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Sams HDLS

samshdls
1 Recommendation

On Friday, July 4, 2009, Paul, passed away quietly in his sleep, as a result of complications from Diffuse Leukoenchephalopathy w/ Axonial Spheroids.

It is fitting that on July 4th, he became free from his pain and suffering from the dreadful disease, that robbed him of his mobility, mind, and ultimately his life.
We will celebrate his Independence Day, Monday in a service for family and friends.

It is with great sorrow that we will be saying goodbye to him, after a short life of fifty-two years, yet we are delighted in his freedom.

Please remember our family in your prayers. To anyone living with any form of Leukodystrophy my message to you is; Rejoice in knowing that one day you will be free from the pit of pain that has been your existence, for God will lift you high, set your feet on HIS solid ground, and you will once again walk, not alone, but with God as your companion.

God bless all of you, you will forever be in my prayers.

Lisa

Explore topics in this discussion:

Pain Memory Stroke Leukodystrophy

13 replies

CIDERFOUR

Lisa, my heartfelt sympathy goes out to you. I'm sure his passing will leave a tremendous void in your life. My prayers are that your cherished memories should get you through this difficult time, and they will also carry you in awe throughout the passage of time. Blessings to you.
Love, Connie

gannymom

Lisa, my condolences, my prayers for your peace and comfort. I could tell from your posts you are a woman of faith, it has been tried and tested already, probably beyond most, but there will be more in a different way, trying to find yourself after such tremendous caring for a loved one as you have done. continue to rely on God but also remember, he sends our friends, family, church, others, like this site to comfort and support. My 1 line of advice (sorry unsolicted) my son realized was so true after the passing of his young wife. "Don't make any significant life changing decisions for at least a year." If you can maintain your house, your situation, your work if you have it or to return to, your current circle of support, as well as relationships. Grief has a way of clouding our needs, desires, and judgement, so gird yourself in God's word and prayer, feed yourself physically and spiritually, take time to grieve, but also to mend and heal for yourself so you can rediscover who you are as 1, though very influenced by your husband. My wishes to you, and again, His Grace is Sufficient.
Sabrina

TaSad

I'm so very sorry for your loss. God works in mysterious ways. You seem like a very strong woman -realizing that God is with your husband and freeing him of all pain. Hold onto your faith and know that you have lots of prayers coming your way. Thank you for your words shared- you are an inspiration

Nolans

Hi Lisa,
So sorry for your loss. I am not blessed with the same faith that you enjoy, so cannot honestly provide the expressions of sympathy that would be based on the existence of an afterlife. We are new on the ULF site though experienced with the condition. Our Fraser is now 19 but his diagnosis has been testing our resolve for over 10 years. Can you share with us the date of Paul's diagnosis ? Fraser is "Other" as well and therefore it is difficult to get any kind of handle on "How long". We feel helpless without some direction in this area as planning is virtually impossible. We have a 13 year old as well and need to provide for him. I've lost 2 brothers at 54 each to Cardiac conditions, so, facing the possibility of my own mortality, am eager to make the most sensible projections possible in the circumstances !

samshdls

Nolan,
Thank you for posting to me, for your sympathies so nicely expressed.
I am sorry to hear of your son, I know how difficult it was to watch my husband progress through his illness, I can't imagine how it must feel to have your child go through this.
I will be more then happy to share any insight that I have, with you.
My husband was diagnosed in 2008, we began the process of seeking help in 2006. Paul was diagnosed as progressive, yet "how long" was a guestion mark for us. It is anyone's guess as this disease is so varied and so little is known about it, except taht it is devastating, and it is a thief in the night.
There is a range with all of these Leukodystrophy based diseases, they range from typically 3 to 20 years, from onset of symptoms. Patterns seem to be the best way of being able to predict what course each one will take. Paul was at the rapid progressive highly degenerative end of that range. However, we did not know that at first, as it was not until the beginning of 2009 that we realized just how progressive he was. He presented with the first truly noticable symptoms in 2005, however we had NO idea what was wrong. Two years later we had a "presumed" diagnosis, yet as we were told a definative one would not be made until autopsy, and as Paul used to joke, " I did not opt for autopsy at that time". He had a great sense of humor, even in the worst of times.
So to answer your question, I can only tell you, that for us, we had a very short time with him, from diagnosis until his death.
I found it helpful to keep a timeline of changes, that began from onset of symptoms, and would carry through until his death. Looking back at that timeline, I get a visual of how the last several months, from February until July, were one physical change to another. I will tell you that once changes seemingly are one on top of the other, seems to be a clue as to "how much time" you may have left with your son. I am praying that you are not experiencing that right now. These words come with difficulty, because all we have is hope for our loved ones. I feel your pain, and I remember a desperate call to Paul's doctor at the Mayo in Florida, with my asking exactly what you asked me ... how much time do I have left with him, and what can I expect. No one wants to answer that, because it is so difficult to say with any certainty.
I was prepared for his death, but in the end, it came upon us very fast, and truly sooner then I expected.
We do not know exactly when or how our loved ones will pass. For Paul, he actually died from renal failure, just one year after he was diagnosed. He had opted to not have any artificial means of keeping him alive. He developed difficulty with swallowing, nothing would go down, not even liquids. Once that happened, he died three days later.
With all that said, please indulge me as I say two more things. Regardless of "how much time" you have left with him, let me say get things in order now, for when the time does come, you do not want to be dealing with decisions. Pauls greatest gift to me was in my not having to make decisions for him. He stated clearly, in writing, what he wanted and more importantly what he did not want.
Second, get hospice involved in your son's care, if you can. They are wonderful and when the final days do come, they will help that transition for him be peaceful, and, if at all possible without pain.
I know you do not believe, but I do, and in that belief comes intercessory prayer, and I hope that you do not mind if I pray for you and your family.
Feel free to contact me back if you like.
Lisa

