Hi, my husband is 56 years old, PD for approx. 9 years. Sometimes he wakes up in the morning and then has to go back to bed an hour later. He sleeps most of the afternoon away. His quality of life is really bad. He has gained so much weight because of his inactivity. I read all these posts about people exercising and it just sounds like a fairy tale at this point. He can't lift his head up, he just turns "off", like a light switch, and Off times don't really correspond with med wearing off. He is on Levodopa/carbidopa with endicopone, but that's it. He has tried modafinil, concerta and caffeine pills all under neuro supervision, none do much, just make his tremor worse. He is trying to work part time, but I'm not sure this is do-able. He was diagnosed with sleep apnea and uses a cpap machine at night. He is so over weight now because he can't wake up to do anything and he has "apathy", no motivation to do anything, and no he is not depressed, tried anti depressants and he slept even more, he says that he feels nothing...doesn't have the strength to move. I told the neuro this and he said, oh, people don't get apathy until they are much older....ughghg...He looks like someone who is dragging a 100 pound weight around all of the time. Is this just PD or is this something more sinister?
Sleeping like a baby...: Hi, my husband is... - Cure Parkinson's
Sleeping like a baby...
My heart breaks for the two of you! The way he is living has no good outcome. He is depressed, apathetic and unable to move or rise from his bed because Parkinson's is stealing his very life. I have been dx now 7 years,. ..a nurse, been around, know lots.... the first time someone said to me,. Parkinson's doesn't kill you ....you can live pretty much a normal life,,,I thought, "that's great news"! But that's not true for me or for many others. Despite Herculean effort I am losing faster than the usual PP. I tried to let God have me from my soft, sweet safe bed.....at 129 pounds and no blood potassium levels, I had a far better chance of success than the man you love. I got the message from my doctor, managed to chew 2 potassium pills and have tripled my exercise , supplements and study. He has to decide to rise from his bed and and take his mind and body back. I suggest he start with John Peppers hard and fast walking program. I am glad you posted. He will get support from wonderful people,. Prayers and love to you both!
A good candidate for HDT (High Dose Thiamine hcl) if you ask me.
Best of luck
Yeah, I contacted Dr. C, but he quit the week that I emailed him...he was on it but not the super high doses that I know others are on...may need to look at that again. thanks.
Keep looking into thiamine. It’s done wonders for my husband !
Good advice! We have to summon super human energy!
Hi Icequeen10, what is potassium for?
and which supplements and exercise are you taking that help?
Do you do John Pepper's fast walking?
Please tell me what helps you.
Thanks.
You need to have blood potassium levels checked BEFORE you supplement. Too much potassium can cause fatal heart arrhythmias.
I take 100 mg potassium citrate per day. I have kidney stones and chronically low potassium levels. I get my blood checked to be sure I stay within therapeutic levels.
is low potassium related to PD?
Thanks.
I don't know. It's worth looking into. Low potassium may be indirectly related by creating an environment where a person is more vulnerable to environmental toxins. Or it could be that low level toxin exposure over time depletes potassium until the body reaches a tipping point.
thanks
Check into High Dose Thiamine Therapy!!! You buy the vitamin (B1) online . My hubs just started ! We get it online .
Hi, thank you, can you send me a link to the one that you buy?...lots of info here but getting overwhelmed.
I buy Vitacost 500 mg from vita cost . Just try searching it should come up. Let me know!
Thank you for your kind words...I got him out walking two nights in a row, but just around the block, I will keep trying.
Hi, I do NOT have PD. I was the caretaker for my son who was dx with PD for three years.
I would encourage you to seek a 2nd opinion with another neurologist.
Hi, We've had four, they all sucked. In Canada which doesn't seem to attract the brightest and the best unfortunately. A two year wait for the first visit. A pathetic system.
All too common. Do you have kids? Who pays the bills? If you have kids, then they are the motivation for living. I know that mine are my lifeline and my reason for living. There’s hope. Have you had him see a therapist?
Hi, yeah, a neuro psychiatrist, swears he is not depressed, still enjoys little things when he is awake. Not at all the neurotic type, like me, LOL. It's just like a light switch turns him off, seems very physical rather than psychological to me. He is never super sad or upset, sometimes stressed but from the tremor and PD, never stressed before PD. If I could get him moving and get some weight off I think it would be a great start. I dragged him around the block for two nights in a row for 5 minutes! Wish me luck...
