Status
Not open for further replies.

Jennanne

Active member
Joined
Oct 25, 2016
Messages
39
Reason
CALS
Diagnosis
12/2016
Country
US
State
New York
City
Buffalo
Hi Everybody,

My name is Jennifer and my 57 year old husband was just preliminarily diagnosed with Bulbar Onset ALS. We are completely in shock as his first symptoms (that he/we can recall) started in early June 2016 (maybe late May). He began with slurred speech, emotional lability and his legs felt heavy going up the stairs. We didn't think much of it, as work was very stressful for him during that time frame and ALS never entered our mind.

When I finally did talk him into going to his primary MD just after Labor Day we were certain he had a mini stroke or TIA. Currently, his speech has deteriorated some, but it is not terrible. He has no respiratory or swallowing difficulty. He now can barely walk up the stairs and his hands are beginning to weaken. Also, after going to our initial appointment with a neurologist in the beginning of October, both his feet went numb. This is a man who tore down an entire old wooden deck at the end of April, we are in absolute shock over the diagnosis. It feels like it has progressed so incredibly quick.

The Neurologist did a host of bloodwork and an MRI of the brain and spine. Nothing came back positive. We were then referred to a Neuromuscular MD who performed the EMG at the end of October and gave us the diagnosis on November 3rd. She is working to help us get a second opinion (which we requested) at the Cleveland Clinic (we are in Buffalo, NY).

I do not even know where to begin. We both work full time and have 2 school age girls (14 and 11) and my husband has older kids as well. Any advice on how to tell our younger ones is much appreciated (the older ones already know and have been incredibly supportive). Also, any advice from anyone who has been to the Cleveland Clinic? Thank you so much!!

Jennifer
 

friedgold1

Member
Joined
May 22, 2016
Messages
15
Reason
Loved one DX
Diagnosis
07/2016
Country
US
State
TN
City
Memphis
I'm so sorry to hear about the diagnosis. Getting a second opinion is the absolute right thing to do. You are your family are in my thoughts and I hope for the best for you.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,037
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
City
Seattle
Hi, Jennifer,

I'm very sorry that you find yourself here. I would wait for the 2nd opinion before tackling the younger girls. You may want to read the 2nd opinion sticky in preparation and make sure you bring everything needed yourself, just in case.

It does sound like fast progression, so I would proceed with the paperwork for Medicare/SSDI and his private disability policy if he has one through work, consider your home's accessibility, and take stock of your resources of all types (e.g. friends, family, money, community). Is he a vet?

Don't forget to just live and breathe, while you are working through the logistics. The moments you have as a couple and family are doubly precious now, but they do not have to be rare.

Best,
Laurie
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,564
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
OK
City
Cleveland
So sorry to hear about your husbands initial diagnosis. My husband has been diagnosed with bulbar onset as well. You have found a great resource for support. Feel free to ask questions, vent or whatever you need.
 

ckck

New member
Joined
Jan 11, 2016
Messages
9
Reason
PALS
Diagnosis
11/2014
Country
US
State
midwest
City
midwest
Jennanne,

I know the shock is real and overwhelming. I too am bulbar onset with diagnosis in November 2014. I too thought I had suffered a minor stroke and pursued that avenue, before recognizing that I my disease was different. While everyone progresses differently I concur about a second opinion. Ask questions of people here and at your clinic, and use the visit for a second opinion to learn even more about the disease affecting your husband. When medical staff make suggestions, consider them carefully. The suggestions will come well before you may think they are necessary. Sometimes it is better to be ahead of things. However, be your own advocate as your suggestions will inevitably be the most important. I am sorry for this news for you and hope people here are of help, they have been for me.

Ken
 

scaredwifetx

Forum Supporter
Very helpful member
Joined
Jul 25, 2015
Messages
1,573
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
City
Dallas
I am so sorry that you had to receive this diagnosis. We waited until our second opinion to make at decisions. It is hard waiting on it. I remember all to well. You will also have a very rough first couple of weeks dealing with the shock. Take it slow and do not overload yourself. Talking to your children will be very hard but they are at the age where the truth is very important. They will be in shock just like you but will also be very supportive.

You will want to stay in front of the progression an at the same time try to not live in the future. i will also recommend conntaact your local ALS association. They have a lot of useful pamplets for families and patients
 

Jennanne

Active member
Joined
Oct 25, 2016
Messages
39
Reason
CALS
Diagnosis
12/2016
Country
US
State
New York
City
Buffalo
Thank you all for your heartfelt responses. They have truly touched me. Our next appointment is on December 1st which is also a clinic day. As we understand we will be working through our local MDA association. Our MD did tell us at our November 3rd appt. that they can send out an OT to our home to help assess for safety. I am very worried about this, we live in 2 story house with all the bedrooms and showers on the 2nd floor.