Nolans

Hi Lisa,
Thanks so much for such a complete response.
No prayers will ever be rejected ! We are a small community in Barbados (pop. 260,000) and there are many praying for our son.
I will be visiting with a christian faith group tomorrow as well as the HIV foundation to see what is available locally as hospice services. Investigations to date suggest that the answer will be nothing.
Fraser's cognitive functions are slipping in step (bad word :-) with his mobility, which means that explaining to him what is happening or why is virtually impossible; as is expecting him to provide direction regarding his affairs. Not that he has any.
We have no reason to believe that Fraser's passing is imminent. His deterioration to date has been insidious but constant. If we "connect the dots" as one doctor suggested, he may well be around for several more years.
One day we will have to struggle with the decisions regarding feeding tubes "Yes" or "No". At the last ULF meeting a couple of weeks ago there was a joint presentation by parents of different children who had taken opposing positions on this. I found it useful.
So Paul's period of illness was relatively short. Probably a blessing for all concerned. If he shared your faith i am sure he would agree.
Cliff Nolan

connie-kev

Hello Lisa
I am new to this support group. I believe that I am a carrier to my son who has been diagnosed with one or more of the leukodystrophy families. Not yet definite which one. He was born with learning disabilities and was able to walk until the age of 22. Then, gradually, his gait became a problem. Dragging his one leg and experiencing pain from the hip down. That was 8 years ago. He went from a cane, then walker, to now a wheel chair with both his legs paralyzed. In the last few months he's now experiencing bladder problems, speech and swallowing is difficult, memory is going, many new symptoms have shown up. The doctors just did another MRI, nerve conduction test, and lots of blood work. I should get these results this week. He's in a group home with young adults with disabilities, however, it's looking more like we'll have to put him in a nursing care facility. My husband and I have taken my son across the country to try and find out more about this rare progressive degenerative disease. Like many others that are in this situation, everyone is different, there is no two alike. Can you tell me more about your husbands symptoms and what kind of help you received?
You sound like you are a very strong person. Would like to know how you dealt with the "downside" of this devastating disease. My condolences to you. Your husbands in a better place.
Thank you
Connie

ck77

Lisa,

I am so sorry for your loss. I know it's been a few months, however, I just found this site tonite. Hope you are coping well, and as you know God had a plan for your husbands life. As He does for yours. Your posts are truly an inspiration. May God bless you as you continue to heal.

