Slip Slidin` Away

[BillyF]

Hi all, I'm new to TP and have browsed several of the groups and already have gathered some ideas on managing this disease.

I'm 66 and all six of the males on my fathers side going back 3 generations have had full Alzheimer's by age 76. The slipping began at age 66. At age 64 I noticed that I was slipping on memory, complex problem solving, and a general inability to follow fast flowing conversations to the point I was not very effective at work so I retired while still some modicum of productivity. Now as I near 67, I am noticing significant memory issues daily, lost items, forgetting activities, losing track of time, and needing more naps.

When my grandfathers sucommed to dimentia, the 'old man's friend' took them and I intend to follow in their footsteps, but in the mean time is there anything that can be done to slow the process down? My GP keeps my body healthy, but at the rate I'm going, I probably won't know when I reach 74.

I'm blessed with a loving family who watched my dad and uncle with the disease, and my father-in-law is within a few years of full on dementia, so we can talk about it and I don't get upset when they correct me or when I forget so much.

Any thoughts on how to slow down the progression?

 

[BeckyJan]

Hello BillyF and welcome to Talking Point.

You seem very positive about yourself and I wonder if you have yet had a diagnosis. If so is there any chance that you could get medication such as Aricept (Donepezil). In the UK that is a regular prescription for someone with Alzheimers although much depends on test results and possible reactions to other medication.

In my husband's case I do believe Aricept slowed down the progress of his illness and there were many quality years before the very last stage. I believe it is worth you discussing this with the GP.

I hope you find the Forum helpful.
Best wishes

 

[BillyF]

Thanks Jan for the welcome and the tip about Aricept. I'll definitely discuss it with my GP. I always have been positive in life and even though my parents refused to discuss the disease, I have been open about it with my family and close friends. It is what it is and everyone gets to complete the circle of life. Being angry doesn't work for me.

Sometimes it is amusing to me, like reading or watching something and enjoying it totally, only to discover that I had read it a month or so earlier. I do regret it (embarrassed) when I just don't remember people that had been important to me and vice versa. My wife and I use notes so I can remember to do things, that works pretty good.

Bill

 

[JayGun]

Hey Bill,

We believe that Aricept has slowed down the progression of my mother in law's Alzheimer's, but the other thing I'd like to recommend is a "use it or lose it" attitude. Focus on what you CAN do, and keep doing it for as long as you can. We play cards with MIL to keep that bit of her brain active for example. And she does as much for herself as possible. We think keeping physically active helps her, so she does most of her gardening and housework herself to keep busy and to keep things normal. She's 83 now, diagnosed for a year, but showing signs for several years before that. (It took us three years to get get her to a doctor, and half a year to get a diagnosis.

All the best lovely. You're not beaten yet. xx

 

[BillyF]

Thanks Jay,
Your MIL is fortunate to have you and your wife in her life. God Bless. I will follow up with my GP.

I too prescribe to the 'use it or lose it' philosophy. We have executed, planned and scheduled bucket list trips and activities through next year including a camping trip with my grandkids from Seattle to Alaska, and back with wife meeting me in Anchorage for the trip back; And several other adventures. It is clear that I have about 5 good years left and we going to live them to the fullest. If medicine can extend it, more the better and I intend to work that fully. I have had an unbelievably full and rewarding life and have had very close friends expire too early in life, so every day to me is a blessing. I believe it is my responsibility to make each day a worthy day for my family and me.

I truly appreciate being able to talk with you and others who are able to see with a clear mind what is happening. I want to stay engaged as long as possible and don't mind being corrected or reminded of reality. BTW, my dreams seem to be progressing back in time also. I've seen people that haven't been in my life for 3-4 decades and don't see current people. The nightmares I used to have infrequently 3 or more years ago have all stopped and the dreams now are all good, but quite crazy. They disappear fast, so I tell my wife about them when I wake up; We get a good laugh.

Peace ,
Bill

 

[Izzy]

Good morning Billy and welcome from me too. I do admire your positive attitude and think you are right to grab every day and live it to the full. That is certainly the approach we have taken and still do take.