I also am worried about my husband falling, he is so tough and strong willed and always says he is "fine". I know he is trying to protect me, that is just the way he is, he takes everything in stride. He has started Baclofen and Nuedexta which have helped immensely with the emotional lability and cramps but it is still difficult for him to climb stairs. We are still waiting on a date for the second opinion appointment.

Aside of our older children, we have also told very close family and friends who have been incredibly supportive as well and want to help in any way possible. For the time being we are staying focused on keeping life as normal as possible for the girls (who are involved in every activity under the sun). We have told people wanting to help that this would be the most beneficial to us at this point (carpools, etc.). My husband is not a military vet, but we both work in healthcare and have insurance through work. He also has long term dbl insurance through work.

Thank you again for your support! Also, I hope I can return the favor and offer support as well. My husband and I are both Respiratory Therapists, so we are all too familiar with the breathing aspect of ALS and the different equipment utilized which makes this journey even more difficult.... Aside of the shock of the initial diagnosis, it is such a helpless feeling being on the "other" side of healthcare!

Jennifer
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,286
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Sorry to welcome you.

My niece was 9 when my sister was diagnosed ( we are FALS). They worked with her school counselor and a private therapist on how to tell her which they did after the second opinion. They had told no one else though except me Will your kids pick up vibes from those in the know even if no one says anything?

Re carpooling etc if you have not already set up something online like lotsahelpinghands to keep things organized. You can add different needs ( meals dropped off can be very helpful for example). also when you tell more people and they say let me know if I can help you can have them sign up. Different people have different strengths so someone might want to do errands, others cook, others do something in the house.

Stairs are a huge issue. My sister managed with a stair lift but the difficulty of transfer coupled with torso weakness make it unworkable for many. Seriously consider whether moving is the right thing. If it is necessary the sooner the better for all. I wish I had moved when my symptoms started
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,534
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Jennifer, I'm also sorry to welcome you here---but am glad that you found us. You can come any time, day or night, and folks here really do understand what you are feeling and experiencing.

As Nikki said, stairs are a serious problem. Some people get by by turning a downstairs room into a bedroom and eventually using a commode chair rather than a toliet once their PALS can no longer walk into the powder room. Showers can become sponge baths or you can get portable showers that set up in the garage and you can use a shower chair in.

Here's the big elephant in the room: speed of progression, which no one can predict. My husband is a slow progresser and the VA helped modify the house, so gutting the master bath made sense. Some people build additions with a new master bed and accessible bath. Others don't, and because their progression is so fast they never regret not going through the expense and mess. This is just one of the gut wrenching decisions you will need to make.

Good for you for having the Long Term Care insurance. Contact them now and get the diagnoisis to them so that you can use it as soon as you wish. Way too many people wait and end up not using it up.

I feel the most for people with young children dealing with this disease. Just remember that we are here for you--speak up anytime, even if it's just to rant. It really does help

Becky
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,627
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Besides your long-term care insurance, see if the life insurance has an accelerated benefit clause. I knew a PALS who got a payout from his insurance two years before he passed away.

I'm sorry you're here. Mike will be able to talk to you about your children. He had two children when his wife was diagnosed. They learned to help with his wife's care.
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,350
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
So much good advice here I have nothing to add to it. I just wanted to say I am very sorry that you find yourself here, and for what is happening to your family. Being average or slow progression is not a blessing everyone gets, and I am sorry for the speed of your husband's progression. I will also hold out that hope for you that the second opinion finds something else. Our own case was what the Dr. called a "95% diagnosis" - he called it for ALS because though it did not meet all criteria it was highly unlikely to be anything else.

With things happening so fast, try to make a little bit of time for you and to just breath. You can help make better decisions that way.
 

Jennanne

Active member
Joined
Oct 25, 2016
Messages
39
Reason
CALS
Diagnosis
12/2016
Country
US
State
New York
City
Buffalo
Thanks so much for the excellent advice. We are still waiting for a second opinion appointment which will be at the University of Rochester. Until then, we are taking everything day by day.

I know I am probably in denial, but I cannot believe how quick he was diagnosed after only having symptoms since June. I also find the numbness in his feet puzzling (he is always better at the beginning of the day, and his feet grow more numb and weak towards the end of the day). Thank you again!
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,350
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
The diagnosis for us came just about 4 months after his very first symptom, and just six weeks after someone said "could be ALS". My husband's progression is not even thus far fast, but sometimes when you go to the best MD's they figure things out quickly too. We may be frozen solid here in beautiful Minnesota, but you can barely turn around without tripping over a great health care provider.

That being said, numbness usually seems to be a later symptom. Here is hoping that second opinion raises other possibilities.
 
Status
Not open for further replies.
Top