Status
Not open for further replies.

Grhbr

Member
Joined
Jun 24, 2018
Messages
11
Reason
PALS
Country
US
State
FL
City
Sarasota
I was diagnosed by a neurologist about 5 weeks ago after two EMGs and MRIs confirmed his suspicions. I'm not sure how long I've had this as I was in treatment for Lymphoma in 2014 and never fully recovered from Chemotherapy. Now that I have done some research, I think I was passing off some symptoms of ALS as late side effects of Chemo.
I started having problems with my voice over a year and a half ago and since the start of this year it has progressed to breathing and swallowing difficulties and terrible fatigue. I'm still walking with a cane and walker and eating and breathing on my own but I feel myself slipping a little more every week
I'm a 59 year old female living alone with no possibility of a caregiver.
With cancer, everything was hurry up, with ALS, I'm waiting for everything. I can't get in to the ALS clinic near me to see a nurse practitioner until another month, then wait again for a first available to have the functionality tests, probably another month they advised. They will not book both now.
I'm in Tidwell hospice's transition program for terminal patients that don't know how much time they have. A volunteer comes every week and shes been great! I also attended one ALS support group at the hospital which was scary.
I'm due to sign a DNR and living will this week as I dont want any feeding tubes or invasive breathing machines.
I'm torn between waiting around for the clinic and taking the time to travel while I still can.
I could use any advice you can give about how to cope with what's coming.
Thanks for reading!
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,832
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am sorry to welcome you here but look forward to getting to know you.

What do you mean functionality tests? Pulmonary tests? Or the assessments that happen at clinic by PT , OT etc? I know it is hard to have to wait and I hope if you have pressing issues they can be addressed on your first visit

In general don’t wait and start doing what you want asap. Is the problem you want to take a long trip and so would miss clinic appointments? Can you do something on your list though?

Again sorry you are finding yourself here but happy you found us
 
Last edited:

Grhbr

Member
Joined
Jun 24, 2018
Messages
11
Reason
PALS
Country
US
State
FL
City
Sarasota
Thanks so much for your response. Yes, those are the tests I mean. I'm still new to this. I'm hoping when they look at my breathing and swallowing I'll get a better idea of how much time I have. I'm not hoping for ways to prolong it. After going through cancer treatment on my own, I'm done fighting. I don't want to start a trip to visit people ( I have a few offers ) as I'm afraid I'll be too much to handle if I wait until after the clinic time here based on my current rate of decline.
I'm also originally from Boston so have considered going back as one of the visits and see if the Clinic at Mass genera will see me sooner. I have limited resources after cancer as Ive been on disability for 3 years and lost my home to foreclosure. On a good note, at least I'm not trying to apply for that!
Of course I say I'm ready to give up but who knows what I'll do in the end, I'm still sad and in denial. Even if there's no help for me, I wouldn't mind being in trial if it would further research. My neurologist at Moffitt cancer center in Tampa suggested there may be studies looking at the links between certain cancers and ALS. Ive also had Melanoma
Thanks again!
 

whereswaldo

Active member
Joined
Mar 3, 2018
Messages
83
Reason
PALS
Diagnosis
06/2013
Country
US
State
Ca
City
Northern
Welcome and I'm sorry you have a need to be here.

Your first appointment sounds like my first clinic appt. They really just confirmed my diagnosis with a EMG and a couple of breathing tests. The rest of my appt have been normal clinic appts. Without knowing the speed of your progression, I would suggest going to the first appt and then travel after you figure out how often your visits will be. Mine started at 4 months and now I'm at every 3 months.

When you say "invasive breathing machines", do you mean bipap or more? Things you will need to sort out when you sign your advanced directives. If there is somewhere you want to travel to, I would suggest doing so early on before you lose the ability to do so.

Welcome and good luck.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
12,706
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Very sorry to hear about your pre-existing issues and diagnosis, Sarasota. We will support you however we can.

I certainly wouldn't wait for clinic testing, since you already have a diagnosis, to get going on the travel you want to do. There is nothing they are going to say/do that should affect that, as long as you are careful to avoid falls and overextending yourself, except you want to get orders started for whatever equipment you need. And not knowing whether your travels would entail flying, don't be afraid to make use of wheelchairs at airports, etc.