I agree with BeckyJan that it would be worthwhile discussing medication with your doctor. My husband was diagnosed with Alzheimer's in 2001. He was 71 then so older at diagnosis than you are. He was on Aricept for many years and I do believe that this slowed down the progress of the dementia. Eventually he was put onto Exelon (Rivastigmine) when the memory clinic doctor thought the Aricept was no longer helping him. He was on that for a few years. He is now on no medications and finally his dementia has progressed into later stages.

During the 13 years since diagnosis we have made trips to India, the Middle East and USA as well as other holidays in Europe. I am so glad we did this. As time went on I had to plan things a little differently and eventually use airport assistance etc but I'm so glad we did it all. Our last trip abroad was almost exactly a year ago, to Italy. Since then my husband has had a lot of infections etc and I think it would now be unwise for us to go abroad now. We still go out and about in the UK though. I'm typing this in a hotel in Edinburgh. We spent the night here having been to a Scottish Opera performance of Madama Butterfly. My husband won't remember it all today but boy did he enjoy the experience at the time.

I wish you and your wife every success with your adventures/trips and your bucket list. I hope you will keep us posted about them on TP!

 

[BillyF]

Izzy,

Thanks for the welcome and your note is really encouraging. We didn't use medications for my father and he became house bound after ~3 years and I was expecting the same, but I still have time before the clock starts. I see my GP fairly soon and will discuss it with him. So far he has had me use supplements which do a pretty good job, but we noticed that I'm slipping noticeably more this year over last.

Your adventures around the world sound wonderful. About the only place I haven't been is Antarctica and just yesterday I got an invite to go with two of my friends. I'm looking hard at that one. I did a 16 tour of China last fall, buddied with a MD out of London and we had a wonderful time.

Your husband was a good picker. God bless.

Bill

 

[Izzy]

Izzy,Your husband was a good picker. God bless.

Bill

Must be the name - he's a Bill too!

 

[BillyF]

... it is thought that maybe Vitamin B supplements may help to delay memory loss.

Thanks for the note Piph. I did a web search on 'Vitamin B Complex for Alzheimers' and found quite a few reports about a study published last May. Looks promising, so I will add that to my consultation with my GP. He is up to date on nutritional supplements and hasn't steered me wrong yet.

bill

 

[JayGun]

Thanks Jay,
Your MIL is fortunate to have you and your wife in her life. God Bless. I will follow up with my GP.

I too prescribe to the 'use it or lose it' philosophy. We have executed, planned and scheduled bucket list trips and activities through next year including a camping trip with my grandkids from Seattle to Alaska, and back with wife meeting me in Anchorage for the trip back; And several other adventures. It is clear that I have about 5 good years left and we going to live them to the fullest. If medicine can extend it, more the better and I intend to work that fully. I have had an unbelievably full and rewarding life and have had very close friends expire too early in life, so every day to me is a blessing. I believe it is my responsibility to make each day a worthy day for my family and me.

I truly appreciate being able to talk with you and others who are able to see with a clear mind what is happening. I want to stay engaged as long as possible and don't mind being corrected or reminded of reality. BTW, my dreams seem to be progressing back in time also. I've seen people that haven't been in my life for 3-4 decades and don't see current people. The nightmares I used to have infrequently 3 or more years ago have all stopped and the dreams now are all good, but quite crazy. They disappear fast, so I tell my wife about them when I wake up; We get a good laugh.

Peace ,
Bill

I admire your positive attitude Bill. I like the idea of planning adventures a lot, and I'm so envious of your Alaska trip, I can't tell you.

Glad you're enjoying your crazy dreams. The brain is an amazing thing, isn't it.

 

[BillyF]

Vitamin B supplements are helping me

Several of you mentioned Vitamin B supplements and a 'recent' study. I found the study and several critiques, positive and not so much. It then dawned on me that several months ago, based on the "scientific" declaration that supplements have no value, I had stopped taking Multivitamins For Seniors which had B6, folic acid, and B12, all called out in the study, although in lesser dosages. I started back on the multivitamins and added a Super Vitamin B Complex. It's been 2 1/2 weeks and the family has noticed that I'm not so ditzy, but still warrant double checks. I have an improvement in cognitive abilities also. I'll continue taking them at least until I see my GP.

