diagnosis

[siuska]

Sis,
check out Pals sites here...i think it is time you talk to someone who has ALS...find out about the course and help for this disease...talk to Al...you can also talk to MDA rep...

[sisgldnhr]

find out what ALS research studies are going on there...i think i gave you the numbers...also ask about lithium for Don...you could call them...i think physical disability (emotional level) is harder on a man.
Maybe Don could talk about it with another PALS???
Maybe introduce him to this website???
S

Siuska,

I did save those #'s that you gave me for the als research studies. I brought up the lithium studies to Dr. Nash. He told Don its up to him but he recommended not doing it. That there just isn't enough information out about the study yet. He also told us that he has made the same recommendation to other patients of his not to use the lithium but they chose to do it anyway. He said the choice is ours. Don said no to the lithium.

I think you're right about the physical disability for him is right on target. He felt awful yesterday, never got out of bed, when I'd go in to check on him I could barely hear him when he spoke. I think he was both mentally and physcially exhausted from the OSU appt. the day before.

I have talked to Don about this site and he is not interested nor does he want anything to do with the computer. I told him that I could set up a bed table with the laptop and he could practice typing (he never learned how) but he said, no thanks. He told me that he realizes at some point this computer may be his only way to communicate but he doesn't want it. Maybe at some point he may change his mind.

I know for me, this website has helped me understand just what is happening to my husband and the support that I've received has been great. I thank God that I found this forum.

Sis

[CindyM]

We are glad you found us, too, Sis. I am sorry to hear about Don's weakness and all, though. :( cindy

[siuska]

i am so sorry Sis, for your and Don's transition/ordeal...do you have a good support group to help you? Have you checked out the caregiver sites here? to tell you the truth, i am kinda worried about YOU!

[sisgldnhr]

i am so sorry Sis, for your and Don's transition/ordeal...do you have a good support group to help you? Have you checked out the caregiver sites here? to tell you the truth, i am kinda worried about YOU!

Siuska,

How thoughtful of you! I have not had the time to check out the support groups yet. Between running my business and taking care of Don and our household I just haven't gotten to it.

Don't worry about me Siuska, I will do what I can, when I can and if I can't I will ask for help. My husband has 7 siblings, 4 of them live here. I have 3 siblings and my mother that has also volunteered to help. So I/we should be okay. My mother brings Don high calorie goodies at least once a week and one of my sisters delivers dinner once a week for Don & I. When the time comes I'm sure that I will have make out some kind of schedule for everyone so that I have someone with Don at all times.

Thanks for your kindness...........Sis

[sharonca]

A suggestion is to buy the book "Share the Care". The books comes from the experience a group of people had when they shared the care of a person with cancer. My friends feel it will keep them from having to reinvent the wheel. They can use that model for splitting up the duties needed to take care of me. We have not had our first meeting yet, so far all I need is help with getting to apppointments.

Sharonca

[sisgldnhr]

Sharon,

I ordered the 'Share the Care' book. Thank you for the suggestion.

Sis

[CindyM]

Yes- thanks for the suggestion. I am going to order the book, as well. We could probably use some tips right now, but for a "happy" reason. We have a new baby due any day and his mother (my daughter) fell and broke her leg. Baby is fine but when he gets here his Mom will need lots of extra hands.

I like the idea of scheduling help. Thanks for sharing!

[sisgldnhr]

Cindy,

How exciting about the new baby!! You and your daughter are going to have your hands full thats for sure. Let us know when the baby gets here :-)

Sis

[crystalkk]

Cindy- sorry to here about your daughters broken leg, but look luck with the new baby.

Sis- it's great that you have a good support group and everyone is willing to help, it means alot with what you and your family are going through.

