My Dear Brother, Al, A Memory Lives On

There is a page about MSA page, called Tim’s MSA shoe, on Facebook. It has a lot of information  about different things. The story of why it is called the name above. Contact numbers, donation areas, a sharing on places like tweet. It is a very interesting page to read, especially if you want to further your knowledge about the terrible disease my brother, Al had.

There is a section about MSA angels, and tonight I was told that my brother’s name had been added. I am so proud. Anything I can do to help make others aware or help to keep my brother alive in spirit, I am all for.

I just had to share the page link with you. My brother is the first photo listed under the tab MSA angels. You can read a small description of him. Of course many, many of you followed me through my journey of caring for my brother.

Thank-you for taking the time to look at it.

I love you dear brother, and miss you still so much.

Oh How I Miss You So Today

Can you believe that it has been seven months since Al died? I know I can’t. Life goes round just like a merry-go-round. People don’t forget Al, but life throws more issues that seem to pile up and months slip by.

I was thinking of him so much today. Last year at this time we were struggling so bad with Al getting up and getting dressed and ready to get on the bus to take him to Day Care.

The Christmas tree was up and lit but he didn’t care. My heart has been hurting so bad today for missing him. This coming Halloween will be one year since Al last went to Day Care. He told me he was just too tired to go anymore. From that day forth he became bedridden.

I suppose I am acting normal; probably like anyone else who has lost a loved one. I see myself acting out the days starting now and I wonder if I will continue until his first anniversary passing.

I have a small video that I have kept tucked away. I played it today. Although it is only 20 seconds long, I wanted to feel the pain. Does that make any sense? I needed and longed to feel him near me.

I never wanted to lose him. I needed to cry today, so this is why I played the video. Hearing his voice is so important to me. I can’t hear my mother’s voice anymore. She has been gone 14 years. I have to strain to  hear my father’s voice and he has been gone 8 years this December. I didn’t want to lose Al’s voice.

On the video I am not even sure he knew I was recording him. I went in to check on him and he was talking to God. The video plays only the words of, God take me home over and over. Oh buddy, I am so glad you got your answer. You are home, safe and free of pain. You fly with golden wings for being so strong and fighting MSA until the very end.

I miss you so much. I may not see the illness in my new home, but I can see and hear your voice. Tonight, I feel so terribly alone. How can the world keep moving when I have days when I am standing still, looking over his bed, and knowing his soul had risen to the heavens.

I miss you so much it hurts. I will see you soon dear brother. I will see you soon. Love you 2shoes 2Al's funeral 6

A Quick Day

Today was a quick day. I got up and changed sheets on my bed. I swept and mopped floors and did a couple of loads of laundry. I decided to take a break and get online but about the time I did my phone rang.

It was a call that I had been keeping my hopes up for and it came. This in turn took away my break and I had to get dressed and leave. I spent the better part of the next three hours getting tests done. I didn’t expect all the extras in my time frame so my sugars dropped.

Thankfully it was carry- in day at the office I was at so they gave me a nice piece of apple/nut cake. It sure was good. It brought my sugars back up and I was able to drive to home where food was waiting to be fixed.

Have you ever been married and then divorced and ended up being better friends apart? This is what happened to my ex and I.  I hadn’t seen him for about three years. He now lives less than two hours away. He let me know he was coming by if I wasn’t busy.

When he arrived he took me out to supper. We visited and talked about old days. He helped me with a couple of odd jobs here that I had been struggling with. I can actually say it was nicer visiting than being married to him.

He says he will stop by again soon, and I agreed to this. No, no plans, no way, no relationship other than friendship. It just wouldn’t work. I had to add that part because I know a few of you are thinking ahead, so I had to take care of those wandering thoughts.

Tomorrow morning at 11 is my appointment with Humana. Still keep those fingers crossed that all goes well. I think if I heard right my daughter is going to play hair stylist with me tomorrow sometime also.