Thanks for the tips.

Bill

 

[jimbo 111]

B Vitamins Side Effects

.Just a word of caution if you are intending to buy 'over the counter'

B Vitamins Side Effects
B vitamins are water-soluble; much of the excess of these vitamins gets excreted through urine. If taken in large doses, however, vitamin B complex can have negative side effects. Side effects include gout, high blood sugar and skin problems. Overdoses of B vitamins can lead to heart and liver complications, and high doses of vitamin B3, or niacin, can cause vision problems, nausea and vomiting and worsening of stomach ulcers. If you are on chemotherapy, high doses of folic acid can interfere with these drugs

 

[Trisha4]

Hi Bill
The most positive thing going for you and those around you is your participation in your situation. My husband, aged 67, is the same and it makes things so much easier. Many carers seem to be dealing with loved ones who deny their situations. My husband was diagnosed with Alzheimer's about 15 months ago although we were aware of issues for some time before that. He was put on Aricept which held things for about 6 months but there is probably a slow decline since then. We are still able to do lots of things together and still enjoy travelling - Panama in January, Greek Islands in May and off to mainland Europe in our motorhome next month. We agreed to my having lasting power of attorney and put that in place as soon as he was diagnosed.
I have just applied for attendance allowance for him (not means tested) and if he gets that we can apply for a reduction in council tax.
We try to live by the mantra of not spoiling today by worrying about tomorrow. We also try to find strategies to get round problems we encounter and inevitable changes. We tell people which we find makes interactions easier and we accept help eg discussed with librarian at our local library husband finding reading more difficult now although he's been an avid reader all his life. They ordered in the Quick Reads series for him.
All the very best to you and try to keep positive!

 

[Trisha4]

Good morning Billy and welcome from me too. I do admire your positive attitude and think you are right to grab every day and live it to the full. That is certainly the approach we have taken and still do take.

I agree with BeckyJan that it would be worthwhile discussing medication with your doctor. My husband was diagnosed with Alzheimer's in 2001. He was 71 then so older at diagnosis than you are. He was on Aricept for many years and I do believe that this slowed down the progress of the dementia. Eventually he was put onto Exelon (Rivastigmine) when the memory clinic doctor thought the Aricept was no longer helping him. He was on that for a few years. He is now on no medications and finally his dementia has progressed into later stages.

During the 13 years since diagnosis we have made trips to India, the Middle East and USA as well as other holidays in Europe. I am so glad we did this. As time went on I had to plan things a little differently and eventually use airport assistance etc but I'm so glad we did it all. Our last trip abroad was almost exactly a year ago, to Italy. Since then my husband has had a lot of infections etc and I think it would now be unwise for us to go abroad now. We still go out and about in the UK though. I'm typing this in a hotel in Edinburgh. We spent the night here having been to a Scottish Opera performance of Madama Butterfly. My husband won't remember it all today but boy did he enjoy the experience at the time.

I wish you and your wife every success with your adventures/trips and your bucket list. I hope you will keep us posted about them on TP!

Izzy your posts are inspiring. They make me feel humble as we are not dealing with the issues you have progressed to but also so hopeful and encouraged as you both seem to have been able to enjoy things for a long time after diagnosis. Thank you.

 

[Izzy]

Goodness Trisha! Thank you! x

 

[BillyF]

Alaska trip update

Hi all,
Several of you asked for updates from me as my family and I progress with this condition. I just completed a 3 week adventure with the two grandkids from Seattle, through British Columbia, NW Territories, Yukon, Alaska and back through BC. I drove my Ford Excursion packed with tent camping gear and the kids. Our first night in Alice Lake Provincial Park we had two black bears come sniffing our tent after midnight. Thankfully we had done everything right and they moved on after about 5 min. I didn't wake the kids, but I was sweating bullets with bear spray in hand if they got aggressive. In all, we saw 18 bear going north and no more close encounters although we found fresh grizzly tracks near our campsite at Liard River Hot Springs Prov Park. The 12 year old granddaughter was wonderful and when I would forget something or start to make a bad decision, she would set me straight in the most loving and nondepreciating manner. We met their parents and my wife in Anchorage on day 11 and visited my cousin for a wonderful weekend on the Kenai Peninsula. My wife and I then dropped our daughter and family at the cruise ship and we continued the adventure, using motels, on a different route through BC to Vancouver where we met our cruisers for the last leg home.