I’m sorry you and your husband are going through this...... I am 55 dx 6 years ago and my cd/ld make me very fatigued and tired I take 6 cd/ld 25/100 , Azilect in the morning . I work full time so my afternoon meds I break in have and take every couple hours with a half of Comtan and that way it’s not all one big dose which would make me fall asleep at work. I am a runner , so exercise has always been a big part of my life and that does help the tiredness as well. I’ve discussed this with my neuro and he is totally on board with what works for me.. also no matter how tired I get , I have dystonia so after too long laying down I get uncomfortable. Maybe , with your drs ok try splitting his meds in half in the afternoon and just give them in sooner incraments. Take care and let me know how things are going . Karen
Hi, thanks for this. The weird part is, his "meds" don't always give him the lift that everyone talks about, sometimes they do, but yesterday he slept all day, got up at 6:00 p.m. (I fed him meds at regular intervals) Azilect made him happy but compulsive behaviors developed. He looks sooooo good in neuro's office, unless they "see" what is happening they don't seem to accept much input. Video of a large sleeping man isn't very dramatic either.
One way to lose weight quickly is through intermittent fasting. I lost 70 lbs in a year. You can also practice “tough love “ like my wife does.
I remember your previous post. You were just as desperate then as you are now. 
Not having heard from you on your husband's progress, I assumed he had improved. Anyway, I am so sorry you haven't been successful so far with your husband's condition. Perhaps it's time for a second opinion. It might not be PD.
Good luck, my heart goes out to you and your husband.
Hi, things did get a little better...for a while, but now back to worrying. I dragged him around the block for two nights in a row, for 5 minutes! He has seen four neurologists, they are all useless in my opinion. I don't think that Canada attracts the brightest and the best. No tests, just hand out the Sinemet and move on.
Same here. Neurologists and MDSs don't spend enough time with their patients, 10-15 min consult, meds prescription and on to the next patient. Good luck to both of us. . .
I think I could be a Movement Disorder Specialist and treat patients with PD, looks easy. See patient for 5 minutes, analyze foot tapping, gait and hand movements, ignoring all cognitive functioning tests of any kind. Ignore concerns of spouses. Show a total lack of concern for quality of life or ability to maintain employment. Refill prescription for Levodopa/Carbidopa and send everyone on their way.
Can you get to Mexico? Medical tourism is big business, you could stay in El Paso, TX (US) and day trip to Juarez, Mexico for appointments. It may even be covered by your health insurance. Can't hurt to check.
This sounds amazing, I can't get him out of bed, so, not sure how I would get him from Canada to Mexico...but would loooove to do this. I have heard about these medical vacations, the whole family gets to hang out on the beach while patient receives every test imaginable supervised by the best minds in the entire world all working together on behalf of the patient...maybe that was just a dream. We would have to win the lottery first.
Has he considered DBS?
No, but I have...worth considering for sure. Scary...but I read about some good results.
I’m doing it July 11th. My mom and sister both did it and had great results. My neurologist said I would get 85% of my movement back. I’m scared but going for it.
Wow, keep us posted on your progress. Scary but exciting. Where do you live, if you don't mind me asking?
In the Bay Area, Mill Valley. I’m doing the surgery at UCSF
Have him sunbathing outdoors instead of sleeping indoors. His circadian rhythm is off I am sure and that is the best way to reset it.
Hmmm.....I'll try to roll him out there when the rain breaks, ha! Vitamin D maybe? I bought him one of those day light sun lamps...but maybe a better one would help. Thanks
It is more than Vitamin D. It has to do with melatonin, circadian rhythm, brain derived neurotrophic factor, serotonin--the sun does a lot for us besides Vitamin D.
Hi
I'm sorry to read this about your hubby, I must ad to icequeen10's post, your man has to get up and try to move. It sound counter intuative to what his body is telling him to do but it does work, maybe prior to walking as noted, get some workout bands or kettle bells or a small step. I mean this in all respect but your hubby needs to get used to the extra weight before he can shift it, to explain as it's built up from inactive actions, he will need to get or rather build on his strength (kettle bells, workout elastic bands) thru basic repetitive movements, this will help twofold actually 3fold, repetitive movements will strengthen his body to progress to slightly more rigorous actions e.g. vigorous walking , 2nd it should help the brain to produce more happy juice in the brain (dopamine) which 3rdly will inturn give him more confidence to move and to fight
Best wishes
Hi, I recommend you try Hardy’s daily essential nutrients, and make diet changes eg no sugar, no gluten, no processed food or additives, organic food. My husband was like yours a year ago but his apathy and anxiety has totally gone now and he is back to his old self. Please have a read of my profile as it may help. It might be he is desperately missing some nutrient. Hope it helps. It’s a scary place to be in😪
Very true!
