‘There and Back Again’!

Readers who are Tolkien fans will recognise the title of Bilbo Baggins’ memoirs in ‘The Hobbit’. Bilbo’s adventure culminated in the slaying of the dragon Smaug and the return of the treasure to the dwarves.

My own ‘adventure’ hardly compares, except that it was life-threatening like Bilbo’s.  My ‘dragon’ was my swallowing difficulty. Going ‘there’ meant losing 45-50 pounds (plus corresponding strength and energy)  from a stocky 5’7″ frame. Instead of slaying my dragon, it was bypassed via insertion of a G-Tube into my stomach. But I’m getting ahead of myself.

In the beginning

Early in 2011, as my swallowing problems first presented themselves, I began to eat less at meals since it simply took me longer to chew well before swallowing. I began to lose weight, quickly enough to move us to seek strategies to stop the weight loss. Smoothies and milkshakes seemed to help. By the end of 2011, my weight seemed to level off just above 140, a drop of about 25 pounds. Unfortunately much of the weight loss robbed me of shoulder and arm muscle, and as a consequence I lost considerable arm function.

There

Then a fast drop of 10 lbs. early in 2012 and a bad swallowing test convinced all of us that a feeding tube was the only option. Another month would pass before the out-patient surgery happened on May 16. I had lost almost 30% of my body weight and now weighed only 120 lbs! I had felt very weak the last few weeks. It was almost too late! However the procedure seemed to go very well. I went home to begin my tube-feeding life.

Each 240 ml package of formula food contained 480 well-balanced calories. The strategy was to start slowly using a pump and build up flow speed and amount to 4 packages daily (1920 calories!) at the rate of 160 ml/hour. That would still mean I would be tethered to my pole for 6 hours daily! But I had a setback 3-4 days after the surgery. I developed a raging infection in the wall of the insertion site, and spent a night in Emergency to get started on antibiotics. In 10 days, the infection was still there, so I got another 10 days, which helped but didn’t get it all. I am starting round 3 today.

During the first few weeks, there was some discomfort getting used to the new food. The formula seemed to back up and come out my nose and mouth, especially at night. Then I seemed to get a cold, or is my nose like a tap because a tube was inserted through my nose to my stomach during the surgical procedure?

Back Again?

All that was more than balanced by two good news events. A community dietitian visited us at home. She was a font of knowledge, and we suddenly realized that we did not have to use a pump or gravity; we could simply syringe the food in – we were already using the syringe to flush the tube with water before and after each feed. The idea was so simple we had overlooked it! Now we were not only down to under ½ hour per feed, we were once again mobile! The second good news event was a weigh-in at my GP’s office on June 14 – 135 lbs. I had gained 15 lbs. in the first month with the G-tube!

Some strength and energy have shown hints of returning, especially in my neck and in my arms. A community physiotherapist has just done an assessment, and will help me gain strength where I need it most. My goal is to get back on my recumbent tricycle! If I make that goal, the rest will take care of itself.  There is nowhere to go but up!

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32 Comments

Filed under Exercise, MSA

32 responses to “‘There and Back Again’!

  1. Jamie W

    glad to hear you are feeling a bit better, Uncle Paul. If I could share some of my excess weight with you, I’d give it in a minute.

  2. Bob Kelly

    Hi Paul
    My wife recently passed away. She had MSA. Do you know of any volunteer groups in the Toronto area, preferrably Brampton or Mississauga.
    The last six months was very hard on both of us. If i could i would like to help a family going through this crisis. Even if it’s just to talk.

  3. Anonymous

    Paul you are braver than I could ever be. Keep up the fight!
    Brenda

  4. unlodi

    My husband has MSA and is presently in hospice. It has been so hard for my daughter and me right now emotionally since he does not have anybody else..been crying almost every night and feel like everything is so hopeless

  5. Bob Kelly

    Hi How long ago was your husband diagnosed with MSA. My wife passed away 2 months ago from this terrible disease. I know what I went through so I can just imagine what you and your daughter is going through right now. If you need to talk to someone just e-mail me I don’t mind. I know what it is like. It felt like there was no one out there who new what we we’re going through. I needed someone to talk to but there was no one. Hope to here from you. Bob

  6. Julie B

    Way to go Paul! You’re one heck of a dragon slayer! Block out the naysayers and keep up the good fight. And maybe when you’re feeling stronger again we can all go for a group ride :-)

