Monday, May 27, 2013

What I miss before ALS:


What I miss before ALS:
I miss my independence. I miss having the ability to jump in the car and go. I could just go visit someone, get something to eat, hit up the mall. Even if I didn’t want to go anywhere, which wasn't uncommon, the fact remained that I could. It was an option and in my control.
I miss talking on the phone. Now my family may try calling bullshit on this because I’ve never liked phone conversations. Only out of necessity. I usually kept my ringer off. I’m a text person, and thankfully you can get most things accomplished by text or email. This is far from the worse thing I miss, but I realize now just how often I did use the phone. Things like calling to cancel or make an appointment. They just don’t understand me. Now my husband makes calls for me. I appreciate it so much, but it makes me feel useless, helpless… searching for the right descriptive word. It can also be just plain embarrassing. I mean who has their husband calling to schedule their annual pap-smear appointment. That’s not particular to me, just a random example, trying to get to the point, the feeling of it. Some of my family does OK on the phone with me but I’m hearing, what, more and more often.
I miss having a conversation.This may seem redundant but it’s different from the phone. Usually one on one, and in a quite place is OK, I can be understood. Even then it doesn’t take long before I have to use more effort speaking, then I get short of breath and it’s harder to get my words out. I never was one that felt the need to dominate a conversation, but I do like to contribute at will. A lot of times I feel like my voice is only clear and loud enough to send a subliminal message to others. I can’t tell you how many times I’ve said something, nobody acknowledges, then someone says exactly what I just said. I want to scream, excuse me, I just fucking said that. I will say, even though hearing a lot of Whats can get frustrating, I’d rather know someone didn’t understand than to just go along as if they did. I can usually tell and it feels demeaning. I also admit I would probably do the same in their position.
There is no handbook on how to act or react when an able adult starts losing abilities. I’m not mad at the people. I’m angry as hell at ALS.
All of what I miss before ALS that I’ve mentioned does have to do with independence. That’s what ALS does. It takes everything from you. People I’ve met very recently I feel don’t get to see the real me. I want to say I am still that person, but in some ways I’m not. Something has changed a little in me. I am still in here though. I have a husband that knows me very well. This is hard on him too, I also know him vey well. There’s no hiding our feelings from each other much, we know.
I have family that is there for us and when we’re ready, they will step up more. I’ve kind of held the people I love the most at arms distance. I’m not ready to say, “I need your help.” I can still do a lot of things on my own. I’m keeping watch on Tony too because when it’s too much for him, it will be time to ask. Don’t get me wrong,  family has already stepped in for us in their individual ways. We’re so thankful to have them.
I’m sure a lot of people with ALS understand this perfectly. Others, maybe not so much if they’re the type who have no problem excepting help. I’m the stubborn person singing, I’m not ask anybody for anything if I can’t get it on my own. That is changing, and without my consent. 
I hope someone related to this blog post, or it helped in understanding what ALS is doing to a loved one. I still have a long way to go and a lot of learning to do myself.
Until next time, take care,
April

9 comments:

  1. Stumbled upon your blog. Would you like to know about an up-and-coming alternative treatment, derived from natural rainforest plants, thas has shown promising results in initial trials (including the US) in relation to ALS and other neurological diseases? I sometimes contact people in your situation that I happen to come across online or elsewhere, on this matter. Please write me at: hellspawn_dg@hotmail.com. Regards, D. Gustafsson, Sweden.

    ReplyDelete
  2. .My name is marck from USA, I want to testify to the entire world of how i got cured by Dr OHIMAL healing spell from ALS. I have been living with this deadly disease for the past 11months, i have done all i can to cure this disease but all my efforts proved abortive until i met a old friend of mine who told me about a spell caster who cast spells to heal all kind of diseases, though i never believed in spells i decided to give it a try when i contacted this spell caster, he helped me cast a healing spell, low and behold, when i went for a checkup i was told i am negative. Contact this great spell caster for any kind of disease via this email drohimalspelltemple@gmail.com Good luck

    ReplyDelete
  3. As a sign of gratitude for how my husband was saved from the dreaded ALS, i decided to reach out to those still suffering from this.
    My husband was diagnosed of ALS in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he had difficulty swallowing, all his joints were dead and that made him immobile to mention but a few. we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and he left the contact of the doctor who had the cure in 2015. I never imagined ALS has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in three months he was fully okay even up till this moment he is so full of life. ALS has a cure and it is a herbal cure contact the doctor for more info on josephalberteo@gmail.com on how to get the medication. Thanks for reading my story.

