Newly diagnosed with ALS, 55, female and afraid

[Cathie45]

Hello---My name is Cathie and I am from Boston. After over a year of tests and doctor appointments I was diagnosed. I now am getting care at the ALS clinic at Mass General Hospital. I am walking with crutches and use a walker at home. I have stairs into my condo building and I am afraid I will need to sell my home soon before I cannot get it and out at all. I can get up the 4 stairs but it is getting more difficult. I am single and live alone. I am still working thanks to friends that drive me to work. Currently my stomach and core area bother me the most. My stomach is extended and it is hard to bend up and down. I recently started an antidepressant after initially hesitating. I was crying a few times a day but I think the meds are starting to work. I want to work as long as I can and I am trying to get some financial affairs in order. I am just to tell people outside my tight group of friends and coworkers. I have an elderly mother that I have not told yet, she is currently in rehab
for a broken ankle. Because I grew up with arthritis she thinks that is the problem. I am not sure what I am looking for here, some advice would be great. Cathie

 

[lgelb]

Very sorry to hear your dx, Cathie. Welcome.

You are wise to think about selling the condo since you are already having difficulty walking, and I would put that near the top of the list since it will take a while. There was a recent thread on accessibility issues when considering a new home, that you might want to look at. Since bending is difficult, in your situation, a wheelchair is pretty much the next step to avoid a fall so I would talk about that at clinic. Hopefully, you can have a new home, near transit perhaps, for the sake of both you and any future caregivers and other visitors like your mom, and a power chair around the same time. At that point, you may want to think about bringing in help.

I wouldn't delay telling your mom, hard though it will be. Knowing you knew and didn't tell her would be worse than hearing it during rehab.

Best,
Laurie

 

[Nikki J]

Hi sorry to welcome you here. There are several of us from Boston on the forum who go to MGH.

Laurie is right. The sooner you move the better and easier it will be. I need to move too. If you find a good location let me know!! Finding safe affordable accessible housing on a T line has so far been impossible for me.

We here on the forum will be here to support you so ask questions or chat whenever you want!

 

[KimT]

Hi Cathie,
First, I'm sorry. Second, MG is the best hospital for someone with ALS and Boston has lots of resources. I do know it is very expensive up there. I don't know how the housing market is but selling your place is a priority. I would get your team to write an Rx for your power chair now. In Daytona, we don't have mass transit so I have to buy a van.
I was living alone, too. When it got to the point that I needed assistance, a friend and I went in for a large ground floor condo together. So far I only have help 4 hours a week, mainly for light cleaning, cooking, and doing my laundry.
You'll need to figure out your finances first and it seems like there are so many things to do.
This forum has been a godsend to me. I've learned things here that my doctors haven't told me and it has saved me hours and hours of time researching various things.
Please ask questions and you will get answers. Also, the search here is full of just about any subject you need information on.

 

[KateEmerson]

Hi Cathie, I am so sorry to hear about your diagnosis. My husband and I are in the Boston area also and he is a patient of the MGH ALS clinic. I know your to do list must feel pretty overwhelming but getting MGH going on your power wheelchair is important as the process can take a while. We didn't find this forum for over 2 1/2 years after diagnosis and the advice and knowledge here would have saved us so much time, struggles, mistakes, and feelings of aloneness.

 

[Lkaibel]

I am sorry to hear about your diagnosis. Being single and working with this has to be a huge challenge. I would agree seeing the condo would be a good first priority and looking into a power chair given your current progression. Sounds like Kim found some very creative ways as a single person to get a housemate and get some help and has good advice.

 

[swalker]

I am so sorry to welcome you here, but welcome nonetheless.

I planned to continue working long after diagnosis, but realized within a few months that my efforts to continue working were becoming increasingly impractical and were accelerating progression. So, I stopped work and went on disability. That was a difficult decision, as I loved my job and the people I worked with. I had planned to never retire!

As others have, I encourage you to immediately start the process of figuring out what you will do when you lose your ability to climb stairs. A harsh reality of this disease is that you will use a wheelchair, it is just a matter of when. Using a wheelchair before you absolutely have to will likely reduce your incidence of falling (each fall can speed up progression), preserve your muscles for more important activities (for me, it is independent toileting), and save your energy throughout the day so you can live more of life.

You may lose your ability to climb stairs rather suddenly, so taking the steps now to accommodate wheelchair use will leave you in a better position when that time arrives.

Note that there are alternatives to moving. You can install a ramp or even a wheelchair lift. This, along with other modification to your home, may be sufficient to allow you to continue living in your current residence. However, if your current residence cannot be modified appropriately, then starting to look for a new place now is important.

Know you are among friends here.

Steve

 

[Jlynn]

Cathie, I'm so sorry about your diagnosis. My brother is single and lives alone as well (for now) but I am lucky enough to live nearby so that I can help him. Do you have any family near you to help you out? It all feels so overwhelming and scary at first and I won't say it goes away but you somehow find a new "normal". This is a really good place to get some much needed information and at times doing some much needed venting. It has been a life saver for me. MGH is a great hospital. That's a good place to start. Keep your chin up

 

[Cathie45]

Hello---thank you for your response---how often do you go to the doctor?

 

[soonerwife]

Cathie, we go to the mda clinic every three months

 

[frankb]

Sorry for your diagnosis, Cathie, and sorry the medicos took a year in coming up with your diagnosis. Unfortunately, it seems that happens to our ALS collegues more times than not. Can't add much to the excellent advice from forum members that you have received other than to avail yourself to the services of your local ALS Chapter. They can be exceptionally helpful for the newly diagnosed (and as we progress, as well). The social worker, at both the ALS Assn and the ALS clinic, can be very helpful. Also, don't be a stranger here at the forum. No question is too small or too big. You will find some Forum members have more ALS expertise and knowledge than many doctors. Remember that you are among friends here and specially that you are not alone.

 

[Lisa55]

Hi Cathie. Your story sounds like mine. Although I actually started the moving process before I was even diagnosed. I'm so glad to be out of the condo with all those stairs. I encourage you to start looking. They're building a lot of new buildings in Boston with elevators--you don't have to move into a luxury high-rise! I found a fair number of units that met my accessibility requirements. Don't wait until it's an emergency. And if you've been diagnosed with ALS, you're eligible to take the RIDE everywhere. That way you can go where you need even if you can't find a friend to drive you. It's door-to-door and they help with packages and the doors.

 

[Nikki J]

Hi Lisa. Welcome! Thanks for chiming in. I am starting to think we should have a Massachusetts subforum there are getting to be quite a few of us here!

If you are ready maybe start a thread of your own so we can get to know you too

 

[Nuts]

Welcome, Cathie and Lisa. You will find a lot of friendship and support here.

Cathie, move as quickly as you can. If you are looking at condos, in addition to a one floor condo and elevator or ground floor, make sure you can get in and out of the building ok.

 

[Cathie45]

Hello and thank you for all the responses...as I work through my move I am planning on my furniture needs. I wanted to ask if a bed that is electronic and supports you sitting up is something I should consider.