[sisgldnhr]

Just wanted to give you an update about Don's Bi-pap. First, OSU sent the info to the wrong medical supplier (they sent it to central ohio, not nw ohio). I called OSU on Friday to find out where the machine was. That is when they discovered the mistake. So I got a phone call yesterday, March 25th from OSU saying that the order for the machine was faxed to NW Ohio Medical Equipment. I called them this morning only to be told that our insurance company is reviewing Don's med records to see if 'they' think if he needs the machine since its 700.00 a month. I was so ticked!!! I couldn't see straight!!! I closed my store and went directly to the owner of the company that my husband works for. He got to hear everything that I had to say along with me crying (damn it! I didn't want to cry!) but...... the machine is being delivered tomorrow. If tears made it happen then so be it. But how ridiculious that I even had to go thru this today!!
Don is not sleeping very well....so that means I'm not sleeping either. I can't wait for this machine. I pray that it helps him breath so that he/we can get some rest.
I called Hospice on Monday to see about getting a bed for him. Before we can get any help from them we have to make an appt. to speak with one of their counselors first. She told me that they have had only one ALS patient in their history and his was lower motor neuron. She had never dealt with anyone with a feeding tube. Oh boy....... I'm going to get in touch with the VA next, to see if we can get a bed from them.

Frustrated here in NW Ohio...........Sis

[Peg B]

Hi Sis,

What a heartbreak. I am so sorry you are having to go through this in this way. Insurance can be heartless. But you are a very gutsy woman. Your husband is so lucky to have you.

I know that does not help much because your heart breaks for him. I have you both in my prayers. God Bless you. Sincerely, Peg

[siuska]

i'm sorry Sis, you and Don are going through this...i am glad the BiPap is coming!!! Good idea to go to the boss and make it happen!!...i have a feeling you might have to do that to get the bed...but, hope not!!!
S

[sisgldnhr]

Well the good news.... that Bipap is being delivered this morning by a pulmunary nurse and I got a bed!!! I called the MDA in Columbus yesterday (yes, I was on a roll :-) and a bed will be delivered next week from their loan closet in Toledo, OH. Thank goodness for the MDA!

Sis

[CindyM]

I am glad things have started to turn around for you and Don, sis. It si kind of a pain that you have to go to so many different places to get all you need. Keep at it, though. Don needs you. Thank goodness he has a fighter at his side!

[sisgldnhr]

I am so worried about Don's weight....he just keeps dropping a pound at a time. He is having such a hard time eatting now. I asked my sister-in-law if he could survive on Ensure and she tells me he can. He and I talked yesterday, I asked if has made a decision about the feeding tube and he tells me that he thinks that he is going to decline getting it.
This decision feels like lead in the bottom of my stomach. But what ever he chooses I have to support it.

This is so hard...........sis

[sharonca]

I've been spending time going over in my head whether I will do a feeding tube, vent - you all know the drill. I'm still undecided on the vent but I have decided I will do a feeding tube. What clinched it for me is the fact that medications can be crushed and put in the feeding tube and make that situation much easier. If you cannot swallow you can't get meds. A matter of quality of life not extending life. Just my opinion. And I do respect everyone's decision.

Sharonca

[Peg B]

Dear Sis,

This is so hard. I am sorry your husband is in this position, but I am so sorry you are too in this position, and you have no real control over it. I know you know it is his decision, but the impact on you must be devastating. Standing aside and watching your loved one go through this has got to be one on the lonliest feelings in the world. Please know the love of many is reaching out for you both.

I send prayers for you and wish you peace. God Bless you both. Sincerely, Peg

[sisgldnhr]

Please know the love of many is reaching out for you both.
Peg

Thanks so much Peg, what a lovely thought :-)

I just came back from 4 days in AZ on business. It was hard for me to leave but I knew that Don was in good hands. My kids and mother pitched in while I was gone.

Don had an appt. today with a Dr. representing Social Security. How ironic that it was the first Neuro that we went to and he sent us on to Toledo as he didn't know what was wrong with Don. I took the OSU report with us. He barely even looked at Don. Who knows what his report will say. I pray that he signs off and they let Don's SSDI go thru.

Sis

[Peg B]

HI Sis,

I hope your business trip went well.

Let us know about the Dr. decision. With the DX ALS, the Dr, should just sign off. Best Wishes, Peg

p.s. I go Thursday for a new EMG/NCS, they are going to see if I have gotten "objectively" worse and if so decide it is ALS and not MMN. I will let you know.

