Newly Diagnosed Fiancé

[SupportivePartner]

My fiancé was diagnosed with ALS yesterday. It has been absolutely devastating, but we are committed to making lifestyle changes to slow the progression as much as possible. We will be seeking a second opinion as well, but are not trying to have false hope.

When my fiancé was diagnosed, the neurologist told him that the progression of the illness is "moderate." I'm wondering, does this mean that it is in a more rapid rate of progression, or does it mean it is not quite rapid, but not slow either?

 

[Nikki J]

I am very sorry to hear this.

A second opinion is something we recommend so happy you are pursuing one

Generally managing stress, getting good sleep, eating a good diet to keep weight on and activity as tolerated but not overdoing it and protecting against falls are desirable lifestyle changes.

Moderate progression would seem to indicate mid range though I am surprised the neuro made that call without having seen him several times

Again sorry you have to join us

 

[soonerwife]

So sorry to hear of your fiance's dx. You have fond a great place for support.

 

[lgelb]

Hi, SP, thanks for sticking by your PALS and we'll support both of you however we can if the 2nd opinion is confirmatory. I would disregard the "moderate" comment as it sounds more like something to say than anything else. There is no benchmark for "moderate" progression anyway.

Best,
Laurie

 

[swalker]

Sorry to have to welcome you here.

I do not pay much attention to prognostications about progression. The progression will be what it will be. Each of us is different and we will progress at whatever rate we progress.

I do believe there are things that have the potential to affect progression. In my opinion, injuries from falls appear to speed up progression, as does overdoing things and getting sick.

In my case, stopping work and going on disability seemed to slow progression down. It was a hard choice, because I loved my work. But, my job was very demanding and I think the energies I put into work caused me to overdo it on a regular basis.

I try to limit my activities so that it does not take more than half a day to recover. When it takes more than a day to recover, I know that I am doing harm to myself.

Should your fiance's diagnosis be confirmed (and I am hoping it is not), then you will need to monitor progression so that you can have appropriate equipment on hand before the need for it becomes critical. For example, it took me 4 months to get a wheelchair, which seems typical. It is a good idea to work on procuring a wheelchair long before it is absolutely needed. The same goes for other equipment.

Good luck and know that we are here to support you.

Steve

 

[Lkaibel]

I am so sorry this happened to both of you, and all of the advice above sounds good. As to progression, that is really something that can usually be seen much more post diagnosis. It was speculated in the beginning that my husband may be faster progressing, but in his ninth month post Dx, it is the opposite, it is slower than whatever "average" is suppose to be.

Get that second opinion, of course and then if that does not go your way give yourself time to take things in.

 

[scaredwifetx]

Sorry to have to be another one to welcome you here. A second opionion is always a good idea. Progression is not in the dictionary of ALS that's for sure. So far my PALs does exactly the opposite of what the doctors say. He has had progression and it normally happens when he over does it, falls or doesnt sleep well. He also had time in between the progression. We have no clue where he is in this fight but we are both learning to live each day by not counting each day.

This forum and wonderful people here have given us both, a better quality of life. You are warmly welcomed and we hope to be a great support group.

 

[SupportivePartner]

Thank you all for the feedback. I truly appreciate all of it. We will focus less on what the supposed prognosis should be and more on how he is feeling day to day. One theme I am seeing is that progression seems to be slower when one does not over do it. Do any of you have recommendations about whether or not light workouts are okay initially? My fiancé really wants to continue to be somewhat active, but I am guessing that light activity would be best. Maybe stationary cycling at a slow pace and light weights for arms? Or is that over exerting ones self?

We are scheduled for a second opinion next week. Our first neurologist that gave us a diagnosis did not really give us a care plan post diagnosis, so we are hoping for one this time around. For now, we have started to try to detoxify our diet. We're having organic foods, little to no sugar, and taking some supplements (COQ10, vitamins C, D, and E, magnesium). We will consult with doctors about this as well, but do any of you have any suggestions about diet? We will also start speech and physical therapy next week.

This has been quite an emotional roller coaster, and I'm sure I'll be back here with more questions. Thank you for all of the support. It helps to feel less alone when facing such a horrific diagnosis.