I had a terrible problem with exhaustion, sleeping 16 hours a day. My neurologist
had blood test administered and my B6 level was extremely low. She instructed me to take 100 mg of B6 daily. After about two to three weeks I returned to more normal sleep. You might have his B6 levels checked. Good luck.
Will do, thank you.
My husband was low in B12. This vitamin is directly responsible for energy. Get his level checked through bloodwork. I suspect he is also low in vitamin d if he doesn’t go out. This vitamin does all kinds but definitely contributes to mood. I don’t know when he last had bloodwork but I would request ASAP. I asked hubs neuro to check b 12 and he gladly did . And he prescribed 1000 mcg b12. We get the methylated b vitamins, they are absorbed better especially if a person had MTHR mutation. There’s a test for that too. It can affect how well an antidepressant works.
So please get the bloodwork!!
And please look into the High Thiamine HCL therapy!!!
Fatigue so common with PD.
He sounds depressed to me. Feeling “nothing “ is also a symptom of depression. It’s finding the right one. But try the other stuff first!
Blessings
Carrie
Got it, thanks.
How is his thyroid level? If it's low or he is on Synthroid, which is notorius for keeping people in a hypo state, it can cause extreme tiredness. I have no thyroid gland and take a combo of natural thyroid hormone and Synthroid and it works wonders. On Synthroid alone it didn't work as well.
I have an ongoing fight with apathy. It is NOT depression, as you commented
(glad to read that).
When we have PD there is a big drop in amino acids. I, for one, HAVE TO, take a combo of them daily for the apathy, mostly. Without the daily dose of them I sink like a stone and several times tried going without them a week (to make sure it was not a placebo effect) and just slept, no motivation. 5HTP 100mg is a must, tyrosine 500 mg. (important!), B1 50 mg, D3 1000, B6 50mg, B12 1000mcg (level should be checked), N-Acetyl-L Cysteine 600mg, L-Carnitine 500mg, L-lysine 500mg. Try these for starters. It took me awhile to be able to swallow so many but I put them all in a dish and take a few at a time. If he is on Synthroid already have him take selenium with it as it helps with absorption. Also it must be taken 2 hours apart from levodopa. I am a functioning human being only when I'm on these and not usually a pill taker.
Useful information! My husband had total thyroidectomy and his hormones are in the low or just above normal. He was on Synthroid, but didn't do much good. Our compounding pharmacy pharmacist with our family physician guidance compounded T4/T3 hormone. Still no success with his TSH being 0.1 (ref range 0.5-4.5). May I ask what kind of natural thyroid hormone are you taking? Thank you!
I had a total thyroidectomy and take 50 mcg Synthroid and in Canada the pharmacy sells Thyroid ERFA. I get a 30mg pill and take 3/4 one day and 1/2 the next day alternating to keep the TSH near 1.0 . Had cancer so am supposed to keep TSH low. I don't change the Synthroid amount as it keeps things stable. Had the surgery in 2012 and without the gland it was hard to stabilize levels until I tried this.
Thank you. They couldn't determine if the nodules were cancerous and they advised/recommended total thyroidectomy. BIG MISTAKE! Magnesium deficiency should fix the problem, there were no cancerous nodules. Anyway, the pharmacist is still waiting to hear from our family doctor as to the new compounded prescription!!
Good no cancer but wondering why they took out the whole thing if it was uncertain. Those kind of surgeons should experience what it's like before recommending that. It's a major life change and I think it was one of several traumas that brought on Parkinson's personally. Hope the new compound helps.
Wow, okay, worth a try...I can't get him to a GP for blood work, so everything is a challenge.
"Also it must be taken 2 hours apart from levodopa."
He is taking it 1/2 hour apart from Levodopa according to our pharmacist. Isn't it enough time? Did your doctor say you have to take Synthroid 2 hours apart from Levodopa? Thank you!
I read it somewhere on internet and experienced a huge rise in TSH before finding out. Went from 3.0 to 13. Now that I do the 2 hr. wait my TSH is back to normal.
Are they sure he has Parkinson's Disease? I would start there with a new doctor. If you are sure then do your best to take the good advice given here.