[sisgldnhr]

HI Sis,

I go Thursday for a new EMG/NCS, they are going to see if I have gotten "objectively" worse and if so decide it is ALS and not MMN. I will let you know.

Peg,

Please let me know.... what a stressful time it must be for you. Know that you are in my prayers.

Sis

[CindyM]

to Peg and Sis- you are both in my htoughts today...Cindy

[sisgldnhr]

I have made the support collar for Don's head/neck and nothing seems to be helping his awful neck pain. His muscles in his neck and shoulders are so atrophied that there is nothing there to support his neck/head. He takes Advil, I massage his shoulders/neck, he's liking the Bengay but it doesn't last. Any suggestions?? Should he have some kind of head/neck brace?? His pain is 24/7. I have noticed the strain its putting on neck and shoulders, it looks swollen to me.

Sis

[MtPockets]

Thought you might want to take a look at what I use to help support my head. It is flexible and can be bent around the neck so that it is tight. Sort of like a neck brace, but does not rub the skin like a regular brace does.

You can see it at the link below and mine is the one in the middle called "Neck and Shoulder Massager with Heat". I do not use the massage feature as it shakes my brain too much. But the heat feature is good.

http://www.homedics.com/homedics/browse/subcategory.jsp?categoryId=140

[sisgldnhr]

Thanks Capt. Al :-) I ordered him one today.


Sis

[hopingforthebest]

Dear Sis

I give my husband Ensure Plus, recommended by ALS clinic nutitionist. I put two (350 calories each) in a blender with a banana and total calories are about 800. He has put on 3.5 lbs past month with the shakes.

You are both in my prayers.

Patty

[sisgldnhr]

Thanks Patty,

I'll mix him one of those up tomorrow! He has also been drinking Carnation Instant Breakfast drinks (375 calories each). I've bought all the different kinds of supplemental drinks but if your nutritionist recommends the Ensure Plus then I'll stock up on that. He can't tell one from the other as far as taste goes.

Sis

[als???]

I have several symptoms of als. Unfortunately, I have gone to the doctors too soon, because shortly afterwards, I've developed new symptoms. I've had the muscle pain and cramps for 7 months, twitching for two months, and after seeing a neurologist, the throat aches and cramps started. My throat has felt swollen for over a month now. How long should I wait before going back and asking for a reevaluation? I have had the EMG, MRIs, etc. and all have come back negative.

[als???]

Sorry to jump in, but am new to this forum. I have a question on what I should do next.


I have symptoms of als. I've had muscle pain for 7 months that seems to cycle monthly.
The twitching started 2 months ago. Then, just after seeing a Neurologist, who said I didn't have als, the throat pain started. It feels swollen and has lasted for over a month. My breathing is fine, eating and drinking is not affected, but when idle, it feels swollen. At what point should I go back in for a reevaluation? I've already have gone through the MRIs, EMGs, etc. and they all came back negative.

[sisgldnhr]

Sorry to jump in, but am new to this forum. I have a question on what I should do next.


I have symptoms of als. I've had muscle pain for 7 months that seems to cycle monthly.
The twitching started 2 months ago. Then, just after seeing a Neurologist, who said I didn't have als, the throat pain started. It feels swollen and has lasted for over a month. My breathing is fine, eating and drinking is not affected, but when idle, it feels swollen. At what point should I go back in for a reevaluation? I've already have gone through the MRIs, EMGs, etc. and they all came back negative.


Hi ALS????,

If I were you......I'd read thru different posts on this board. There are many people here that have been thru what you are going thru. I am pretty new to this board also...so I'm not much help. I am my husbands caregiver. There are lots of loving, caring folks on this site that may be able to offer you more suggestions.

