusia]

Sorry to extend a sad welcome, Fusia. This is a very helpful forum with lots of kind, supportive folk.

Depending on the sequence and rate of your disease progression, you can do fine with helpful friends and family for a while, but eventually you’ll need to hire help. Do you have family nearby? Since your onset was in your upper extremities, you might do well with Alexa- enabled technology, robotic vacuums, and the like.

Do think longer term in terms of any remodeling needed for when you can no longer walk. It’s good to plan ahead.

We have other PALS here who live alone and can perhaps weigh in.

In terms of the clinic... I think proximity is important, especially living in a region where winter weather conditions can be challenging. Once your diagnosis is established, what’s important is the team of ancillary professionals (e.g. PT, OT, etc.) you’ll work with.

Thanks, Karen, for your advice. I do expect to hire help, since I don't have family nearby. In fact, I already have a person coming in to help with cooking, projects, etc -- she was a care provider for my husband while he was still at home, and she will be able to step up her time as my needs increase. I will also hire other help as needed.

I did make an appointment with the Billings ALS clinic -- they were very responsive, and able to schedule me (pending review of records) for the next clinic day in December. I was pretty impressed with the interaction compared to the larger clinics I had reached out to, and they seem to have the resources needed.

Fusia

 

[Fusia]

Sorry to hear about your new interest in the forum, and welcome, Fusia. For me, the biggest benefit has been to be as self reliant as you possibly can . When/if you need breathing equipment for instance, take the time to learn how to operate and adjust things. If you rely solely on the doctor or respiratory therapist for everything , you will get by, but reading up on your equipment will allow you to take things to a much more comfortable level . I spend a lot of time reading and researching ways to remain independent with what ever I can . I try to look at things as an opportunity to learn . Keeps my mind strong . About 2 years after dx I stopped going to the als clinic . Was too much work to get there . Other than a power wheelchair, bipap/breathing machines (I bought my own for backup ) and a hoyer lift, it has been up to me to figure out how to do the regular activities of daily life . What seemed overwhelming at first felt much more in control when I start to learn more about each problem and figure it out step by step. Just my opinion , everyone is different . Just remember to never underestimate your ability to adapt !

Thanks, Jimi,
I'm an engineer at heart, so I do like to know how things work, research solutions, and learn -- in fact, I'm one of the few people who tend to read user manuals. While I've always been pretty good at adapting to new situations, the level of adapting needed to cope with ALS just seems a bit overwhelming to me right now, and the payoff is hard to see. But, I know I need to deal with each issue one at a time, instead of looking at the whole.

Fusia

 

[Fusia]

Agree with above. If after you are seen locally you feel you want input from a bigger clinic ( and you may not feel that way) you can be seen at two places. I have a friend doing that now. Another things to ask about are remote visits ( televisits) they are becoming more common now. Some things you have to do in person but after diagnosis a lot of the visits are about helping you manage symptoms. As one ALS specialist said about this if you tell me you are having trouble with your door key it doesn’t matter what my hand exam show what is important is helping you problem solve

very sorry you have to join us

Thanks, Nikki,
I do have a visit scheduled at the Billings clinic, but good advice that I could be seen at two places if I feel I need other support they cannot provide. I will also ask about remote visits -- Montana is a very rural state, so that might be a capability they. have.

Fusia

 

[KimT]

Fusia,

One thing that helped me keep my energy was ordering prepared meals from Healthy Chef. The food is good, it's organic, free range and wild fish. You can build a menu each week and it arrives at your door each Friday. No cooking. Just remove the vacuum sealed top and pop in microwave for a couple of minutes. Decent portion sizes. I also get prepared frozen shakes from Daily Harvest and they have lots of delicious, healthy ingredients. You just fill the container up with the liquid of choice (milk, almond milk, etc) and throw it it your blender. It makes a creamy shake. You can add extra calories in the form of coconut oil, avocado, etc. if you need to increase your caloric intake. I rarely cook now and always have healthy food in the house. I wish they had this service back when I was working, although cooking was one of my hobbies.

 

[Fusia]

I am sorry that you find yourself here, Fusia. Agree with the above -- anyone in Billings probably knows how to write a script for a hospital bed, etc. Where the rubber hits the road is your power wheelchair rx, which does benefit from some ALS experience, from some combination of a PT, OT or ATP at the equipment firm that orders the chair.

You have time to look into whether that exists in Billings or not (I see four ATPs listed who do wheelchairs there, so hopefully it does) -- it is not how many ALS pts have lived in Billings but the past experience of the aforementioned people. Medical equipment people and therapists move around. It is much easier to order settings and accessories that you need the first time, esp. with traditional Medicare.

So that is the main tangible thing for which it could be worth it to schlep somewhere further if needed, but if the chair needs service/repair, you still want a relationship with a nearby (i.e. you are in their service area) DME in your network. So I would start there.

The less tangible thing that it might be worth it to travel for would be the radiologist who places your feeding tube, if you opt for one. That requires an interventional radiologist with that type of expertise, and that may or may not exist in Billings per se. Again, something to research in advance.

Apart from those, I would visit the clinic in Billings and see what vibe you get, when you ask questions about everything that's not wheelchairs and feeding tubes. Then if you like what you hear, you can ask those questions.

As regular readers know, I advocate (and assist with) titrating your own BiPAP settings, and any doc can write a script for one.

There is no clinic or DME in Seattle that I would for one moment consider driving from Billings to see.

We stopped going to the ALS clinic in the middle of the game, once we had equipment, and others here have often done likewise. But find a good nearby PCP, if you don't have one there, who can write for the rest of what you need, throughout.

Best,
Laurie

Thanks, Laurie,
I will get a sense of the Billings clinic's experience in general, when I visit the in early Dec, and then can ask about wheelchairs and feeding tubes. And, I'm glad to know you're a resource for BiPAP settings. I do have a PCP here in Bozeman who I like (she was my husband's doctor during his Alzheimer's battle). In addition to being a good medical doctor, she is caring and is very experienced with palliative care and end of life issues, which is important to me.

Fusia

 

[Fusia]

Lots of good advice already given.

I think a smaller ALS center can be as good or better than a large one. I was diagnosed & go to clinic at a large university medical center. So far, I've gotten AFOs & wheelchair prescribed from them. At clinic every 6 months, they track my progression. A smaller ALS center or even a PCP could easily have done the same.

In my case, the only difference is the opportunity to participate in research & clinical trials - probably better at large centers. I've donated spinal fluid, a skin punch & lots of blood for their research projects. But I haven't qualified for any clinical trials done there.

In summary, a smaller ALS center should provide all the care you need. If the larger centers are doing clinical trials or research that you want to participate in, then they would be a good option.

Thanks, grounded,
You seem to confirm what others have indicated that a smaller clinic should be able to provide the resources I need ( outside of clinical trial participation). Makes me comfortable with my decision to make a visit to the Billings clinic.

Fusia