Hard to get a new doctor in Canada. It was a two year wait for the one that we have...but we have seen four neuros over the past 10 years. They all seem useless to me. Canada doesn't seem to attract the curious types. They give him Sinemet and send him on his way, every time, no tests, no advice, no blood work.
The US docs in general are the same - pass out the Rx/s & put you out to pasture. Big pharma runs the show.
Hi,
This sounds real familiar. I am 60; I was diagnosed at 55. I am on c/l, rasagiline and gabapentin. I take my meds in the morning and then I could fall asleep an hour later after 2 cups of coffee and could sleep all afternoon. If I get out in the morning and go hiking, biking or golfing, I can keep myself going, surprisingly. If I was home I’d be sleeping. I also was diagnosed with sleep apnea. I suffered with a life of snoring as well. But the Cpap was so uncomfortable because I was all stuffed up. I heard through a friend that an ENT had fixed them, so I got my GP to get me an appointment and found out I had a severely deviated septum. Long story short, he operated and cleared and straightened both nostrils. This made an amazing difference! Shocker, I had been asking about my apnea for 20 years, nothing happened until my Parkinson’s diagnosis and then they got interested but only for Cpap. Good luck!
Thanks for this...I think a weight decrease would really help him with his sleep apnea...but will consider the deviated septum check, if I could only get him to a doctor...ughghhg.
Absolutely must wear CPAP/ Bipap. Cymbalta really helps me from feeling like I wanted/needed to go back to sleep after breakfast!
Hardy’s daily essential nutrients has most of the other nutrients mentioned above in one product. It’s easier and although expensive when you look at the cost of buying each thing individually it is actually cheaper. It is worth it to have my husband back!
Hi, thanks for the reply. Hardy's, where can I find this?
Where are you living? It is Canadian. We are in New Zealand and get it through naturezone here. You can contact the Canadian free help line and chat to them about suppliers near you. Their product specialists are lovely and so helpful. The cost of the supplement includes as much advice as you need and follow ups to check he is ok.
Please tell me exactly which Hardy's to get. I am Keen to use this!
Hi, he takes the Hardy’s daily essential nutrients
hardynutritionals.com/produ...
And the greens and probiotics
hardynutritionals.com/produ...
And when he was feeling extremely anxious he also took their inositol powder but now he has his anxiety under control he has stopped that but has it as backup just in case there is a very stressful situation.
Ring their Canadian help line which is free and ask to talk to a product specialist about how to order it. They have a process where your GP has to be on board with it as it works so quickly people on anti depressants etc can be over medicated if they don’t reduce their pharmaceuticals so they help you through that.
Let me know how you get on taking it as I am keen to see if other people have the same dramatic success. If it works for other people too it would be good to have more people recommending it too to get the word out so more people can be helped.
Hello Icequeen
Have you tried Hardy’s? I appreciate Laj12345's comments, but still would like to know if anyone else has had as good results from using them.
Thank you
i am sorry to say that i have not tried them yet.
The body is designed to heal itself, but to do so it must be provided with the appropriate tools, and those tools are not found in medications, which are useful only to temporarily relieve the symptoms. The needed tools for healing are only available from natural food sources. I am 75 years old and was diagnosed with Parkinson's about 15 years ago, and have never suffered from most of those symptoms that you have described, and I believe this is the reason why:
Having been active in the natural healing movement in So. Cal. from the 1970's on, I have been aware of the importance of nutrition in healing, and the potential damage of so many of the drugs that are prescribed. So, while I could see the therapeutic use of the C-dopa L-dopa to control the symptoms, I knew my body and brain needed nutrients to overcome the condition which I was experiencing.
The simplest and easiest way to provide those missing nutrients was to drink smoothies every morning and afternoon. The most essential ingredients for such smoothies are things high in antioxidants, like berries, apples, etc. and nutrition dense things like raw cruciferous greens, and to enhance the nutritional value even further, I added powdered alfalfa leaves, kelp powder, turmeric powder, plus I would experiment with other powdered substances which were recommended and of good report, like cinnamon, ginger, cacao, barley greens, etc., all of which are available in 1 lb. Bags, and can be ordered at local health food stores and over the internet.
In putting these smoothies, I use about a heaping teaspoon of each of these powders, so they don't have much effect on the flavor. The berries and other fruits should dominate the flavor, but you will need to experiment to achieve the flavor that suits individual tastes.
