My journey to the new here...

[jaynecass]

Hello Everyone. I'm so happy to have found this Forum while googling away this morning. It looks to be full of exactly the right kind of people I need to communicate with. I was diagnosed Oct of 2014 with ALS. It was a lengthy process, rather frustrating as even the neurologist I was working with just didn't want to give me the bad news. Kept sending me to other specialists until I finally insisted on one last EMG which brought the final diagnosis. One of the most fascinating aspects I find of this disease is how it "runs" so differently in all of us, making each and every one of our stories unique.
I spent 30 years of my adult life singing opera in Europe. After the usual period of finding one's niche, I ended up singing Richard Wagner's heroines. Brunnhilde, Isolde etc etc. some Richard Strauss, the loud and high stuff with a 120 piece orchestra right under me. I was employed in some of the most wonderful houses in Germany, Italy, France, Belgium and to do what I was actually trained for and what my heart and soul most desired. So the irony of contracting a disease that has already taken my singing heart, and will reduce my self to the veritable antipathy of what my life was, is not lost on me. As some one who prided herself on DOING for myself, I find the ASKING for help to be one of my biggest challenges. I am a single mom of two wonderful children aged 23 and 16. My daughter, the 16 year old has been with me every step of the way and has taken on way too much responsibility. We're currently looking for support groups for her age group here in Phoenix but also online. Any tips? Much also to my luck, is that my family has stepped up to help in the most unexpected and astonishing ways. My Sis is a clinical social worker in Michigan and through her fierceness I was the first patient of a new ALS Dr. here at Barrows Institute. My brother and his husband have picked up and moved to Phoenix from D.C. to house us and coordinate my care, assuring also that my daughter can have a finish high school on time and continual care and support from family members.
I don't know much about silver linings, I don't speculate much about what goes around comes around, nor am I at all a religious person, but the opportunity this disease has provided us to come together as family and friends, the chance given us to grow and love is most profound and has added new meaning to "it is what it is". I don't find myself bitter or regretful, but most certainly frustrated as the weight of everyday objects becomes to much, or my right leg begins to falter now in balance, or I once again fall, tripping over the floor mat at the Triple A store while having the oil changed. I find it's the accumulation of the little stuff that piles into the large heaps that gives rise to the roller coaster most everyone talks about. I look forward to many lively exchanges on this forum and any support I can give, or reception thereof. Jayne

 

[cheerleader]

Jayne, read back over some of the old threads. You will find a wealth of information.
Sorry to welcome you, but you will find understanding that no one who hasn't lived with this can give you. So glad you are experiencing such a surge of love and caring. That means a lot in this disease. Donna

 

[Gembead]

Welcome, you have a wonderful attitude, I beleive that really helps in all the adjustments that will come your way.
Love and hugs
Gem

 

[Nuts]

Welcome, Jayne. This is a very informative place full of wonderful people. It sounds like you have a very supportive family, but now that family is even larger. Yes, the accumlation of things does put us over the top, so perparation is very important with ALS. It sounds like you will be very proactive. Unfortunately, things can change very quickly and pile up in unexpected ways, so that positive approach of yours will be extremely helpful. If it does get overwhelming, we will be here.

One of the things that really strickes me about ALS is that it seems to strike strong, active, accomplished people. This is not a disease of neglect or misuse, but maybe of overuse. Everything that I've read about that theory mentions body builders, weight lifters, and military, but in your case--if overuse is an issue, perhaps the diaphram.

The respritory therapist who came out to the house last week told us that she has never meet a PALS who was not a wonderful person, and that this is the ONLY disease that she can say that about. Well, I'm rambling. Again, welcome.

Becky

 

[affected]

I'm so sorry to welcome you here Jayne.

You have already poked about a bit by the sounds of things, and yes the people here are just the kind of people you want to get to know and lean on and give back to.

I'm so heartened to hear of how your family have rallied to you, it's not always that way, but this disease sure sorts the wheat from the chaff!

Please be careful with your walking! I know you want to be independent but falling can cause serious injury that you won't heal from completely, and it will hasten your progression. I do rant on that line a bit here, but everyone will back me up on the importance of this too.