If it is hard to breathe, you will want to be evaluated for BiPAP ASAP (the pulmonary tests). Note that at flight altitudes, it is harder to breathe so don't cut that too close. A wheelchair order is also obviously near at hand. You don't have to get those from the "closest" clinic, though, as long as wherever you go is in network with your plan. So maybe you could even weave clinic in with your travel.

I do have to question your statement about a caregiver. I'm not sure what scenario you envision, but as you lose mobility, even without a feeding tube, you will require someone to provide the mobility for care that you will lack. This could be something to consider as you complete the paperwork. Whom will make decisions if you can't? Do or will you qualify for Medicaid in your state? That might entail home health/facility care benefits. Have you filed for Medicare?

Best,
Laurie
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
871
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
BW
City
Stuttgart
I'm very sorry to hear about your horrendous health past and the chapter opening up. It must be a real shock and hard to cope with the built up fatigue. You've come to a good place here. A bunch of warm and knowledable folks who helped me tremendously to armour myself with ALS facts. There's so much information, it can be overwhelming. You can browse around or use the search function to get a better understanding of the consequences of feeding tubes and different views on breathing. And you're very welcome to just ask any question that is pressing right now.

I hope you don't lose hope. Our KimT is an amazing lady and can surely share sound advise on how to be your own CALS.
Every decision you make is yours and you shouldn't be bullied into decisions by financial hardship. I know this poses a huge problem. People here will help you find all the available resources.
Making a DNR and living will is very important. It's also important to know that it's still possible to change your mind in certain matters. Humans are built to adapt and PALS often have much better quality of life than outsiders anticipate.
If you don't like to choke on food at some point a feeding tube is an incredibly good solution. Good for hydration and meds also. If you don't want to use it anymore that again will be your decision alone. There's no need to suffer more than necessary for as long as your want to live and no need to be hijacked by technology if you want to go. Stay informed and in charge. It's your life and we will support you with whatever route you're on.

My advice is not to search for a cure or a miracle. Accepting will help you deal with this beast and I hope you'll find help to lead a self-controlled life.
Travelling is great, do it, in between appointments, long stretches, whatever works. My boyfriend and I had to have our butts kicked by our bosses to do a huge west-coast trip NOW and not wait until things settle down (which they probably never will). It wouldn't have been possible the way we did it later on. Best decision we ever made, one month after diagnosis we were in Oregon collecting invaluable memories, meeting wonderful new people and of course we talked with all of them about what's going on. I think the change of scenery helped to ignore and process the reality of a life turned on it's head at the same time.

Be very welcome here!
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,502
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Hi Sarasota,

First, I'm so sorry about your relentless health conditions during the past few years. I'm glad you found us and know the people here are such good resources and, really, just good people.

I've been to University of South Florida and I'm guessing that's where you will do your clinic visits. Who diagnosed you? Was it a neuromuscular specialist? I only ask because your first post didn't mention and I wanted to recommend University of South Florida since it is so close. I had no trouble getting in because my first diagnosing neuro called them. I was in a week later. I think Hopkins took a couple of weeks and I made the appointment myself.

Please don't think of BiPap as a life extending measure. It will be a quality of life measure.

I have a close friend who has ALS and she declined a feeding tube but has a much better quality of life with a Trilogy. She is now on hospice but managed to attend a couple of support meetings during the past six months.

I also don't have family. No husband or kids. My best friend and I sold our homes and bought a condo together and he will take care of my dog when I no longer can. It's very hard without family support. I understand how you must feel.

I had planned to go to Hawaii, Boston, and Asheville in Summer 2016 but first the condo went up for sale and then I fell and badly sprained my ankle making it impossible to do much for the next six months. By that time my wheelchair evaluation was scheduled and the remodeling began. The remodeling really set me back, financially and physically. My building is made of steel and concrete and drilling out the whole bathroom revealed a foundation that was two feet thick. It seemed like it would take forever. Meanwhile, two hurricanes and two evacuations made me feel like I was in a bad dream.