  7. Dawn

    Hi Bob
    My husband was diagnosed in 2010 but probably started in 2008.
    We are in the Toronto area – have just got together with a caregiver
    support group but their spouses all seem to have Parkinsons rather than MSA . I have been following Paul’s blog and have found it very
    helpful but it seems that no case is exactly the same and the progression of the condition varies with each individual. My husband has severe orthostatic hypotension as well as mobility issues and urinary issues so far. We have figured out how to cope mainly by trial and error to avoid the triggers that might cause a fainting episode. Medication helps but he has become dependent on the
    BP monitor to determine if his BP is high enough perform a particular task. We have been told that it is likely that he will develop swallowing and speech problems like Paul and that eventual cause of death will probably be because of pneumonia.
    I would be interested to hear what you and your wife went through,
    to have an insight into what the future holds for us.

  8. Bob Kelly

    Hi Dawn My wife, Janet was diagnosed about 5 years ago. We we’re see a specialist a year before that with no results. Is there any way we can talk on the telephone. There is so much I can tell you that I can’t put into words. I am trying to get in touch with the Parkinson Society to express to them I can be a lot of help to them to get the word out about MSA. I’m not sure if you are aware that no one out there knows what MSA is. It was very frustrating.Hope to here from you. Bob

  9. Bob Kelly

    Hi Dawn
    is there any way we can talk. I would like to give you some insite as to what we went through with this terrable disease.Hope to hear from you. My e-mail is there. Answer me back through my e-mail.

  10. Lorie

    My husband was finally diagnosed with MSA after three years of trying to find out what was going on. He was so active and this is so unpredictable. We r really.struggling to figure out some sort of normalcy if that’s even possible. Would love to talk to someone, I have so many questions.

  11. Bob Kelly

    Hi Lorie
    Not sure if my first message went through so I an sending it again.
    I love to talk to you. If you can e mail me I will give you my phone #.
    It is very lonely out there, very little information about MSA. My wife and I felt abandoned. We felt we didn’t get the help that we needed.
    Hope to hear from you.
    Bob

  12. Dawn

    Hi Bob
    Your email address is not available or maybe I do not know how to access it
    Tried a few phone numbers in Mississauga and Brampton but
    none were yours.
    Dawn

  13. Bob Kelly

    Hi Dawn
    my e mail is be.kelly@hotmail.com my phone # is 905-792-9456
    Hope to hear from you.
    Bob

  14. Bob Kelly

    HI Dawn My e mail is be.kelly@hotmail.com My phone # is 416-994-0952
    Hope to hear from you

  15. Bob Kelly

    Hi Lorie
    My e mail is be.kelly@hotmail.com my phone # is 416-994-0952
    Hope to hear from you

  16. Lorie

    Hi Bob
    No I didn’t get the first message but now have your email and will write. Thanks for answering back.
    Lorie

  17. A. M.

    Hi Paul,

    My father has MSA, diagnosed 2 1/2 years ago but progressing slower than what seems typical.He’s about to get a pace maker to help regulate his pulse which has been dropping into the 30′s. I so appreciate checking in on your blog and your commitment to share the battle so courageously. How have the last few months been?

  18. joanne

    elo my grandad was diagnoised with parkinson disease 11 yrs ago .he didnt respond to treatment and his symptoms were getin worse.A yr ago it was confirmed he has msa,i am just wondering if any one of your loved ones had/has hallucinations?At the moment he is in a hospital because we initially thought he had a stroke.One side of his body was paralised.Through tests he hadnt but he is detearating.My grandad cannot walk and has all the the terrible horrible things that come with this disease.I am quite sure this is near the end bt trying to think postitve.one question if someone can try and answer is how do you know when it is near the end?sorry about he spelling mistakes.thanks x

  19. Bob

    Hi Joanne it is very difficult to know when the end is near. when my wife died I thought I had a lot more time with her than I did. I don’t know where you live but I live in Brampton Ontario Canada. If you want to talk about this terrible disease I can be reached at 905 792 9456 hope to hear from you. take care. Bob

  20. Elsa S. Gardner

    Hi Bob , I was diagnoses with this terrible disease on October of 2011. Would love to hear from you since you had first hand experience with your wife. I am 58 years old and female. My name is Elsa.

  21. Bob

    Hi Elsa I am very pleased to hear from you. My wife Janet was diagnosed approximately 5 years ago before she passed away. She was 66 years old. Is there anything particular you would like to know? We went through a lot. Especially the last year. Hope to hear from you. Bob

  22. Deb

    Hi Bob

    My Dad also has this horrible disease he has just been put on Hospice this morning.