Anyway, I have faithfully followed this regime from the beginning, and I believe this has helped to minimize the PD symptoms, as I never have to medicate during the day, only at night, so that I can have more effective sleep. It also has benefited the condition of all of my systems and bodily functions, so that it seems I have become immune to any infectious disease (including cancer?)
Of course, the time it takes for this therapy to restore the health of the individual depends on the condition of each person, but I believe that one of the early benefits is the restoration of the mental and emotional balance. In other words, alleviation of apathy, anxiety, depression, hopelessness, negativity, etc. and the enhancement of joy, ambition, anticipation, and positivity.
As these changes take place, you will find the patient gradually becomes more cooperative and willing to participate in the healing process.
Hmmmm...my husband is a smoothie maker for the family when he is awake...berries and yogurt mainly, but will experiment. Thank you!
Does he add sugar? If so it might be a good idea to swap for extra ripe banana
Hi tarz, your information is impressive of the use of nutrition to control PD. I look for natural remedies for my PD.
Can you please tell me, to summarise, your list of ingredients:
Number one (most important?)? is berries, are they strawberries, rasberries, blue berries, black berries? which do you use most? has to be organic or not?
other fruits: all kind of apples, oranges, pears, banana, peaches, apricots, natarines, plums, grapes etc? organic or not?
cruciferous greens: drink raw? cabbage, broccoli, cauliflower, brussel sprouts? what else?
what about: spinach incl baby spinach? carrots? any others?
powders: alfafa, kelp, cinnamon, ginger, cacao, barley green?
1 teaspoon of each of all the above with fruits and blend together?
would any of them react against another that may cause side effect?
What these help you with? like reduced symptoms etc?
Thanks very much tarz.
You have pretty much summarized in your list, everything I might use in my smoothies, not all at once, of course, but different combinations, depending on what I have at hand on any given day. On days when I have little at hand, I might even go out and get a handful of fresh dandilions or the blendable parts of other previously identified, so-called weeds/herbs that grow around the property.
I even use the leaves of unsprayed cherry trees and apple trees because of their healthful factors. To me this is important because freshly picked things such as fruits and herbs, have living enzymes, which I believe are valuable components for the healing process.
The purpose of these smoothies is to provide all of the building blocks that my body might need to heal itself, including my brain. I have wondered whether any of the components might interact to cause negative side effects, but I have never detected any, so I don't know. But I have looked up such information about best food combinations on the internet from time-to-time.
You would have to experiment in order to find the combinations that work best for you, and you should do some research to learn which are the most nutrient rich ingredients, and which ones might provide you with the best sources of specific factors (vitamins, minerals, antioxidants, amino acids, etc.) which you feel you might need.
One more thing: you should wash with a mild detergent, and rinse well, the fruits and vegetables that might have been sprayed (or use organic ones), because it is important to use the skins in your smoothies, as well. They are significant sources of nutrients.
BTW in a research done at Rutgers University, it was shown that organically grown vegetables have a much greater density of trace minerals than ones using typical commercial fertilizers.
I would like to add to your advice: rather than detergent or soap, soak ALL produce in a tub of fresh water and baking soda, then rinse with clean water. High ph deactivates pesticides. I cannot express strongly enough the importance of eating clean and eating organic food. cen.acs.org/articles/95/web...
Excellent suggestion, SilentEchos. I actually thought about that at the time that I wrote the suggestion, but i was tired and couldn't remember anything better than a mild detergent, which perhaps is a little better than consuming pesticides/herbicides.
I recall now, that, back in the 1970's, I used to recommend and use Dr. Bronner's pure, liquid, organic, castille soap, from Escondido, Calif. I used to drive through Escondido on my delivery route for a company called Organic Foods And Gardens in those days, out of City of Industry.
Of the various scents that Dr Bronner offers, my favorite was peppermint. It is powerful (and should be diluted), pleasant smelling to humans, but deadly to all forms of bugs, insects and rodents. If it doesn't kill them, it drives them away.
I recommend using for lice, bedbugs, cockroaches, etc. Just shower and shampoo before bedtime, with a solution of this stuff, mixed with your regular shampoo, and there is enough residue on your body to drive away any pests lurking around your bed.
Please excuse the extraneous details to my past life experiences. I often seem to refer to them in my postings. I guess I'm kind of big on nostalgia.
I view this forum as a community, glad to hear your story.
I hope you're right. I don't want to bore anyone.
I have day time sleepiness, as well. I attribute it to Sinemet. I am not overweight and I do exercise, but still deal with sleepiness about an hour after taking C/L.