Now it is quiet again. I enjoy my quiet time; but I sure do enjoy having friends and family visits too. It isn’t good for the soul to be too alone too often, or at least this is the way I feel.

One thing I found today here at home was the flag that Al Forbes bought for my brother. It brought a few tears but not too many. I rather remembered better thoughts about Al than the sad ones of sickness.

I still have my times where I can cry and cry, but someone once told me here in blogger world that as time moves by, the good memories will replace the tears. I can see this happening a little at a time.

Although I still don’t know anyone around here except my family, I don’t see the wheelchair, Hospice, and all the sickness in my new place. It is easier now to bury the suffering he and I went through.

I shared conversation with my ex about Al and I noticed I was chatting about all the good times and very little about the sad times. This is a good feeling to me. He and I had very many difficult moments where we butted heads. With the illness on top, life seemed almost unbearable, but now it seems worth living again.


Life is what we make it

It can be good or full of shit

Fog slows us down

Sadness drags us to the ground

But then the sun rays show

That forward we must go

Thinking becomes more clear

But the love I will always hold dear

I wouldn’t change a thing today

About Al and his MSA

We shared many good days

And I put to rest the dark rays

Now when I say my brother’s name

I don’t play so much the game

Of tears and sleeping away

I can see it is a bright new day.

Written by,

Terry Shepherd



Chapter 23

The calming medications helped a little with Al’s issues of being frustrated with the tremors. The Parkinson’s medications didn’t help at all. Each visit I took Al back to the doctor, different PD medications would be tried, but none worked.

The doctor kept him on them though. I really wasn’t happy with that. I have this thing about medications. If they don’t work, get rid of them. We dealt with…

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Chapter 23

The calming medications helped a little with Al’s issues of being frustrated with the tremors. The Parkinson’s medications didn’t help at all. Each visit I took Al back to the doctor, different PD medications would be tried, but none worked.

The doctor kept him on them though. I really wasn’t happy with that. I have this thing about medications. If they don’t work, get rid of them. We dealt with each day and I watched as his tremors progressed. Nothing else seemed to be happening in this illness.

Al continued to go to the adult day program and I tried to live as if nothing had changed. He went to this one outing where the clients all went to a discount mall. Afterwards they stopped to eat and when the bus driver brought him home he stayed long enough to let me know that Al had seemed pretty tired and had actually fallen asleep on the way home.

If you knew Al like I do you would know this wasn’t something he would ever do. Al was such a social butterfly. He would fight sleepy eyes in order not to miss talking to one person.

I told the driver thank-you for the information and when I went inside to ask Al if he had a good time he was already in bed with lights out. I wished him a good night’s sleep and didn’t mention what the driver had said.

The next morning seemed pretty normal. Al ate his breakfast but instead of watching the TV like he usually did on Saturday mornings he wanted to lay down and nap. I thought this is odd. Al never misses the Three Stooges.

After he got up he seemed back to normal. I asked him, ” Do you want to go to the flea market?” and he said yes. So we hopped in the car and drove the couple of miles. Al seemed happy. He smiled and talked to ever vendor. He found a couple of coca cola bottles and that seemed to make his day.

We didn’t have anymore issues for some time, but then things changed again. Al was having chest pains. I made another appointment at the heart doctor. After checking Al he decided Al needed to be hospitalized to check for blockages.

Al wasn’t crazy about this. He always commented, ” More needles?” He was getting used to being admitted I think. The test showed Al had more blood clots in his heart valves but the doctor said they were not big enough to remove. So along with this information and now knowing that he has Angina of the heart I was getting concerned for his health.

PD, heart issues, what was next? Al was a little more quiet when we arrived back home. He seemed a little more tired and slower in movement. When the following Monday arrived he wanted to go back to his Day Program so I took him.

When I picked him up a staff member asked me to come in so we could talk. Al stayed in the rec room and I went into the office. The director said, ” We all love Al here at Day Program. He is such a nice guy; but we have rules. Everyone that attends here must know his medications and what they do for them. All must know their address and telephone number. We are not a babysitter service. We are here to over see.”