  23. Bob

    Hi Deb I am so sorry to hear about your Dad. Just spend as much time with him as you can. What is his name? I would like to put his name on our prayer list at church.

  24. Tamma Wilkerson

    Hi Bob, my name is Tamma my mom-n-law has been Diagnosed with MSA. She has been seen by many neurologists and is going to Mayo Clinic in March 2013. They put her on Sinemet to control her symptoms. They doubled her dose and she says she can’t walk and has more tremors when taking it. I told her to stop taking it if it makes her worse….she called doctor and they want her to continue taking it until her body adjusts… Your thoughts??? I just want to fix it…..I want to help her in anyway I can!!
    She is one of the Good Ones!!! I Love Her!!

  25. Bob

    Hi Tamma. How long has she been on Sinemet? The problem with this disease is there in not much information out there, so therefore you have to rely on your doctor and hope he has enough background information to help you. When was your mother in law diagnosed with MSA? Are you aware that one of the symptoms is the loss of use of the legs? The best way you can help her is just to be there for her. She is going to need a lot of people around her that love her. Your family has a rough road ahead. Hope to hear from you. I care. Bob

  26. Tamma Wilkerson

    Bob,
    She was diagnosed last year!! It was confirmed last week again by another doctor. She has not been steady on her feet for a year!! Falls frequently. No balance. She has been taking sentiment for about a year. They decided to up her dose to control tremors and help with her balance. But the double dose made her worse!! That’s why I think she should stop taking it!! I’m no doctor…but if you can get around ok when you don’t take it..and you take it and you can’t get around at all….I just don’t think she needs that medicine that has more side effects than its worth..
    My opinion… I appreciate you responding so quickly. My husband and I live almost 5 hours away…we are gonna try to go home once a month to be with her. I will be there when I can to help her. I have a client that had a husband with MSA…she has told me what to expect. Her doctor told her she will lose her ability to communicate and then not be able to swallow etc. :(. Makes me so sad. I can’t fix it. :(. I will do my part to help in anyway I can.
    ????

  27. Tamma Wilkerson

    Bob,
    They took her off that medicine!! She can now walk with walker!! Going to visit next weekend.

  28. Bob

    Hi Tamma Thanks for letting me know. I hope she is feeling better. Did they replace it with something else? I appreciate that you are letting me know how she is doing.

  29. Tamma Wilkerson

    She has appt. on the 13th. to see if she will take another medication. She also will go to St. Louis the next week to speak with different neurology
    Doctors. Thank you Bob!! I hope you are doing ok!! I will keep in touch.
    Going to visit on valentines day. :). Thank you for sharing and helping all who are going through this. It helps reading other stories.
    God Bless You!! I’m going to keep you in my prayers!! :)

  30. Paul Virgil Terek

    Dear Paul’s Family,

    I am sorry to realize that Paul (my name is also Paul !) passed away in July 2012. My wife Elena passed away one month earlier on June 10/2012.
    Elena has been diagnosed with MSA about 5 yrs. earlier and her illness progressed very rapidly. I found Paul’s blog probably at the end of 2011 when Elena was already incapable to use the computer anymore and I was too busy to take care of her…
    Elena has passed through similar phases as Paul, with a lot of hardship and suffering, but also with a lot of bravery. She fought to the end and she left to us all her love and a lot of wonderful memories…
    After she passed away I had a very difficult time and even now I often have dark days. Our children’s families (two boys, one with 3 children) and Elena sister’s family were very supportive, but it is not easy to coop with the loss of your spouse. We did celebrate our 42 anniversary in May !
    I understand your feelings and you have all my sympathy…. God and our lost friends, from wherever they are now, shall take care of us now…
    God bless you all.

  31. Kelly

    My mother was diagnosed with cancer in May of 2009, throughout the process we kept trying to tell the doctor something else was wrong and we were always told, it will get better it was just the affects of chemo. She went into remission, however with the year the cancer returned and was given another round of chemo. Again we kept telling them she isn’t any better and getting worse. We have pushed for over two years seeing numerous doctors and she was diagnosed this past July with MSA. We had to move her to a nursing home as my father was unable to care for her at home in October. She has her good days and her bad days, but it is very frustrating that there just isn’t very good information about MSA out there. The nursing home she is at has never had anyone with MSA, so they are learning right along with us. There are five of us kids and we all take a day and visit her. Her short term memory has all but disappears and she has been confined to a wheelchair. They tell us they are not sure, but the rounds of chemo she had may have pushed the disease into high gear. I understand what everyone is saying about the frustrations and the difficulty seeing very healthy and active people become dependent individuals.