    ReplyDelete
  4. My mom ALS (amyotrophic lateral sclerosis) symptoms started out with a "foot drop" on her left foot. From there her left leg lost all muscle tone and all the entire left leg muscles was almost gone. Also her fingers and thumbs "contract" at times. Left arm is losing muscle tone too,she have been suffering from amyotrophic laterals sclerosis (ALS) disease for the last seven years and had constant pain which really get us worried, especially in her knees, the only treatment for this ALS (amyotrophic lateral sclerosis) is natural organic treatments honestly ,totalcureherbsfoundation .c om has the perfect herbal remedy to all the Motor Neuron Disease including ALS.

    ReplyDelete
  5. My father was diagnosed with amyotrophic lateral sclerosis (ALS) in the summer of 2013; His initial symptoms were quite noticeable. He first experienced weakness in his right arm and his speech and swallowing abilities were profoundly affected. We all did our best to seek help for this disease no medications they prescribe worked ,we were all scared we might lost him due to his condition, as he had been his brother's caregiver a few years earlier for the same disease before he past. doctor recommend nuatural treatment from total cure herbal foundation for his ALS we have no choice to give a try on natural organic treatment ,this herbal cure has effectively reverse my father condition ,losing his balance which led to stumbling and falling stop after the completing the herbal supplement which include his weakness in his right arm and his speech, home remedies from totalcureherbsfoundation com is the best although their service is a little bit expensive but it worth it, they save lives.

    ReplyDelete
  6. I have been suffering from Herpes for the past 3 years and 8 months, and ever since then i have been taking series of treatment but there was no improvement until i came across testimonies of Dr Osasu on how he has been curing different people from different diseases all over the world, then i contacted him as well. After our conversation he sent me the medicine which i took according to his instructions. When i was done taking the herbal medicine i went for a medical checkup and to my greatest surprise i was cured from Herpes. My heart is so filled with joy. If you are suffering from Herpes or any other disease you can contact Dr Osasu today on this Email address: drosasu25@gmail.com or WhatsApp him on this Tell.Number +2347064365391
    ….
    Dr.Osasu also cures:
    1. HIV / AIDS
    2. HERPES 1/2
    3. CANCER
    4. ALS (Lou Gehrig’s disease)
    5. Hepatitis B

    ReplyDelete
  7. For years, I have read and seen the advertisements in the mass media about all of the penis enhancement pills and thought that they were all scams or gimmicks. All of the medical sites that I have visited stated that none of the herbal supplements would ever help increase the size of a penis. I got very depressed when I read this, because unfortunately I was not naturally blessed with a penis that was big enough to arouse my sexual partner or past partners. I am a man that is past my sexual prime time and my sexual performance has a lot to be desired. I decided to try Doctor Akhigbe herbal medicine after all the reading and researching that I have done.I saw a testimony " Joe" about doctor Akhigbe Herbal Medicine Since there is a Money Back Guarantee, I give him a trial what did I have to lose? I couldn't believe the results I was seeing after drinking the Natural  Herbal Medicine  and Herbal Soap to be Rubin my penis! he sent to me through DHL courier delivery service . Within about 2 weeks I had a noticeable increase in the girth of my penis. Then after a couple of additional week it started to grow in length and I was amazed and very excited.before I finish the drink and the soap my penis had grown an additional two inches. I've had a considerable improvement with my sex life and these pills are certainly worth every penny I spent on them! I want to thank Dr Akhigbe for the time and effort they have spent on helping people in my situation.I know many are out there who are suffering this problem and they need help, email him.    drrealakhigbe@gmail.com.    He also cure other diseases like: Painful or Irregular Menstruation. HIV/Aids. Breast Enlargement. Diabetics. Vaginal Infections. Vaginal Discharge. Itching Of the Private Part. Breast Infection. Discharge from Breast. Breast Pain & Itching. Lower Abdominal Pain. No Periods or Periods Suddenly Stop. Women Sexual Problems. High Blood Pressure Chronic Disease. Pain during Sex inside the Pelvis. Pain during Urination. Pelvic Inflammatory Disease, (PID). Dripping Of Sperm from the Vagina As Well As for Low sperm count. Parkinson disease. Lupus.  Cancer.  Tuberculosis.  Zero sperm count.  Asthma.  Quick Ejaculation. Corneal Ulcer, Gallstone, Terminal Illnesses, Premature Ejaculation. Herpes. Joint Pain. Stroke. Weak Erection.  Erysipelas, Thyroid, Discharge from Penis. HPV.  Impotence Effection, Hepatitis A and B. STD. Staphylococcus + Gonorrhea + Syphilis. Heart Disease.  Pile-Hemorrhoid.rheumatism, thyroid, Autism, Penis enlargement,  Waist & Back Pain.  Male Infertility and Female Infertility. For your cure email him now:   drrealakhigbe@gmail.com    or Contact his number:  +2349010754824.