This microbiome series is on again free so if you have time to listen to it I found it worthwhile. It is up to episode 3. They seem to reshow it periodically so if they repeat the first few again you might be able to catch up. It was a real paradigm shift for me.
Just wanted to say that you and your husband have both been on my mind since I read your post yesterday. I have little to offer you except a virtual hug. Your spouse is 7 years further down the road than I am, but I have some similarities. I was also recently diagnosed with sleep apnea. My spouse says I can fall asleep faster then he can spell “sleep”. It has taken me a couple of months to get used to that crazy CPAP machine. Honestly, I hate it. However, I have to say that on the days that I can wear it for seven hours or longer I have more energy and can actually stay awake. It’s worth the effort she says begrudgingly! LOL I am also obese. I was heavy before diagnosis, but gained another 40 pounds during a bout of depression (I am traditionally a very positive person) after I was diagnosed. If your husband can force himself to hop into the local pool for water aerobics (many benefits like weightlessness, other people who are likely supportive, you don’t feel like you are sweating, easy on joints, most of your body is underwater, etc.) it can be as effective, or more so, than antidepressants. I tell my husband that, “I am going to the drugstore to get my happy endorphins!“ That means I’m going to the gym. My thoughts and prayers are with you both. It’s certainly not an easy road!
Thank you...Without ambition everything seems impossible for him...I think that this is brain damage. I dragged him around the block for two nights in a row, 5 minutes! Wish me luck. He was the energizer bunny when I met him.
Keep going! Exercise is cumulative. 5 minutes is better than a lot of healthy folks do! Great job!!! Maybe his brain will recall how much he used to like to move and 5 minutes will increase to 7, then 10... That will be my prayer. I can only imagine how tough this must be for you. Thanks for hanging in there and helping your spouse! He is a lucky man. Not everyone’s spouse sticks it out.
Hi, thank you for this, I am trying, but very difficult for family, teenage daughter. He got up at 6:00 p.m. yesterday. So much for Mother's day. I keep waiting around for him to participate in our lives, but this may be wishful thinking.
I used to wait around for my healthy husband to participate in family activities, as he has a football addiction. I finally got tired of waiting around to the point that I advised him of that weeks plans and if he chose to not engage, my son and I just moved forward with our plans. It wasn’t long and he decided to re-engage because he was missing out on life with us. May not apply since your spouse is ill? Maybe you should seek out counseling for you so you are better able to cope with his PD? I am so sad he missed Mother’s Day!! I hope you made the best of it in spite of the circumstances. Happy belated Mother’s Day! 💕💕
Good advice. I am not coping very well with PD in the family for 15 years...his mom lived with us and we watched her deteriorate, dementia, delusions, two broken hips and a broken shoulder. My mom died, my mother in law went into long term care, my husband's tremor started and the dog had some kind of neurological episode and had to be put down all within six months. Everyone has their limits I guess. I just can't relate to any of my friends anymore. Their lives seem really cool...but you're right I need to move on and make a cool life for the rest of the family. I just haven't been able to leave my best friend behind.
Oh my goodness!! I certainly understand... I am the one with PD and I hope my husband never leaves me behind either. 😢 Indeed, we can all only carry so much before our own health can become effected. You remain on my mind and in my prayers. 💕
I have to say that there is an amazing wealth of knowledge and experience in this conversation! Remember it doesn't have to be a neurologist, try a GP,or family practice doctor, an internist, a NP or a PA. I am seeing a chiropractor - and I'm amazed at how much she has decreased stiffness and pain.
I read your “bio”...No one promised us life would be fair, but WOW! 😢 Are you still nursing?
Look at the symptoms of Frontotemporal Dementia, does it describe your husband? FTD occurs in much younger people and your husband was dx at 47. FTD is on the spectrum of ALS. The symptoms you describe are very concerning and he should be reevaluated. God Bless you both.
Hi, yeah, totally went there about two years ago I thought this. His attention span is limited, he says he can't concentrate enough to read sometimes. Also explains his total lack of desire, impotent as well. When I get him in a neuro's office he looks perfect. He only works a few hours a week, which is the only thing that is keeping him semi going. He is very smart, so even if functioning with limitations he can "get by", I think. His mom has Parkinsons and dementia, at around 70. Thank you for your insight.
New and current hope for Parkinson's Disease
Mannitol, A Life Changer for My Husband... Our Story
Billy Connelly
Is weight loss common with PwP?