I'm not sure, but there may be a fb group for children of PALS your daughter could search on?

 

[anderkling]

Welcome to the forum, Jayne. Thank you for sharing all you did about your life. You've enjoyed so many rich experiences as an opera singer in Europe over 30 years! That must have been a very exciting and fulfilling career. I can understand the challenge of having to ask for help, of being dependent. I too was fiercely independent, a "doer" always on the go. But how wonderful that your family has rallied to support you in so many ways--your brother even moving from D.C. You will be well taken care of. Your 16 year old daughter who is there to help must be such a blessing. Please take care not to overdo it and put yourself in harm's way (falling). On this forum, I've read about conserving energy, and I've taken this to heart because I've come to realize that I do better when I don't do as much physically, but pace myself.

 

[Nikki J]

Welcome. Sorry you must join us though.
It sounds like you have good support personally and medically which is great.
I echo the calls to be careful of falls do you have an afo? Getting one early can really help.

 

[Mike in Maine]

Welcome and sorry you had to join us. These great folks here that will help in any they can. Enjoy hearing your great attitude, it helps mine thanks


Mike

 

[nebrhahe53]

Hello Jayne:

Welcome to the cub no one wants to be a member of.
As to your question on support groups, there are the local ALS clinics which tend to also have support groups, but there are private ones as well.
My 18 year old daughter went to a support group called Worries and Wonders-set up specifically for children of parents with terminal illnesses. She reports this helped her. This is an organization in Austin, but I'm sure an area like yours would also have similar ones. We found out about this through our local ALS clinic.

As for the comment above
>The respritory therapist who came out to the house last week told us that she has never meet a PALS who was not a wonderful person, and that this is the ONLY disease that she can say that about.

I would gladly have been the worst SOB on earth if it would have prevented this disease.

 

[nebrhahe53]

Also Jayne, forgot to mention that in addition to injury, any sickness you get also speeds up illness progression. Whatever you do stay away from sick people-a respiratory illness that used to be uncomfortable can now become fatal. And we dont recover lung function that we lose.

 

[jaynecass]

Thank you all so much for your great words of support and caution. My right leg is now becoming the weakest one so the balance issues for me are not only front back, but becoming side to side also, so most certainly I'll be adapting to a small wheel chair for outside excursions. I'm not sure what an afo is. I do have calf braces that have helped immensely with just standing and trying to do heel toe work. Thank you all so much as we move on.
Jayne

 

[kingsaustin]

I, too, am sorry to have to say welcome Jayne. But as a caregiver to my husband, Rick, I will say this forum is our window to those who can actually relate to EXACTLY what we are going through and who can bring peace, humility, humor, information, comradery, and most of all the much needed solace. So happy for the love and care your family is choosing to give you...you are blessed.

Looking forward to a long forum relationship...btw, my husband is in his 5th yr.

 

[John1]

Hi Jayne and welcome to your extended family. As others have mentioned, a positive attitude is one of our few defenses against ALS and you certainly have it. I'm glad you obtained a wheelchair. It will not only protect you against falls it will greatly increase your mobility and reduce energy expenditure.

I recommend you also try a small mobility scooter. They are inexpensive and wonderfully easy to use. I rented and then purchased my first one in 2005. I am still using one, the Pride Go-Go Elite Traveller 3-Wheel model. You might consider renting one as an alternate to a chair and then buying one if you like it. I now have a stable of 3 scooters; a small one for in-house use, a medium one for going out for shopping and work and a big 4 wheeler for running my dog and going out on trails. I've not been able to walk at all, even using a walker, for about 2 years.

 

[smoochiegal]

Jayne,
Welcome. And I am sorry.
As a CALS, these forums have been invaluable to me.
As terrible this disease is, I have found so many good things in people. People who are there for us no matter what, people who help without being asked and brothers who move to be an active part of your care. These are the things that keep me going.
I have to focus on the little good things or else the big bad things of this disease would break me.
You are among friends here.
Cheryl

 

[Graybeard]

Welcome to Heartbreak Hotel, Jayne.