If I could turn back time, I would have gone on my trips and worried about finding a condo after I got back.

I know I don't have to tell you we have a terribly broken healthcare system that really works against disabled people under 65. Even with the Affordable Care Act, I had to pay three times as much for my Medigap insurance and Florida isn't a friend of the poor or the disabled.

Please ask any questions you want. The combined knowledge of the people on this forum is second to none.

I'm uploading a document one of our moderators, Greg, prepared. There is lots of valuable info here and he updates it from time to time. Greg was one of the PALS here who made me realize we all have purpose for as long as we're here.
 

Attachments

  • ALSInfo12.pdf
    346.7 KB · Views: 599

Grhbr

Member
Joined
Jun 24, 2018
Messages
11
Reason
PALS
Country
US
State
FL
City
Sarasota
Thanks for responding, Kim. Florida is definitely not a place to be poor or sick!
An MRI showed lesions on my brain which can be a sign of lymphoma recurrence so I actually got my diagnosis at Moffitt . The neurologist, Edwin Peguero did call USF but a month was thefirst available. Thanks for the advice
 

Grhbr

Member
Joined
Jun 24, 2018
Messages
11
Reason
PALS
Country
US
State
FL
City
Sarasota
Thanks to everyone who responded. Clearly I need to do some additional research so I know what I'm talking about. So much to take in and I'm in a fragile state of mind right now.
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
871
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
BW
City
Stuttgart
Take it one step at a time and rest on the walker once in a while. ;)
You don't have to bombard your mind with everything at the same time. If you come here often to read and socialize you might notice that the perfect information you need at the time will just materialize in front of you. There's a lot of "me too!" moments.
 

Grhbr

Member
Joined
Jun 24, 2018
Messages
11
Reason
PALS
Country
US
State
FL
City
Sarasota
I apologize for not responding to everyone individually. My Neuro and oncologist thought it be a good idea to get IVig (immunoglobulin ) infusions to boost my immune system because my white cell count was low. After the 2nd infusion, I was so sick I called an ambulance and just got out of the hospital. Im home with a new portable oxygen machine as my count was ranging in the 80s.
I still feel like crap but its good to be home.
It's not that I don't want a caregiver, i just don't have anyone willing to do it. Im already on medicare and hospice has submitted the application for medicare. I believe if I qualify, that will offer home health care which I would love!
Thanks everyone who took the time to write, i really appreciate your advice
 

Grhbr

Member
Joined
Jun 24, 2018
Messages
11
Reason
PALS
Country
US
State
FL
City
Sarasota
Oops, I meant to say the application for medicaid
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,832
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am sorry you went through that. IVIG can be great if it is for things like MMN but it is not a benign drug

Do you really mean oxygen? Or bipap? Oxygen without careful monitoring and bipap is not usually good for PALS. Do you have another medical condition they are treating?

The problem with our breathing is not lack of oxygen but more the ability to exchange oxygen with carbon dioxide due to weakness of the respiratory muscles. Oxygen can exacerbate our tendency to retain carbon dioxide.
 

Grhbr

Member
Joined
Jun 24, 2018
Messages
11
Reason
PALS
Country
US
State
FL
City
Sarasota
All of the doctors at the hospital that stopped in said they had never had an ALS patient. They wouldn't let me leave without oxygen as I failed their test. Maybe that's why I have a terrible headache and nausea?
Am Im so weak. Haven't eaten much in last two days, just pudding and yogurt for taking
pills and water to try and keep hydrated. They said I has pneumonia and gave mea diaretic to get the fluid out. It really seemed like they didn't know how to handle
me. They are coming to switch out the machine tomorrow. Ill talk to them about theoptions. Thanks so much for the advice
 

Grhbr

Member
Joined
Jun 24, 2018
Messages
11
Reason
PALS
Country
US
State
FL
City
Sarasota
It's very difficult being so sick and having to do all these tasks. I also have some memory issues left over from chemo so I haven't really got it all together. What a sad sack I am!
 
Status
Not open for further replies.
Top