ALS and front temporal dementia

leegardens · 04-20-2008, 01:58 AM

Hi! My 59 year old husband has been diagnosed with bulbar ALS and Frontotemporal dementia. He started with slurred speech and a thick sounding voice in October. When we saw the neurologist on Jan. 3, the Doc saw fasiculations on my husband's upper arms. Since then we've had all the tests and the Doc told us ALS. J searches for the right words to use and gets confused some times. His behavior and personality have changed a great deal also. An osteopath told him that he had a problem with his spinal fluids and J thinks that is what is causing his tremors.

We went to Emory's ALS center and they confirmed the diagnosis on March 18 and told me about FTLD. They prescribed Rilutek and a bipap. We just saw the neuro psychologist last Monday and she confirmed the FTLD. According to them the dementia will get my husband before the ALS does. He has fasiculations all over his body and is really fatigued all the time. He won't use the bipap for more than an hour because he claims it gives him a sore throat. He has the full face mask because the other face mask bothered his nose too much. He thinks if he gets rid of the fasiculations then he won't have ALS. He doesn't even know what ALS is or how it progressies. I asked the psychologist if my hubby would have episodic dementia or if it would be full blown, full time. She told me the latter. I don't think that I should tell J what to expect. I asked him if he wanted to know and he said no, just tell him when he has doctor appointments. It seems like we got hit with a double whammy- ALS and dementia. I keep telling myself it will be a blessing for him not to know what he'll be going through with ALS. He doesn't know about the dementia either.

So here's my question- we have been planning to go to Italy for a month for a year and a half. We sold our business and moved to be close to our daughter and the grandbabies, this happened before he became sick. We were going to travel and do all the things that we were too busy making a livinig to do. J still wants to go to Italy and I want this trip but I am afraid I could be making a big mistake- more because of having a health issue with the ALS- breathing or choking- than with a problem of doing too much. There are also the personality changes to worry about. I know his type of ALS will progress rapidly. I purchased trip insurance along with our tickets- this was before the diagnosis. Does anyone have experience with front temporal dementia? Should we go and just take it easy? It has been emphasized to me that the dementia and the loss of 'executive function" will make the trip more difficult. I will have to take away his car when we return because his judgement will become questionable. Is this a bad idea?

CindyM · 04-20-2008, 07:21 PM

Hello Lee. I don't have a lot of advice for you but we have had one or two members with both conditions and maybe they will have sone experience with traveling. I would like to welcome you to our little corner of the internet, though. It does seem that you've been handed a double whammy. One condition alone is a lot to handle alone. Hopefully you have family and other supports nearby. Cordially, Cindy

judylyne · 04-21-2008, 10:12 AM

hello Lee My husband was diagnosed in oct 07, He is 60 years old and has the dementia and loss of use of his arms. He can't swallow anymore. We wen't to Florida for the winter but he lost 50 lbs while we were there and had to be admitted to the hospital as soon as we got back. He now has a feeding tube. I just wanted to let you know that you don't know how fast this will progress. I hope it works out for you to go on your trip and I know the grief you feel If I can help please let me know. Judy

sharonca · 04-21-2008, 12:59 PM

Lee - my mother had FTLD in the form of Pick's disease - not ALS. It was not fast progressing in that she lived about eight years with it. What it did for her was she lost memory first - could not do the things that were routine for her previously - fix a meal - plan a menu - figure out what you do with toilet paper. She also lost speech fairly early. Coordination also was an early problem. She was always very sweet and not a problem behavior wise. The speech issues are not like they are with ALS. FTLD people lose it from the brain not the tongue and lips. They can't think of the words to say. I didn't travel anywhere with her except short little trips - it was like taking a child into a store or to get something to eat. Recently I discovered that Pick's disease runs in our family - very rare. There are quite a few different types of FTLD and recently it has been discovered that some forms (FTLD-U) have a protein in common. There have been some discussions about that issue on als.net research forum.

I wish you the best if you decide to travel.

Sharonca

keptfreeinhim · 04-26-2008, 07:17 PM

Lee,

My heart goes out to you. I know so much of what you are dealing with. I only posted once before on this site and it was in regards to the two diseases your husband has. My husband had dementia since he was 45 and then at the age of 58 he began showing ALS symptoms. The dementia was very slow in progressing until around 2006 when it began progressing faster. We began noticing speech and swallowing difficulties towards the end of 2006. In the spring of 2007, his wrist was becoming affected. I could see my husband slowly slipping away from me and it was horrible. I can't take up the space to share too much. I hope to begin a website or blog soon to try and encourage others who have to walk through such a nightmare. Dave was diagnosed with ALS in July of 2008. At that time his upper body was being affected by the fasciculations. He went to the ALS clinic in Grand Rapids, Michigan in October. They confirmed the diagnosis of the bulbar form of ALS, but basically said the ALS was throughout his entire body at that time and they were only giving him six to eight months to live. My husband passed into the presence of His Lord on December 6, 2008. He never understood either of the diseases. Because of the dementia he couldn't understand the limitations he needed to be under with the ALS.

I understand the need to get away and to take the moments you can for peace, joy and relaxation. I believe with both diseases against him you should think really seriously about the decision to go so far from your family, doctors and your comfort zone. Both FTD and ALS cause the victim to be unaware of their own actions. Will you be able to control his actions in a strange environment? My husband went to daycare a couple of days a week last summer. It was difficult to even transport him the forty minutes back and forth to the daycare. I couldn't stop and run any errands when he was with me. He didn't understand he needed to stay in the car and would try to get out even though it might mean he would fall without my assistance. Taking him to the bathroom was difficult because he didn't have the use of his hands any longer to be able to pull his pants up and down. I couldn't go into the men's bathroom with him and he wouldn't go into the ladies with me. Very few places have family bathrooms.

I believe without the ALS my husband would still be alive. FTD patients can live many years. My husbands father and his brother (twins) both had a similar early onset dementia and they lived until they were 67 and 68. With the ALS my husband died at the age of 59 1/2. I'm surprised the doctor would tell you that the dementia would take your husband first. Generally the ALS is what causes the body to shut down. It is a disease that literally eats away at the persons body. It is horrible to watch. I'm sorry this isn't a very hopeful answer to your questions. I know though there is joy and laughter in the midst of the pain. Know that others understand the path you are walking now. Please feel free to email me directly at keptfreeinhim@yahoo.com if I can be of any further assistance.