Naps during the day were required and we carried our food for lunches so would stop somewhere beautiful and take a 20-30 min nap and the kids napped too, or read their books. If I didn't initiate a nap, the granddaughter would when she saw me getting sleepy.

I'm thankful that we made the trip this year. I doubt that I could safely do it next year. Since we are open about my 'slipping', it is not a big deal to question or suggest a different course.

This was a trip of a lifetime for the grandkids and me. Something that I had dreamt about ever since they opened the ALCAN hwy to civilian traffic in 1958.

My thanks again to those that suggested Vit B supplements. My mental state is better than it was 6 months ago with the resumption of multi-vitamins and ginkgo-biloba, and the addition of a B-complex supplement. I also take six 684 mg omega 3 fatty acid fish oil capsules daily to control inflammation, plus CoQ10, C, and D supplements.

Bill

 

[jeany123]

Wow Bily it sounds like quite a adventure you had there,

It is something that you and your grandchildren will remember for the rest of your lives,

Best Wishes Jeany x

 

[BillyF]

Fall update

My wife and I just completed a few more bucket list adventures. We took a cruise from Boston to Quebec City and back with stops in 10 different locations along the way. The Maritime Provinces are just beautiful and we could have stayed in Bar Harbor, Maine forever. The cruise ship was going to Bermuda next, so we stayed on for that trip and had the unforeseen pleasure of 18 hours of hurricane force winds and seas. The ship and crew kept everyone safe, so being able to see and hear the rage was spectacular. Winds at 110 MPH, with the high gust of 150 MPH, and seas up to 50 feet. Glad we were on Deck 10. Bermuda had just weathered the storm, but was in good order. A beautiful island nation we thoroughly enjoyed.

My short term memory is getting worse, so we have stepped up cross checks and notes. My lovely wife keeps me on track most of the time. Mostly a task deferred is a task forgotten. Thank goodness I retired from work when I did. I envy my peers who are still productive, but thankful that I am able to spend more time with my family and avoid the embarrassment of failures at work. It is what it is. Everyone around me is gracious and helpful without being patronizing, at least as much as I can tell. I see my GP next month and will explore it with him some more.

I was informed about Aricept on this forum and we were able to get my father in law on that regimen. He is now engaged in life again, with no side effects so far. What a huge turn around for him. Thank you Izzy. I'll be ready when my GP says it is time.

Next on the agenda is our annual Thanksgiving feast. We'll have the extended family (25+-) at our house for the pot luck style feast. Thank goodness for recipes since I've forgotten how I roasted the turkeys for the past 40 years.

Planning a 21 day RV trip to Yellowstone National Park with the grands next August, and the inaugural cruise of the Norwegian Escape from Southampton to Miami in Oct. Always dreamed of a transatlantic passage. After those two adventures, we'll restrict our travels to about a 300 mile radius of home.

Bill

 

[Izzy]

Oh BillyF. You're travels sound wonderful. I would love to see some of the places you describe. My dad was on the Atlantic convoys during WW2 and spent some time (not sure how much) in Bermuda. We used to love to listen to his tales.

I wish you well for continued health to enjoy further travels - even if they are within a 300 mile radius!

 

[halojones]

Hi BillyF, welcome to talking point, and what a positive attitude you have..I take a liquid B supplement and a liquid Vit D( under the tongue) and it really helps me...If you are lacking in these, then they will help..., it is great that your doc believes in nutrition as it is extremely important..It will be all about the quality of your time now, I wish you well with your plans and family...x