 

[Nikki J]

You ask excellent questions and will find different opinion here and elsewhere

Diet- most will agree that at the very least whatever it takes to keep weight on unless he is very obese. There is research that PALS with a bmi of 31 have slower progression. Obviously that may bring other issues but having a little cushion might not be a bad idea if it does not affect mobility. Many PALS need a lot of calories just to maintain.

Supplements are another issue and lots of take or have taken many. The ones you mention- Magnesium can help with cramps, sleep and constipation. There was a large retrospective study on E and people who had high E levels were less likely to get ALS. What it does if you have ALS was not known. It can increase bleeding rates so safety becomes even more important.

We were just talking about D. It is generally felt to be neuroprotective but a recent paper found that although PALS with higher D levels had higher frs scores at diagnosis after a year those who were taking vitamin d supplements progressed faster
Low c levels go along with higher ceruloplasmin levels which may be a good thing ( look up free copper)

Coq 10 did not show benefit in a study of PALS but it did not hurt.

Exercise - much discussed and argued. Used to be we were told range of motion gentle stretches only. The newer thoughts light to moderate aerobic exercise is good. Stationary bike is ok. Pool would be great. If it takes more than one hour to recover TOTALLY it was too much ( per my clinic). Weights are different. You can't rebuild muscle and traditionally, weight work causes little microtears that you then repair ( why you get sore). PALS can't repair. There have been PALS here who swear they do weights and are ok but I think it is risky at best. My opinion and what I was told.

 

[Lkaibel]

Exercise is an interesting topic. Our clinic did not give us as many guidelines as Nikki's. Brian did do some weight work with his Dr's blessings, but gave it up when he realized the pool exercises just felt better. He has always taken a lot of supplements, no real changes there. I have acted as a "No Falls" police and he has had two minor ones still. Very important to avoid these to the extent possible. Food, well Brian has always ate healthy, loved vegis, etc so mostly I threw in more protein for him, more fat, and more calories. Considering he is a 5'6 male who weighs 120-125 keeping his weight up is important. Again, all with our Doctors advice and approval.

Each Dr it seems will say something a little different, but the themes are avoid falls, keep weight up, don't exhaust yourself, get rest and good nutrition.

Your fiance is lucky to have you, it is obvious you are very caring.

 

[SupportivePartner]

Nikki and LK- thank you, so very much. As far as weight goes, my fiancé is currently overweight, which may work slightly in his favor as he has less of an appetite now. We will focus on light cardio.

Your information on supplements was very helpful. Thank you. I think we will cut back slightly on vitamin D for now.

You are all champions. Thank you for your support.

 

[swalker]

As others have said, there are varying opinions on exercise.

I had one doctor (general practitioner) tell me "use it or lose it". I think that was bad advice and I no longer see that doctor.

I have been using a wheelchair for 2 years. I use a wheelchair quite a bit, even though I am still able to walk within my house and can climb a flight of stairs (very carefully!). But, walking to the end of my driveway wears me out. Walking farther than that is no longer practical for me.

By using my wheelchair as much as I do, I believe that I am prolonging my ability to do important things, such as unassisted toileting and going on trips to my favorite national parks. So far, this has worked well for me.

I do still ride a bike on a stationary trainer, though I can only stay on it for 10 minutes and cannot ride it every day. I always push a very easy gear, basically just spinning.

I think everyone is different in their response to exercise. A bit of trial and error may be necessary to figure out what works. If your fiance does experiment with exercising, I encourage going very slow until you know what helps and what harms.

Several replies brought up the topic of falls and how that can seem to hasten progression. Early use of a wheelchair is probably the single best way to prevent falls.

Falls are insidious. I am intellectually aware of my risk of falling. However, when I am doing things, I don't recognize that a fall may be starting. Once it starts, I don't have the ability to stop the fall. I just go down...often hard.

I have broken a toe, sprained an ankle, and broken an elbow in various falls. Hopefully, your fiance can learn from my folly! Once I recognized that I really was at serious risk of being injured in a fall, I started using my wheelchair more. Since then, I have been battered and bruised, but have not suffered a serious injury in a fall.

Steve

 

[SupportivePartner]

Steve,

Thank you. I relayed this information to my fiancé. He's going to be more mindful about the exercise that he does and will focus on taking it easy.

I think that falls are my next big concern. I will keep your suggestions in mind. Right now, the thought of being in a wheelchair brings about so many overwhelmingly negative feelings for him, but I will gently work it into our discussion soon.