Wishing you good health.......Sis

[sisgldnhr]

We went to Clinic yesterday....our second trip to OSU. They gave Don hs final EMG. told us that they didn't need to do anymore EMG's....the disease is progressing just as he thought it would). OSU had not done their own EMG so Dr. Nash had ordered this final one.
I don't know what Don & I expected but it just seemed so impersonal at this appointment.
Over this past 3 month period Don's lost another 7 lbs. his lung function went from 62% to 56% (the 25% that I had mentioned months ago had to do with his smoking not his total lung function...that was good news yesterday!). It leaves me wondering what they're not telling us. Is this progession the norm?? Dr. Nash mentioned the feeding tube again.....said that lung function under 50% feeding tubes are not recommended. Don didn't tell the Dr. that he doesn't want it (as he had told me) so maybe he is still considering it.
..... my husband!!:oops: after Dr. Nash asked us if we had any questions....Don asked him ...are you ready!......."Is Viagra right for me???" OMG!! (he sounded just like the commercial!) Dr. Nash said he hasn't ever written a prescription for that but he didn't see a problem. Just that if it works over 4 hours get to the ER. I could have just crawled under my chair.......

Clinic days are so long that I swear I'm packing a cooler to take with us next time. We were sooo hungry by the time we got through seeing all the doctors that we both felt sick to our stomachs. Which I'm sure was intensified by stress.

Dr. Nash also wrote a script for a metal braced neck collar. He recommended that we go to different suppliers to check out what they have to offer. The fit has to be just right or he won't wear it.

Hugs to all.........Sis

[gbrown]

Sis:
It doesn't sound like the clinic that you are going to is very coordinated. We go to the clinic at Wake Forest University Baptist Medical Center in Winston Salem, NC. We've never been there over 4 hours including our first visit. Now our visits usually last about 2 hours. They always have a room set up with snacks and coffee and juice. If we are there between 11:00am and 2:00pm they always feed us lunch in their cafeteria. At our last 2 visits the only appts. that were mandatory for me were with the respiratory therapist and the neuro doctor. They let me decide if I needed to see anyone else. Last visit I talked with the therapist that has the help appliances and the speech therapist. Together they are getting me a compurterized voice machine. I don't need it yet, but will in the not too distant future.
Hope your visits get better.
Gordon

[sisgldnhr]

Sis:
It doesn't sound like the clinic that you are going to is very coordinated. We've never been there over 4 hours including our first visit. Now our visits usually last about 2 hours. They always have a room set up with snacks and coffee and juice. If we are there between 11:00am and 2:00pm they always feed us lunch in their cafeteria.
Gordon

Wow Gordon!

How thoughtful of your clinic. I asked about vending machines and they sent me on a wild goose chase. I never found it either! The only thing that was offered was coffee.There was no way we were adding acid to our empty stomaches.
We arrived at 8:00 a.m. and got out of there at 2:30. I will let them know next time that we need a lunch break.

Sis

[Peg B]

Hi Sis,

Sorry to hear about the unpleasant visit and lack of support. A cooler is a good idea I think. Congrats on Don wanting Viagra. Compliment to you. :-D

I was thinking you might get some help from the social work department. They may have some places for you to go to get the best price and also give you some support. My understanding from this forum and what we have been told is that social work support is part of the ALS team. Best Wishes, Peg

[sisgldnhr]

Congrats on Don wanting Viagra. Peg

Peg,

Maybe I'm wrong but I don't think his wanting Viagra is about me. I am thinking that it has to do with his masculinity. He has had alot of things taken away from him by this disease. I think that sex is one of the things that he wants to hold on to as long as he possibly can. I think it scares him to let that go.

Since having a total hysterectomy, sex is not on the top of my list of things do. But spending time with my husband is....be it intimate or not. :-)

I must say though that we have had some good laughs talking about the use of Viagra.

Just my humble opinion........Sis

[Peg B]

Hi Sis,

Are you able to get any social work help or any from the ALS association?

There are some real good jokes about Viagra, but we don't want Al to get after us in this public forum.:-D Best Wishes, Peg

[CindyM]

Actually, there are some practical tips on this site for how to manage, so to speak, when one partner has weak limbs. :-D Nobody ever accused any of us of being shy! LOL.

[Al]

We actually do have a forum here for jookes. Post Things to Cheer People Up. As long as the language doesn't get rouch. Remember the George Carlin guidelines about the 7 words you can't say on radio or TV and it should be OK.
AL.