samshdls

Hi Connie I am so sorry that I neglected to answer your post to me sooner. I have no excuse i simply did not see it.
I am so rry for your son and what youa re going through. You are right that everyone seems to have a measure of difference betweeen cases, however with that said, there are commonalities that are most consistant. the discription that you have given me seems to be consistant with my husbands progression. Time frames being the difference here, as he was an adult onset, that did not present until his middle to late 40's.
Paul, presented with the same symptoms, in about the same order as yor son. the end came for him, once he lost his ability to swallow, and the pain from his muscle spastisity became so intense that he had to use a Sub-Q pump for Dilaudid. he actually died as a result of multiple organ failure on July 4th. We believe that he suffered a stroke in his sleep, and he lasted for three days after that.
We recieved help from home nursing organizations, and in the end, he was with Hospice.. a true manifestation of God's hand, Hospice was a huge help to us.
Paul's disease process was rapid, 40 months from onset of noticible symptoms, through diagnosis, treatment consisting of comfort care, and ending with his death.
Please do not let me end my post to you without some words of encouragement. It is true that there is NOTHING to stop the progression of this dreadfull disese. There is comfort to be found in the blessings that God provides us, during their suffering, ( ours as well), when we seek Him out and open our hearts to his blessings. The promise that God has given us that "His will will not take us, where His grace will not protect", is absolutely true. Look to Him, and he will give you blessings that will give you comfort.
Every day that you have to help your son, is a gift. And as wil all gifts sometimes they can be difficult to deal with, remember those toys you had to assemble, but once dealt with, they brought joy and fun to your moments with your son.
I hope this helps, and if you would like to talk further please do not hesitate to ask.
Enjoy today,
Lisa

samshdls

Thank you for your words of support and comfort. Yes, it has been 70 days since Paul's passing. I am coping well. The first 45 days were the absolute most difficult to deal with, all the paperwork, the attornies and the finalizing of his business, robbed me of the time that i needed to grieve. That has now passed and I am on the right course for recovery from a very difficult 40 months.
God is great in keeping with His promises to me, all I have to do is be quiet enough to hear Him, lol not a problem as my home is stone cold quiet now.
I am doing some traveling; while trying to determine what I want to do with the rest of my life.
Again, thank you for your interest and support, as I certainly need all that i can get.
Enjoy your day, as mine is getting away from me.
God Bless you and your family,
Lisa

breezygirl

Hi Lisa and all, I am a home health care worker and have just started with a new 51 y/o woman client with adult onset Leukodystrophy. This is my first time hearing of this disease. My client has several home care workers from different agencies, she is bedridden and has lost the use of her right side. I would like any advice as to what to do to help her. How can I make her more comfortable? What games can we play? I am at a loss and would value any info from anyone with experience in coping with this desease. Thanks for being there for one another.
Nancy

samshdls

Hi Nancy, thanks for posting to me. I can give you some helpful things to do. Use pillows to elevate her right arm off the bed and her right leg as well. I used a rolled up hospital blanket under Paul's ankle to get his heels off the bed. Use elbow and heel pads to cushion and protect from skin breakdown.
Use lots of lotion (barrier creams like Aand D ointment) on her skin and use massage to stimulate circulation. The pain on the right side can be intense, so be sure to rotate her padding often and try to be gentle with her. Do not let her bedding get bunched up under her, wrinkles are her enemies.
As for expercise, I know the instinct is to do it but it can be painfull and honestly, it will not help slow the progression of the disease course, with that said do it anyway. Simply raising her arm up and then lowering it down several times will help. I made use of soft Nerf balls, like a small size basketball. Paul would hold it in his hands and squeeze it when he could. This is theraputic, in that it helps release tension, but it also prevents the clutching of hands together, which causes skin breakdown. I remember one day Paul was upset with me, he threw a hard rubber ball in my direction, he missed! lol later that day I went to the toy store and bought Nerf balls, I figured if he was going to throw it, then it had better be soft enough to not hurt me!
I used a body pillow to put under Paul's right side, to help to adjust him in bed. You have to rotate her many times in the day so she does not lay in one position. body pillows are soft yet firm enough to get her off her back and onto her side a bit. I am sure she will not let you put her totally on her side, as that is painfull, so you will have to raise her off the bed with pillows.
I found that a good bath everyday, with warm water helps to stimulate good skin health. My hunsband died without one pressure sore on his body. We worked very hard to prevent them, because once they have them they are so hard to heal.
Ok this is alot to take in.. and I am not sure what direction you want to go from here. So email me back with any other questions, I am happy to help.
God bless you, and remember your hands are the extension of Gods.
Enjoy yur evening,
Lisa

JOSHYSMOM

hello Lisa, my name is Patty and I have an 8 year old son who has hypomylination with atrophy of the basal ganglia and cerebellum it is categorized as a rare leukodystrophy. He is such a tough little guy but it is so hard watching him get worse. He went from walking and playing to barely being able to crawl in just a few years. I to share your faith in God and know he has a plan and a purpose for us all. I just wanted to let you know how sorry I am for your loss and let you know that your in my prayers. We may never meet in this lifetime but one day Jesus will introduce us to each other in heaven and our loved ones will be perfect. Hang in there, there is a day coming where there are no more tears for us!

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