I had tried many times to get Al to repeat his address and phone number but he never got it. I couldn’t understand why the Day Program felt it was important for the clients to know what medications he took and what they were for.

The Director explained, ” The clients that come here are,


Schizophrenia (/ˌskɪtsɵˈfrɛniə/ or /ˌskɪtsɵˈfrniə/) is a mental disorder often characterized by abnormal social behavior and failure to recognize what is real. Common symptoms include false beliefs, auditory hallucinations, confused or unclear thinking, inactivity, and reduced social engagement and emotional expression. Diagnosis is based on observed behavior and the person’s reported experiences.

Clients with this diagnosis need to be aware of what they take and why so they can live a more productive life. Al does not have this diagnosis and we all voted for him to join us here since he is so nice. But now, he seems tired and he is starting to repeat himself. So we don’t have time to keep a better eye on him, so we must ask you to not bring him back anymore.”

I was devastated but I knew Al would be much more than that. Standing up to leave the director shook my hand and gave me his apologies and said, “We sure will miss him.”

I went in and found Al and said it was time to go home. I didn’t mention the conversation all the way home. He went to his room and turned on the TV and I went about starting supper.

During supper we were both quiet. Al didn’t talk much unless I started the conversation when it was just us. He never could mentally separate me from our dad. Al and dad didn’t get along at all. With dad not accepting Al for being someone other than the common word normal, there was much friction between the two all of Al’s life.

Dad was short-tempered with Al. He wanted him to be quick to move and answer like most people. There were barely conversations between the two that were ever looked at as social.

Al looked at dad as the boss. When I started caring for my brother, I had to guide and teach him many times and Al looked at me as the boss. He could never separate the two people.

This was Al and my biggest issues in our living together. It hurt me so bad that Al couldn’t see how much I loved him and wanted him to have fun and to be happy. Many, many times I would end up almost screaming at Al after a trying conversation that I was not dad, but me, Terry, his sister.

I would ask him, ” Do I look like dad?” He would begin to cry and say no. I would get frustrated and walk away. None of this changed until many months later.


Birds And Al

Today was terribly windy outside. I sure hated to have to go out considering I still have a small cough left. Al had a care plan meeting that I needed to attend to. He was sad as it was too cold and he didn’t get to go on an outing with his driver today. His legs are hurting so bad that this is making him more miserable.

His voice was raspy so I used the flashlight to look at his throat. That little thing that hangs down in the back of his throat was lying on the side. His throat was a little red. He had no fever, but I reported it to the nurse.

Since he is having trouble with swallowing O.T. is going to get involved again to see if he is straining too hard to swallow. I sure hope that isn’t the reason, because the news would not be good news.

I am working on getting him out of this facility and into a better situation. Many people are involved in this project. Al agrees with me he would like to move. If I get everything worked out he will be in a home, group home type. He will have fewer clients around him. They will be more like him and closer in ages, so he would get more attention. His food intake would be more closely monitored and so would his spending money.

After I visited with him for an hour I left his room and went to the meeting room. No one was there so I had to use my time wisely. I got out my camera and went to the window and took these shots. I am hoping you enjoy these as much as I did taking them.

After the meeting was over I did some work on Al’s menus for the week. Without my two cents and guardianship  they can not say no to his foods. He has gained too much weight so Al and I together chose his menus. I hope he felt included so he doesn’t get as upset.

I stopped at the grocery store and picked up basics in case we do get that big amount of snow tomorrow. I just received a phone call from the lady who is going to be helping me move Al out of this facility. Darn, darn, I have to get out tomorrow after all. I am sure it will be cancelled if it gets too bad as she is farther north than I am. She will get more snow than we will here.

female cardinal at millerstwo birds at millersredbird at millersfemale red bird at millersone bird at millers