    ReplyDelete
  8. My name is Donald Boykins, I'm here to appreciate Dr Akhigbe for using his herbal medicine to cure my herpes virus. Is about 3 years and 6 months now I have been living with this virus and it have really really be a serious problem to me, I was so confused cause I have been taking several drugs to be cure but all of my effort was in vain, one morning was browsing through the internet then I saw several testimonies about Dr Akhigbe curing people from herpes virus and Immediately I contacted Dr Akhigbe on his email:  drrealakhigbe@gmail.com. I told him about my troubles and he told me that I must be cured. He gave me instructions and which I rightly followed, so he prepared a herbal medicine and sent it to me which I used for three weeks and I was cured totally everything was like a dream to me and my herpes was permanently gone. Dr Akhigbe God bless you and give you the power and wisdom for more cure, I don't know if there is any one out there suffering for herpes virus or any other of there diseases. DIABETES, CANCER, HIV/AIDS, HERPES, HEPATITIS A&B, HEART DISEASES, CHRONIC DISEASES,  YELLO FEVER, EPILEPSY, LUPUS, STRIKE, SPINAL CORD, ECZEMA, KIDNEY DISEASES, ACME, BACK PAIN,   DENGUE SCHIZOPHRENIA, POLIO,MULTIPLES SCLEROSIS, HIGH BLOOD PRESSURE, VAGINAL  DISCHARGETHYROID, ARTHRITIS, MENINGITIS.etcWhy don't you contact Doctor Akhigbe and be free from your diseases because he is very good and honest herbalist doctor, he is also know as the godfather of herbal root. Contact him now via his email:   drrealakhigbe@gmail.com         or whatsapp   him on     +2349010754824.         website https:drrealakhigbe.weebly.com

    ReplyDelete
  9. FINALLY FREE FROM HERPES VIRUS.
    what a miracle i never believe there is cure because my doctor tested me herpes positive and she told me there is no cure, i’m very happy today that i’m having a free life without this herpes virus, i can remember some months ago when i was crying all through the night and day that i can’t get cured from this herpes, i found this herbal man called Dr sunny on internet when i was doing research on cure for shingle i contacted him to found out if i can get help from this herpes virus, i was so surprise when he told me that he have the herbs cure to it and he sent me the herbal in less down 5 days i was so happy when i get someone giving me hope that he can cured me i took the herbal for just 2 weeks, when i went for test after taking the herbal i found out that i am cured i was so happy and surprise, i want to use this opportunity to inform you that there is cured to herpes virus you can also contact him for his help as soon as possible so that you can get rid of this herpes once and for all you can reach him through this email: drsunnyna@gmail.com or whatsApp him on +2348077875210 You can also contact him on any disease and virus in this he all have the herbal cure to it.
    1 HIV/AIDS
    2 HERPES
    3 CANCER
    4 ALS
    5 HEPATITIS
    6 DIABETES
    7 LOVE SPELL
    8 INFECTIONS
    9 HIGN BLOOD PRESSURE,.....
    THANKS TO DR SUNNY FOE THE GOOD WORK IN LIFE YOU ARE TRULY A BLESS.....

    ReplyDelete